IF YOU ARE WAITING, please let me to share my experience
Dear Fellow Members:
I started this thread because I know the anxiety of waiting, of being very afraid of not knowing what to expect, where to start, who to approach, and where to find information etc. etc. etc. I felt as if out of the blue, I was struck by lightning!!! After the initial shock on Feb. 26, 2015 confirming I had cancer on my right breast from an MRI, I started writing down everything...
As I was writing these experiences elsewhere, it suddenly occurred to me that I should share them here at BC.org as it happens at each stage, which are: pre-surgery, surgery, post-surgery, pre-chemo, chemo, post-chemo, pre-radiation, during radiation, post radiation, post treatment and so forth. Why? Because when I first came, I was only able to find bits and pieces of information, not an entire journey. And I want to share my journey so those who are new can at least know what to expect later on..
If I can help to alleviate your fear at this point in your life, then I am happy to have contributed. Please bear in mind that since every patient's cancer is different in terms of grade, tumor size, ER/PR, HER2 status, genes and other critical info. that should be the basis of your treatments. Some fellow members may have more serious diagnosis than I, others may have less serious diagnosis. In the end, our experiences and journey will be different. However, you will, at the minimum, be sent for some of these tests I've already done (see under My Diagnosis). So, getting an early overview CAN enable you to prepare for what LIES ahead, and for you to craft your journey THE WAY YOU WANTED...
*** Please remember that this is only one person's journey to give you some idea @!@
*** Scroll down to *** And So The Journey Begins *** if you want to read the details and skip below <Introductory Information>.
*** Scroll down to ***My**Initial**Diagnosis*** if you wish to get a summary of my treatments.
<Introductory Information>
The National Library of Medicine's (NLM) pubmed section have tons and tons of scientific info relating to practically every type of cancer topics and combination that you can read & harness...YES! This effort requires much of your time, and you must do it quickly too...Naturally, you will be feeling very anxious. Who wouldn't? But in your anxiety, reading up will to reduce that anxiety coz you would at least feel you are doing something productive, and adding towards your own knowledge of the what, where and how of cancer and treatment of your upcoming journey..... Also, the National Cancer Institute (NCI) too have many, many more detail specialized (not general) info of cancer than any other sites. They are quite worth your time to visit.
***There is a "NEW" custom cancer treatment which is a current hot topic, with seemingly fewer side effects, called IMMUNOTHERAPY. If this is of interest to you, the link that follows has a very comprehensive VIDEO symposium of this exciting therapy entitled Cancer Immunology & Immunotherapy: Delivery the Promise chaired by the National Cancer Institute (NCI). I genuinely believe it's worth your time watching as it is moving in the possible direction of "custom cancer therapy"...such hope by so many dedicated and passionate immunologists, doctors, scientists and researchers that their work could bring to us cancer patients.....
http://videocast.nih.gov/summary.asp?Live=14764&bhcp=1
http://videocast.nih.gov/summary.asp?Live=14780&bhcp=1
https://community.breastcancer.org/forum/147/topic/831945?page=1#idx_24
To continue, I have had 1st consult with my Surgical Oncologist (SO) on March 5th, all the various and necessary tests between that and my Biopsy (March 9th) and surgery to remove the tumor & lumpectomy reconstructive surgery (done simultaneously on March 25 by my SO and the Onco-plastic Surgeon - OPS). They are written under May 4th, 2015 Chemo #2 section below.
I am lucky that all these moved rather quickly at my Cancer Center because all the doctor specialists work as a team here i.e. My SO, OPS, Medical Oncologist (MO) and Radiation Oncologist (RO). I am also fortunate in that everyone of these specialists who saw me are the Senior Doctors of their respective department. My recommendation is that wherever possible, try to find a hospital that has a team of specialist such as mine for it will make your visit far easier to coordinate, as oppose to having to run and drive here and there, which can place even more stresses on you. If it is not possible, then try to plan the location within distance of each other. On Monday, April 27th, 2015, I started my 1st chemotherapy. Details are written below as well.
It may seem like I'm jumping the gun here for you. BUT, I strongly feel that if you have more ideas of this journey you will be embarking on, then I have no doubt that it'd be easier to travel forward. I have included a lot of details that I hope can help you know what you need to do when it's your turn. Some of the terms and names of drugs will seem daunting to you now, but believe me, you will want to learn all these terms, names and procedures very, very quickly. When I first came to this forum page, I tried to find such details of each segment of others' journey, but was unable to. Which is why I wanted to do it this way.
Also, at the very bottom are listed several links for you to go to, including one discussing various oncoplastic surgical methods available for breast reconstruction after lumpectomy based on your tumor location and size...Forgive me, if some of you may find my info too lengthy.
While you are waiting, this very site has a pdf on Your Guide to the Breast Cancer Pathology Report. Please download, save and print it out. It is a terrific guide to keep you up to speed very quickly about your cancer. Keep it by you so you can look at it again and again until you remember the terminologies. This pdf did help me very much to acquaint me of the basics of cancer in the initial leg of my journey. So, I believe it will be useful to you too.
http://www.breastcancer.org/search?utf8=%E2%9C%93&term=how+to+read+patholigy+report&commit=Search
Regardless, I wish you well in your own unique journey. Be Brave. You WILL OVERCOME !!!
MAY PEACE & STRENGTH BE WITH US, & KNOWLEDGE TO GUIDE US IN OUR EVERY DECISION...^!!^
**M Y *** I N I T I A L *** D I A G N O S I S** - A SUMMARY OF INFO
Stage IIA, Grade 3, IDC, tumor size 2.5, 2.6 and 3.0 cm respectively (via MRI, Ultrasound, Mammograpm)
Pre-Biopsy: Had ultrasound, MRI, bone scan (pix at bottom), chest X-ray, full blood test (FBT), mammogram, abdominal ultrasound test done.
Post-Biopsy: Confirmed IDC with some degree of DCI. tumor malignant, ER/PR - (negative) HER2 + (positive 90%), No genetic testing for BRCA1 (BReast CAncer gene 1) and BRCA2 (BReast CAncer gene 2) since there is no family history. Possible lymphovascular involvement.
Surgery: Confirmed malignant tumor size 2.5 cm, 4.5 cm taken out with margins, 0/1 Sentinel Node, NO ALND authorized. Chose to have Lumpectomy on right breast via the Round-Block Technique (this is an onco-plastic surgical method where the areola is cut out. Then the tumor is taken out from there, The areola is then sewn back with using dissolvable sutures. This is method is used by plastic surgeons for women who wants breast augmentations too) Healing gradually + beautifully.Post-Surgery Recovery Time Before Chemo Start: Asked for 4 weeks recovery time for breast to heal before chemo starts. My MO originally wanted me to start chemo in 1-2 weeks, but I declined. I wanted my lumpectomy and reconstructed breast to heal some more first..
Pre-Chemo: Had Full Blood Test (FBT) and MUGA tests done before Chemo #1. FBT and weight + height must be taken every time before each chemo. Follow up visit with MO every 3 weeks to review chemo progress, to discuss previous FBT, and to make any adjustments to treatment plan (TP) where needed.
CHEMO DRUGS: 9-12 Weeks of Concurrent weekly cycle of Herceptin + Paclitaxel. Please see my spreadsheet at bottom of this thread, listed in infusion order + dosage amount. Herceptin doses are calculated based one's weight = total dosage. Initial Herceptin dosage (1st chemo) usually higher. Subsequent dosages are lesser and remain the same thereafter. Please ask your doctor to give you the details.. For paclitaxel (a taxane drug) both weight & height are used to calculate your dosages.. After chemo completion, I was sent for a Transthoracic Echocardiogram (TTE) to test for cardiotoxicity from Herceptin.PRE-RADIATION: Sent for CT planning scans and tattoo markings to my entire right breast section. A day before actual radiation, had simulation done to make adjustments to markings to ensure accuracy of RT. RADs started on Aug 12, 2015 for a total of 5 weekly sessions only.RADIATION: The waiting for my turn time took far longer than the actual radiation session, which took about 5 minutes each time. It was painless. Each patient had to change into the hospital gown. As soon as it is over, I went to the locker to take out my 100% Aloe Vera and apply them throughout my breast before changing. You may bring freshly cut aloe vera if you so wish. At home, I will apply it everyday and more often if the area feels dry or itchy. If you get radiation burns easily, do it more often.POST RADIATION: I did not have any side effects from radiation treatment. Everything seems normal thereafter. Just waiting for the surgical part (areola) to heal.POST TREATMENT: Was scheduled to each doctor specialist every 4 months the 1st two years, then twice every subsequent year. Must do mammogram every year. No additional pills or drugs given either.
NOTE: I am an American who chose to have my treatment done in Singapore. My insurance covers my treatment there.
***AND SO THE JOURNEY BEGINS ... ***
When I was first diagnosed with breast cancer in Feb 26th, I flew home on Mar 1st to get treatment at the National Cancer Center there. After my 1st consult with my Surgical Oncologist (SO), I was sent for test after test within the first 2 weeks : Bone-scan test, full blood test, Chest X-ray, ECG, mammograms, abdomen ultrasounds, and so forth, followed by Biopsy^^.
Since my SO (a most approachable elegant lady) had to fly to Europe for a conference, she informed me that her colleague, an Onco-plastic Surgeon (OPS) will cover for her for a week. And that the latter will discuss the results of all my tests. At first, my OPS informed me that "most people choose to do a mastectomy..." I was instantly aghast at even the thought of anyone not even attempting to save their breast especially if it is savea. Naturally, I replied that I won't even consider it because my research indicated that the size of my breast in relation to the tumor size & type suggested lumpectomy to be a better alternative, that my SO was already aware of my decision. End of discussion.
Then she presented another option – & that was to do Neoadjuvant** Chemo >> Surgery >> Chemo >> Radiation (**Neoadjuvant Therapy - the purpose of which is to shrink the 2.5 cm tumor).
Having pre-read about the effects of chemo, I declined this option as I did not wish to go into surgery in a weakened physical state. Also, based on my research, since my tumor size is of 2.5 cm, at one location, and my breast is not small, neo-adjvant was not a necessity either. True, I have the most aggressive type of cancer – Grade 3 and HER2+. I had made it very clear during my initial consult with my 1st SO that I wanted breast conserving surgery BCS (aka lumpectomy, of which I had spent many hours reading about prior to the first consult). Yes, I understood that that would be contingent upon whether cancer has spread or not into the Sentinel Lymph Nodes.
>>>> Please read my post entitled " EVERYTHING U WANTED TO KNOW ABOUT LYMPH NODES" below where I have pasted an enlightening and wonderful article by a group of doctors, along with their link.
NOTE: I might have considered neo-adjuvant therapy had my tumor size been > 4.0 cm. Our breast size is among one of the factors determining whether it's advisable to go for neo-adjuvant or not.
^^ Biopsy was a painless 10-15 mins outpatient procedure. First, a local anesthesia using lignocaine was given. Then a 0.5 cm incision was made. Next, my SO used an ultrasound guided fine needle procedure to do the biopsy. The ultrasound is to accurately guide the needle into the tumor to take out 5-6 cores of tumor cells from various angles for pathological analysis. These cores are later examined for the type of hormone receptor for estrogen (ER) and progesterone (PR) (positive or negative), for the HER2 status (positive or negative), for cancer genes and other relevant info. These results generally determine the course of one's (probably standard) treatment. The incision heals within 24-48 hours. In my case, the results came back within 4 work days.
You could always ask your doctor's office to call and inform you of your results, ahead of your scheduled appointment. This then gives you enough time to start your research before your meeting with your SO. If they say they would prefer to wait until you see your doctor to discuss, insists very clearly that they give, fax or email it to you too (nicely). Some office will cite "it is not their policy" and so forth. But you insist on being given because (a) you have the right to it, (b) you PAID for it and (c) you are an adult and they should not be treating you like a child. After you get it, start reading the details, and start getting yourself so well verse in your own case (there's a link below on how to read & understand pathology reports).
I further suggest that you going to pubmed (in NLM) to do your research on standard and alternative treatments. If you spend enough time researching, you may even come across a treatment plan that was used before, and may even be applicable to yourself or your love one(s). That was how I found my treatment plan, from a proven clinical trial that is adopted by the New Zealand Pharmaceutical Agency for cancers similar to mine. If you really want to be proactive and protect your body, that's what you will do. And you will NEVER, under any circumstances, GIVE UP on yourself or your love one(s). That's the committed kind of proactivity you will engage in when you love yourself or your love ones.
Example of possible ER/PR and HER2 combinations are : - - - | - - + | + - + | + + + | - + - | + + -
DO BE sure to get hard copies of results of every test you are asked to do. Keep them in a file in chronological order. Learning to read and understand the results of our pathological reports ahead of time puts us at an advantage in that when we meet up with our doctor, we'd already know what further questions we wish to ask. For me, I quite rather enjoy this part of the learning process.
The 3rd option was presented: surgery >> chemo >> radiation. This was the preference I had in mind all along, after my research. (although at that time, I still wasn't sure about whether I even wanted radiation if I had chemo). So we discussed my upcoming surgery, to be performed by my SO, and breast reconstruction, to be performed by her, now my OPS. She explained all surgical risks involved, type of anesthesia, about SLND, ALND, breast reconstruction details and how she was going to do it and why she elected the method in question, estimated total surgery time, estimated recovery time, and other related info.
In my questions to her about SLND, I discovered that my cancer center's protocol during surgery is this -- in addition to taking out the tumor with an all around 1 cm margin, between 1 to 4 sentinel lymph nodes will also be taken out. It is then tested on the spot to see if cancer cells have spread. That if EVEN 1 sentinel node is found to be positive (cancerous), my doctor(s) will immediately proceed to do a complete axillary dissection. This means that the ENTIRE lymph nodes from the breast upwards to ones' underarm will be taken out. Every BC patient can have from between 20 to 40 nodes, some perhaps even more. That's an awful lot of precious nodes to be cut out of one's body, and NOT a decision I would lightly give without serious due consideration. This is especially critical by virtue of the fact that lymph nodes do not re-generate, and once taken out, would be gone forever!
I think this is how my SO determines the no. of sentinel nodes to remove. If the tumor with margins removed comes back with clear margins, then only 1 lymph node is removed for further testing to ensure that that is so. If the margins are too close to call (meaning cancer has spread more than halfway to margins), then more sentinel nodes are cut out for testing. If those nodes come back negative, no axillary will be done, If, however, those nodes are positive (even 1), then axillary are automatically done unless you specifically not give permission for it (as in my own case).
^^^Please refer to the picture below for the location of our lymphatic system. See those green colored bean-shape cells at 45 degrees from the left and right breast towards the arms. Well, that's all those nodes that will be taken out as well as those in the underarms, whichever that arm will be. It's not meant to scare you. Its meant to make you MORE AWARE of what's AT STAKE here. These pictures were taken from MissBennettScience ppt presentation and graysanatomyonline.comFrom all that I have read of axillary lymph node dissection (ALND), it's a very, very scary thing because once the nodes are taken out, they're gone forever, and will NEVER regenerate. In addition, the underarm without the axillary nodes will essentially be weak and your entire arm cannot lift anything over 5 pounds. Also, you cannot have any blood extracted, or infusion or vaccines done to it, and you have keep exercising it to reduce or prevent lymphedema. I was not prepared for that to happen and decided I will do whatever I can to keep my axillary nodes.When my OPS went on to explain how she was going to re-construct my breast (which was quite different from the method recommended in current literature ), and explain how her method** will make my breast look more natural and closer in size to my left breast, I was not really listening because I had thought it would be done that awful way. But when she repeated that it would be quite good, I was fascinated though I really had no idea what she was talking about. I thought well, if she can make my breast looks better than current practice, I wont complain. So I asked her the name of the technique and made a mental note to read up more about it. Thereafter, I was asked if I had any questions, before being asked to sign the Patient Consent Form (for surgery, SLND and ALND clearance).^^^ Now that I have had my reconstructive surgery, I will say that my OPS did a fantastic job on the reconstruction of my right breast. I am a size 38D. After the surgery that took out the 2.5 +1+1 cm = 4.5 cm or 20% (1/5) of my right breast, it is now a 36D (see pix much further below). Can you believe it? God, the method she used, called the the Round Block Technique, retains the natural looks of my right breast. I have a scar around my areola from where the incision was made, and from where the tumor was taken out. But this scar can fade with the application of the Mederma Scar Fading cream, but I have to wait for the incision to heal first before applying. Current literature recommends cutting from the top or wherever the tumor is located, which leaves one's breast with a very ugly pothole and/or distortion, where-ever it is cut out. NOT SO with the method my OPS did. As of this writing, my nipple, areola and breast still retain it's sensation. That's the beauty of this method. I'd be more than willing to send you a picture in my private email if you wish to see it. I gave my SO permission to use pictures of it in any conference presentation she will make in the near future. I think any method that can preserve one's breast beautifully, and make it less distorted is a welcome thing for us breast cancer patients, agree?^^^It has just occured to me that should you choose the flap BCS or other methods where flesh are taken from your abdomen or other areas, please ensure that your lymph nodes in those areas are not disturbed or inadvertently taken out as well. Please check with your OPS to ensure that this does not happen. You really don't want those good nodes "accidentally" taken out because they are really an important part of our lymphatic system and our body. You will see why after you read the link on "Everything U Want to know about lymph nodes" posted below. Note: However, if you have had SLND or ANLD dissection, then doing arm exercises are a must. They helped to facilitate healing your underarm faster, and to reduce and/or prevent the chances of lymphedema. It is to your advantage to start exercising the arms the very next day after surgery. Your physiotherapist will likely be the one to show you some of these exercises before your discharge. I only stayed a night for my surgery. For some people, you may feel painful after surgery and thus may be reluctant to move... So, olease do just a little at a time than none at all as lymphedema is not a pleasant condition to have. "Lymphedema aka lymphatic obstruction, is a condition of localized fluid retention and tissue swelling caused by a compromised lymphatic system, which normally returns interstitial fluid to the thoracic duct and then the bloodstream." - from Wikipedia. I have posted alternative exercise pictures link under the Fitness and Getting Back in Shape section of this Forum Page that I found that could be useful.Truth be told, I did not sleep at all for 2 nights about the ALND consent. I went into the NLM website under PUBMED and read for hours and hours about SNLN and ALND. I found new literature stating that even if 1/4 (meaning one of four) , 2/4, 3/4 sentinel nodes are positive DOES NOT NECESSARILY JUSTIFY AN ENTIRE AXILLARY lymph nodes dissection (i.e. removal) under certain conditions^^^. These articles provided strong and compelling explanation and alternatives to ALND. With that in mind, I called and left a message with my SO's nurses (she was in conference in Europe remember? ) that I wanted to cancel the ALND portion of the patient consent form. ^^^ These NCI & NLM link offers more articles about sentinel and axillary nodes:http://www.cancer.gov/about-cancer/diagnosis-staging/staging/sentinel-node-biopsy-fact-sheethttp://www.ncbi.nlm.nih.gov/pmc/?term=sentinel+lym...To further continue, My surgery was scheduled for 1500 hours on Wed, March 25. My message to my SO was on Sunday, March 23. I even wrote her an email to make sure she got my message. My SO returned my call immediately after her Monday morning surgery. Naturally, she asked why. I told her my findings and my concerns. She respected it, and asked me to think through and give her my answer on the day of surgery. Come surgery day, just before I went under, she asked** if I still wanted to cancel axillary clearance. I said yes, and she brought my consent form, cancelled the ALND part of consent, had me initialed it in front of the surgical team, and told me they will still give me the care that I deserve, and that we can re-visit this issue after results of the SNLD comes back in a week's time. If I not cancelled, then the SNLD results would be instantaneous. I said that I understood it all. I felt so relieved for having done that before I was placed under general anesthesia. I 've also requested my SO to please take a picture of my tumor as I want to know what the sucker looked like (see below bottom)
Tumor and reconstructive surgery were performed consecutively that day by both my Surgical Oncologist & Oncoplastic Surgeon respectively. It saved time, pain and money. Surgery took about 2.5 hours with another 2 hours recovery time. I awoke about 5 hours later in my ward. My SO stopped by to check on my breast again before leaving. I experienced only a low grade pain that was quite bearable. The nurses came to check on me periodically. Had a good hospital porridge dinner. Had to pee in a bedpan over the next 2.5 hours or so until I could go to the restroom myself. My SO's residents came early the next morning to check on breast. She too came with her senior resident in her morning ward round. I felt relaxed and so well cared for throughout.
**If my SO did not bring up the subject of the ALND cancellation, then that means my SO didn't get my message. So it is up to me to bring the subject up. Do not be afraid to do so when you are absolutely convinced of your decision. As a patient, you have every right to make changes to any part of any procedure you are uncomfortable. I wanted my surgery to proceed, sans ALND, that's all. I'm not encouraging you to change your mind without rhyme or reason. You must take the time to weight in the consequences.
Post surgery visit a week later with my 1st SO gave me the best news I've ever had. I had clear margins and the 1 node taken out was negative. I will say too that that 2.5 cm cancer grew sometime during last August 2014 when I felt the unusual itchiness and growing lump in my right breast, but chosen to ignore it. I have myself to blame for postponing my bi-annual mammogram because I was studying for my GRE, and doing other things. Once that was over in January this year, then went to have it checked up in mid Feb 2015 while I was in Beijing. Ultrasound showed tumor. Had MRI done confirming cancer. So I flew back home beginning March. Well, better late than never.
Excuse the detour, but back to what I was saying. With this cancer, I don't intend to be passive where my body is concerned. Like many of you, my world was shattered and all the plans that I had been making had to be put on pause. For instance, I was so looking forward to getting (hopefully) my Ph.D in Education Leadership scholarship at Harvard University for the 2015-2016 school year to which I have applied, and joining my daughter back in the States, amongst the many other ambitious plans I have. So getting news of breast cancer sucks! sucks! sucks! big time. After the initial shock and some tears, I decided from that VERY moment on, that I wanted to be in charge of this part of my life's journey. That it was no time for self-pity. I knew that I will be as pro-active as I can. I will not accept everything that was recommended to me without understanding why, without checking on its validity. I will guard and protect MY BODY at all times. No one will do this job better and with more enthusiasm than I, ourselves.
That is not to say that the majority of doctors in this field are not doing their job.They are, and to the best of their abilities, and within the confines of the available time they have. Oftentimes, they are so very busy having to deal with so many details of so many different types, stages, grades of cancer patients and procedures that I believe they are overwhelmed, thus making it even harder for them to keep up too. The adoption of standard treatment plans are thus inevitable.
I'm not saying that that is bad. I'm saying that by helping ourselves through reading and researching from as many legitimate sources as we can, and even recognizing bias reports and trials especially from the tons of information available from the National Library of Medicine (NLM), we are doing ourselves a very important favor. We can engage in intelligent conversations with our very busy SOs, MOs, ROs and all the specialists we will have to deal with throughout this entire journey.
It is not short a journey by any means. It is emotionally, physically and psychologically taxing, exhausting and at times stressful. So, isn't protecting our physical selves worth our time? Isn't knowing what's being done to us and put into us better for us? I do realize that reading medical reports and clinical trials are daunting or difficult for some people. but please, please, please try, try harder. Really, it's not so bad after all. If you treat it as another learning process, something to acquire to your benefit, you may just find this world of medicine interesting, albeit not by choice.
It is important that you involve your spouse (or family) and children (depending on their ages) in this process. When you educate yourself, can you then help them understand the process and what they can expect to happen to you to prepare them so that they, in turn, can provide the support you will need. You must try To be their anchor wherever possible. If not, ask your spouse or family to be the anchor for the family. If you're having lumpectomy or mastectomy, read it first yourself and then explain to him/them. If you hold yourself together, you are giving them strength as well. Believe that you are capable, believe in your own strength, just believe. If your spouse or family member can accompany you during your consult with the SOs, MOs and other specialists, that would be great. Always try to make a list of questionnaires to bring along. Listen to their recommendations, but asks why.
If you have been reading up, you would then have some idea of what you'll want? If what is being recommended is not what you want, asks about your alternatives. Great doctors will listen to your concerns, and address it, NOT push it aside or insists that only his TP will work for you. In the beginning, my MO kept harping on my Grade 3 HER2+ cancer aggressiveness which I was already very aware, and wanted me on the 12 months Herceptin plan. But because I read and done my research (quite thoroughly I believe), I wouldn't budged. I explained my points, and why I wanted the plan I had chosen. I sent him articles based on clinical facts and statistics that supported my decision. We "conversated" via email for about a week, back and forth until we both reached a compromise that are acceptable to us. I am grateful for the patience my MO extends to me, as did my 2 SOs. Throughout it all, I feel like a part of their team, and that I can approach them anytime. I am truly blessed our paths crossed. I hope you too will find the doctors who will give you the care you deserve. Do not give up on your search. You would instinctively know during the 1st consult if the Dr. you are speaking with is the doctor who will care for you. I went online to look up the credentials of all the doctors at my cancer center, their education and work background, their experiences should be clearly stated in their website.
From my experience, I have found that when I can engage my doctors, they love it! And they are willing to discuss my findings with me, and more willing to come to a compromise with me. Great doctors would, anyway. There will be a few doctors who will feel defensive or hostile when we start asking questions. If that is the case, I besiege you to find another doctor who won't have this attitude towards you. You m-u-s-t ! Your life thereafter depends on it. It will make a BIG difference on how you will experience this journey, and you'll want to make the most of it.
Doctors who treat you as a member of his team, NOT just a number, will make this unpleasant journey, PLEASANT, so pleasant that you won't dread going in for tests, for surgeries, for therapies. This journey is something that you are unlikely to forget for the rest of your life because the scars will be there to remind you of it. So, as strange as it is to say this - you'll want it to be an unforgettable yet pleasant experience that won't cause you to be sad, or frustrated or bitter. At the end of it all, you want to be able to say, "YES, I've conquered and survived it ! I'm stronger and it wasn't so bad after all." You paid for it, for the entire treatment, one way or another. So, you have the right to expect professionalism and empathy at all times and not be treated as a sub-species of the human race.
How to find these doctors? Ask around – your friends, colleagues, neighbors, relatives, even from forum pages,and your GPs. That means there are a lot of legwork that must be done before embarking on this journey, before your first visit to good , patient specialists, including your commute time, their availability after office hours, what timeframe can you can expect to get answers to your questions and so forth. You'll want to find a medical practice where most of the doctors and their nurses who will go that extra mile to make your journey less frightening. Whenever anyone recommends any specialist doctor to you, ask what it is about them that make them special. NEVER be afraid to ask, ask, ask, and clarify until you are satisfied. NEVER, NEVER EVER short change yourself, no matter how tired you are, please.
But you too must do your part to educate yourself since doctors cannot explain everything to you as they allocate certain amount of time for each patient. You could find which days are less busy for them so they'll have more time should you think you have lots of questions. I generally like to get the first appointment in the morning or after lunch or the last appointment of the day, wherever possible.
Finally, I am only sharing my experience thus far with you. There will be members out there who may disagree with my decisions and what I have written They have every right to be since we are all different in our cancer stages, grades and so forth. We all choose what we are most comfortable with. So, if you are here to want to share your experiences, I truly welcome it because it enriches my life. But if you are here just to criticize, I respectfully ask that you refrain from it. Please go start your own thread and offer another perspective.
P.S. Please leave me a comment to let me know if the above section is helpful to you. Thank you.
***S T A R T *** O F *** C H E M O T H E R A P Y ***
April 13, 2015 - Ist Consultation with my Medical Oncologist (MO) to discuss treatment plan. We discussed much about the treatment he wanted me to be on, and the treatment I want to be on. Eventually, he asked me to think over our discussion and to give him an answer of the TP.
April 15, 2015: Sent for a MUGA test and Full Blood Count Test (FBC or CBC)
April 20, 2015: 2nd Consultation with MO to review the results of MUGA and FBC. Given OK to proceed to chemo. We finally agree on a TP as listed below.***APRIL 27th, 2015: START OF CHEMOTHERAPHY # 1***
Initial Duration: 4.5 hours (including pre-chemo questionnaires + pre-medication infusion)
Treatment Plan (TP)::
12 weeks weekly cycle of concurrent Herceptin + Paclitaxel (the synergies of these two drugs have proven to give better results for HER2+ patients per FinHer clinical trial. Details reasons given below under Chemo #2). Dosages for Herceptin is based on one's weight (@ 2mg/kg), and for paclitaxel based on one's weight & height (@80mg/m2 - there's a formula which was given to me after I asked about it).
(I) Pre-Herceptin Medication: Panadol (2 oral) + Diphenhydramine (25 mg, aka Benedryll) 30 mins, including recovery time. The purpose of these is to help patient deal with the chills and cold that Herceptin can caused.
(II) Herceptin: 60 mins (initial dose, 4mg/kg. Subsequent dose 2 mg/kg). It was OK for me except that during the last 15 mins of infusion, the benedryll wore off and I did indeed felt cold and chilly in my body. The Panadol caused my brain to be a little groggy. So, I made it a point to reduce panadol to 1 pill and to request for continue benedryll in subsequent treatment so that I don't feel the chill and cold coming on in my body. (Note: if you are allergic to any medication, then please speak to your MO for alternatives drugs)
(III) Pre-Medication for Paclitaxel (Ranitindine 50mg, Diphenhyramine 25mg, Dexamethasone 20mg) - When asked, it was explained to me that these pre-medication help to reduce/prevent allergies of paclitaxel in patients. (30 mins + 30 mins recovery time). I found these to really help reduce side effects for me except that the dexamethasone (aka steroids) caused sleeplessness in the week following Chemo #1.
(IV) 30 mins before the start of paclitaxel - Icing of both hands & feet to reduce or prevent neuropathy. My MO recommended that I do this though it's optional. But I have to bring all items myself. (see pix below of item lists). I wore double layer food preparation gloves, and soaked my hands in a basin of water filled with lots of frozen blue ice. I also wrapped each of my feet in plastic bag before soaking them in another basin of water with sufficient frozen blue ice to last me through 2 hours** (30 mins before paclitaxel, 60 mins during, and 30 mins more after infusion end). He said it worked on the majority of his patients, although it didn't work on two of his patients. He did say it was optional, that it's somewhat inconvenient because I have to bring all these items myself. What's a little inconvenience if both my hands and feet come out of chemo without loss of sensation, right? I explained to the nurse how I wanted it done since only my MO recommends it to his patients. I rang for the nurses in the chemo room to help me with taking the melted blue ice ones out and replace it with new ones from my Coleman cooler box (please feel free to send me a private email if you want pictures, instructions and list of items) or if money is no object for you, you could buy hypothermia gloves and slippers at Amazon.com. They cost about US$100+/pair, and you will need at least 2 pairs of each. I prefer to go with the cheaper version. I did go to the NLM and found trials confirming this icing effectiveness. If you want to have this article, either email me or go to the "Venting About Neuropathy" Thread where I have posted it.
(IV) Paclitaxel (80 mg/m2) - 60 mins infusion. That rate of infusion can sometimes affect how you feel. If you feel uncomfortable at any point of any drug infusion, it's OK to call the nurse to ask that the rate of infusion be slowed down. I did that during my pre-Herceptin infusion of benedryll. When it was done too fast, my head hurt. After the adjustment, the hurting stopped.
(V) 30 more mins icing of hands and feet.
During chemotherapy, we are allowed to drink to keep ourselves hydrated, and to eat (I brought crackers) between infusion. I always bring along a 1.5 litre bottle of green bean soup that I had boiled earlier that morning. In traditional Chinese medicine (TCM), green bean soup (no sugar added, beans crushed to extract max nutrient then discarded) is believed to help to detox our body. I drink it between infusion. During infusion, we will go to the toilet several times. The nurses where I have my chemo are helpful, patient and wonderful. At this cancer center, there are two rooms for chemo, one with 76 comfortable seats and another with 28 seats that can be reclined any way you want. I requested to be scheduled in the smaller room. In front of every seat is our very own TV to watch any channels we want, with our own remote and call buttons.
When my infusion was over, I was anxious to go to the toilette for the 4th time. I stood up, forgetting that having soaked my feet in cold, cold water for so long, it would be numbed and red (not painful). I almost fall over but someone caught me. Lesson learned. Then I gulped down the rest of my green bean soup. I will say that I drink at least 4-5 litres of fluid every day. It seems to lessen any side effects. Luckily, my tastebuds did not change drastically. Though I read it did for many people here in the forum pages. I believe drinking lots and lots of fluid helps to reduce the change in taste as well.
I was grateful that my sister was with me. When we got home, it was dinner time and I was quite hungry. I had a bowl of baby oatmeal with dried cranberries/raisins/honey. Then I gulped 1/2 liter of water. Then proceeded to have 2 large slices of cranberries/walnut multigrain bread, drank another 1/2 liter of water, took my immune system booster supplement, brush my teeth, and gargled my mouth with biotene (effective and important to have) to prevent sore mouth. Then to bed. I slept like a baby.
Tuesday, April 28th - got up late not knowing what to expect. I was happy that I felt normal. As always, I drank 1/2 litre of water, then made a bowl of baby oatmeal (my usual morning breakfast food). My sister made a protein and fiber rich smoothie for me. Took several supplements: Immune System booster, red wine/grape seed extract (anti cancer oxidants) and fish oil (for heart, mind and joint health). I spent the day relaxing, reading online, watching TV and going for an hour walking and exercising during late afternoon. I found my appetite was still good. Ate mostly fruits, veggie soups, porridge with quinoa and fish (mostly Salmon or Red Snapper) or noodles. NO raw salads until chemo over. Dont go to any Japanese restaurant was an advice given to me. My gf did even though she didnt eat sushi. She ended up somehow with stomach upset and was hospitalised for 3 days. Watched Masterchef, then did my usual nightly ritual - shower, brush teeth, gargled mouth, then to bed. Slept well.
Wednesday, April 29th - got up early. Ate as usual. Same routine. Went for a walk and do arms swingin exercises by the river. So far, still feeling and eating OK. Same routine. Same supplements. Went to bed around 2300 hours. Woke up in the middle of night to pee. Felt a hint of stinging. Might be the chemo settling in...
Thursday, April 30th - Got up feeling an ache all over my body...finished eating my oatmeal, and drank my smoothie...appetite still good, taste buds still unchanged. Let's see what the rest of the day will bring...(decided to lay off fish oil next time the day before, day of and day after chemo after reading about an article about it in this site). Continue taking immune system booster supplement. Got up several times at night to pee.
Friday, May 1st- Early morning, hint of constipation. Had usual breakfast and 1/2 litre water. Had noodles late morning. 1st bowel movement. Noticed bright red blood in stool water. Drank more water. Late morning, went for 2nd bowel movement. Again, blood in stool. Drank more h2o. No pain, didn't panic, but email my MO about it (Labor Day holiday today, so don't expect him to reply soon). @ Noon, had 3rd bowel movement. This time, not constipated but blood was darker in color, pieces of red muscusy chunks like those one used to have during heavy menstration. Email my MO again. Drank some more H2O. Went to lie down. Just gotup to update this. Will see what happens.
Saturday, May 2nd - Had 2 bowel movement this am. Again with blood in stool...called hospital chemo nurse. She suggested going to the hospital's emergency, which I did, at about 10am.... Wow, what along wait with so many people waiting. Finally, after 3 hours, got to see a Dr. After checking my bottom, he said I have a few small hemorrhoids in my colon. He also took blood samples to do a Full Blood Count. Gave me a prescription called Proctosedyl Ointment to apply just before bedtime and after a shower. I did it Sunday night since the Pharmacy was out of stock on Saturday.
After waiting for 2 hours, blood report came back. Everything's normal! Yipeee! So, I don't have to go for a blood test for my upcoming Monday Chemo #2. So that's good...except that now, I need to go for a colorectal follow up in 2.5 weeks time. Also got a text reply from my MO who is on holiday. He suggested the same, and didn't think it would be serious. Filled him in on my status.. I just love all my doctors at this hospital. BTW, Sunday morning's bowel movement and thereafter has had no bleeding. So the Proctosedyl Ointment worked!
Note1: My girlfriend who had cancer 10 years ago said she regretted not taking the immune system booster whereas her girlfriend with breast cancer did. She said that she gets infection easily whereas her gf does not. So I took what her gf recommended to her. The ones She got was extremely expensive. My older sister found a comparable supplement called the agaricus blazei immune system booster. Read research on it. Seems to work on mices. Japanese pharmacy sells them for same use too.
Note2: I read somewhere that taxanes drugs like paclitaxel/docetaxel causes our nails to be sensitive to light. One patient painted her nails with dark color nail polish on both her nails and toes, and did not get any cracked or darkened nail. She recounted that on the last day of her chemo, she forgot to repaint her nails the night before. When she got out of treatment, and got home, one of her nails turned dark and cracked. So, I'm going to follow this advice faithfully and see how it goes, and will report back.
Note 3: My doctor said that by Treatment 2 at the earliest, and Treatment 3 at the latest, I should see my hair falling. I had long hair before, but had cut it short. Then I saw a lady in the chemo room had the same short hair as mine. But hers have already started falling in blotches. So, I've decided to go for a crew-cut next Tuesday, after my Monday T2. I'd rather not get up finding batches of hair on my pillow. I'm not afraid of hair loss coz I know they will come back...
Note 4**: When I asked my MO why I need to wear double layer plastic gloves on my hands and feetwhen icing, he said it would make soaking in the cold water bearable. But said I could try it out without and find out for myself. I found his advice to be absolutely true..
Below is a list of neuropathy preventing items I bring with me to chemo each week. Except for the Coleman cooler, you can probably get all these items from the 99 cents store. They are, from left to right:
1) Food gloves (double layers for the hands),
2) Roll of vegetable bags (one for each foot, secure with velcro),
3) Velcro tapes (for securing to prevent water from getting in) -
4) Blue ice (I got various sizes because I wanted the water to be extremely cold. eg 6 large ones that last 4-5 hours, medium size ones that last about 3 hours and the soft plastic ones that last 2 hours),
5) Rectangle square plastic basin for icing both hands (which sits on my lap over a folded blanket - yeah I sit in an upright position where my chair is angles at about 100 degrees. I can still talk to my neighbors or sleep. It's not uncomfortable for me),
6) Round or rectangular plastic basin to soak and ice both my feet in, and
7) 2 quarts Coleman cooler box to keep the blue ice frozen - the Coleman is useful because I am petite. So, I lay the Coleman on its side with the lid facing outwards should I need more blue ice). Then I sat the round plastic basin on top of it before soaking my legs. This put my feet in an extremely comfortable angle/position. Now before I do my icing, I will go to the restroom first. During this part, I may have to go to the restroom as well. So you'll probably need the help of the nurse. But since our large restroom inside the chemo room is within a few seconds walking distance, I can go myself, along with the IV stand. But the nurses and health care attendants are very quick to come to my assistance if when they see me getting up by myself. When they are busy, I don't bother them.
Note 1: Since Herceptin infusion is given last, I will call my sister an hour before so that she can time correctly to leave our home to bring all of the above stuff. That's because I want the blue ice not to melt too early. Our home fridge was too small to freeze the blue ice. Luckily just in front of our apartment is the Supermarket. They have a walk-in freezer. I went and spoke to the Manager, explained my situation, and he kindly allowed me to put in Coleman with all the blue ice the day before so my sister can pick up it just before she leaves for the National Cancer Center. This works out very well as it's only once a week. After my 9 weeks treatment, I went and ordered a large cheesecake for him and his entire staff to thank them for being so kind towards me.
Note 2: It seems like a lot of things to carry. But you only need to carry 2 pair of glove to double layer it, and a pair of vegetable plastic bags (thick ones). The blue ices would be in the Coleman, and the gloves, vegetable bags, Velcro would be on top of it, along with a handwash cloth to clean any splashes I may inadvertently make). The pastic basins are stacked together in a large bag. When you buy them, check to make sure the size comfortably fit both your hands and feet. You can buy any shape you want.
Note 3: If you think this is a hassle, then feel free to buy the hypothermia gloves for hands and feet. You will likely need 2 pairs of each. They cost about $99 - $105 per pair. So, if money is not an issue, then, yeah. But I do like the cheaper version because the water can be really cold. Actually because I put on 2 pairs of gloves, it act as an insulation so it's comforting cold. Same for the feet. When infusion is over, I continue with icing for another 20-30 minutes. Then the gloves and veggie bags are discarded together. I try be considerate and not make a mess because the nurses are extremely busy at this center. If I get water on the floor, when I'm all clean up, I'll call for the attendant to help mop the floor. And I'll certainly clean up whatever other mess I've made before leaving, including folding the blankets they've given me to keep me warm and place them on the chair before leaving.
Note: Both feet are standing on 2 pieces of blue ice below with more pieces above it to ensure the feet are totally soaked in cold water. Both feet are covered with plastic wraps.
***CHEMO #2: MONDAY, May 4th 2015**** Duration: 3.5 hours
All went well as listed in Chemo#1 above except that:
Pre-medication for Herceptin was reduced to 1 Panadol, with Diphenhydramine (benedryll) remaining at 25 mg. I read in this forum pages that some sisters here cannot tolerate benedryll. If that is the case, please discuss with your MO on an alternate pre-medication. Again, the purpose of this pre-medication is to reduce chills and colds you may experience during the Herceptin part of the infusion. It has worked well for me, so I wanted it to continue. And it did worked well yesterday too.
My hair are still there…the falling hadn't happen yet. I had long hair but had it cut short back in March. I was supposed to go for my crew cut today, but decided to wait and see what happens next. I must confess that I am not unduly worried about hair loss. I read that most people's hair starts falling between the 2nd and 3rd Chemo session. My MO said so too. I supposed it's vanity that stopping me from getting the crew cut done this week. And I wanted to take more pictures before my head goes all commando on me involuntarily. I also thought I am in no hurry to join Charliz Theron in all the fun in that department. Yeah, I've got my 7 headscarves waiting to be adorned LOL @!@ Is it too optimistic to hope that the hair wont fall off? Hehe...time will tell and I shall be back to share it with you..
Note: I read that wearing cold caps during chemo may reduce the chances of one's hair falling out. My MO confirmed that to be so, athough it was too cold for a few of his patients. If you can tolerate the cold, then try it if hair loss is worrisome for you. At least something positive. Yeah!!
My taste buds have not gone crazy on me, yet. My appetite is still good, and food flavors have not changed either. Matter of fact, I gained about 1.5 kg between Chemo #1 and #2. I suspect the reason my taste buds have not changed is because I drink at least 4 to 5 liters of
water, fluids, soup, fruit juices or combination thereof everyday. During chemo sessions, I would drink up to 1.5 liters between infusion. Whenever I feel my mouth going dry after chemo, I would drink at least 0.5-1.0 liters of water. The reason our mouth gets
dry is because the chemo drugs are soaking up fluids from our body. So we replenish it to hydrate ourself to prevent or reduce side effects. If one's taste buds changed during chemo and one cannot stand the taste of water, try sorbets (no ice cream or dairy based products), freshly squeezed juices (I heard citrus works every time - one must try to find ways to put whatever fluids one can into your body, seriously!). Sure, one'll go a-peeing often, and that's good coz one's detoxifying.
It seems the standard protocol at this Cancer Center where I am at (they have something like 180-250 cancer patients a day!!) that they only give these pre-medications on one's 1st treatment. If one does not show any symptoms of Herceptin allergy, they do not give them on subsequent treatment. But since my Chemo #1 went very well, I asked that this pre-medication continue because during the last 15 mins of Herceptin infusion, I felt cold and chilly as the benedryll have worn off. I talked to a few patients sitting around me during check-in. They told me that they felt so so chilly during their subsequent treatments without realizing that they could ask for this pre-medication's continuance. See, a little knowledge goes a long way, doesn't it?
Now, just behind the registration counter is their pharmacy department which dispenses all the drugs and dosages one gets after they checked one's weight/height for that day (yes, we have to go and weigh ourselves at an automated machine located right next to the waiting reception for correct dosages to be calculated for you). Every treatment has different dosages which means charges are different too) . Also, 2 hours before every chemo session, we have to do a Full Blood Count test to ensure that our WBC, RBC, platelets and other things are within acceptable range for chemo to proceed or be postponed. I always bring my excel spreadsheet and go and talk to one of the Pharmacists (they have like 10 in there) to confirm my day's dosages and infusion time for all my drugs, and that my previous request for the pre-herceptin medications are noted in their system. The Pharmacists here are really good about things like this. Naturally, they will always on be the phone to let my MO knows about my request(s).
It seems many cancer patients don't do this, but I made it a point to create an excel spreadsheet (see pix below) listing all the weeks, types and dosage of my preliminary Treatment Plan (TP) when discussing these with my MO to work out a final TP. Originally, my MO wanted to put me on the 1 year Herceptin TP, whereas I wanted to get the FinHer 9 weeks concurrent Herceptin and Docetaxol TP/ That's because being a HER2+ Grade 3 Breast Cancer , I discovered that the synergy of Herceptin + a taxane drug is more effective than just Herceptin alone. The TP I wanted also happens to be the recommended plan that the New Zealand Pharmaceutical Agency aka PHARMAC offers to all NZ early stage breast cancer patients who are HER2+. However, due to "political pressure" from the PM's office and other self-interest groups, PHARMAC now offer the 12 months Herceptin plan. This request must come from both the patient and their doctors. I think this is wise because then the onus would fall back on the MO + patient should they choose to do the longer TP, and that could result in cardiotoxicity to the heart.
Based on PHARMAC's comprehensive comparison research analysis of 5 MAJOR clinical trials (namely NSABP-B31, BCIRG-006, HERA, N9831 and FinHER), they have found the FinHER TP to be the MOST OPTIMAL TP for HER2+ patients in terms of safety, efficacy and reduced cardiotoxicity to patients. Of course, it's cheaper too because of the shorter duration versus that of the others that wants patients to go for longer treatment plans, which are 12 months to as long as 24 months. Example of my Chemo #1 session, not in NZ$, was about S$2100 at the initial dosage was 4mg/kg for Herceptin + Paclitaxel at 80 mg/m2. There are 8 more sessions to go before radiation kicks in after a 5 weeks rest from chemo. See, I told you I'm pro-active, even about things like this (again see details in sprea
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thank you for posting this. very informative. I did not have to do chemo but if I do in the future, this will be the first thread I will return to. as terrifying as diagnosis/waiting/etc is, for me it lessened as I got educated here. It really helped me knowing in detail what to expect from each procedure.
"After the initial shock and some tears, I decided from that VERY moment on, that I wanted to be in charge of this part of my life's journey. That it was no time for self-pity. I knew that I will be as pro-active as I can. Iwill not accept everything that was recommended to me without understanding why, without checking on its validity. I will guard and protect MY BODY at all times. No one will do this job better and with more enthusiasm than I, ourselves."--my initial self pity did me no good and sent me into a downward spiral. I hope that for those just beginning to walk this path will see your words and it will make a difference in their way of thinking. I know for me I will have to remind myself often to let it sink in to my thick skull!!
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Jeeper4..so very glad you find this post helpful and informative...if you stay focus on what's ahead of you, do your due diligent so you can recover quickly. At times, you may waver or wonder, but don't let those thoughts hold you down. Pushed them aside, and bring out all the positive energies and thoughts you can master, watch "Just for Laughs" on youtube to keep your wits about you..and you will be fine, OK? Go do the things you love, maybe reading, taking leisurely walks, bake, go to movies or theatre or performance with your friends, OR by yourself if you do not feel like having any company, OR go to parks, visit museums and so forth, whatever makes you happy...Please take care always... In my prayer and sending good wishes your way too...@!!@... Came back to send you bunches of orchids below.
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UPDATE CHEMO # 3 of 10: May 11, 2015, Monday
0750 hours - Arrived at Blood Test Registration Level 2 at National Cancer Center Hospital for Blood Test. Already 32 people ahead of me. Waited till 0835 before being called. Results of Full Blood Count posted into their computer system within an hour.
0859 hours - Check-in at Chemo Desk on Level 3. Had weight/height taken with assistance from cheerful young lady at lobby. Info and docs given to her to hand to reception desk to be inputted into computer system so Pharmacist can prepare drugs for this session. Was told to go for breakfast at hospital cafeteria and to report back at chemo desk at 1000 hours..
0905 hours - Had breakfast.
0945 hours - Check back in at the reception counter to check on cost of Treatment #2. Was given similar cost as Treatment #1 though Treatment #2 has lesser mg of drugs. Was advised to speak with Pharmacy department behind reception counter. Brought my spreadsheet to Pharmacy and verify dosage for Treatment #3 and Treatment #2 charges. Also requested reduced Dexamethasone (steroids) from 20 mg to 10 mg due concern about long-term side effects of steroids on body. Pharmacist called my MO who authorized reduction from 20 mg to 16 mg. On Treatment #@ charges, was told it is estimated to be about half of Treatment #1. Treatment #3 is estimated to be similar to Treatment #2.
Went back to waiting reception to wait for my number to be called. Was called at 1003 hours to go to the Jasmine Suite for my chemo.
Duration: 4.0 hours (from 1030 to 1430 hours)
Started 30 mins late due to nurse didn't get IV line correctly into vein on right arm. Tried left arm but couldn't find a proper vein. So went back to vein in right arm was one which was almost straight but at a lower position from the same vein. Was able to get IV line into vein. Listen to music until lunchtime. Sister made pureed basil garlic chickpea pumpkin soup and steamed chickpeas for me. It was simply delicious. Bless her for being so thoughtful and thorough.
All went smoothly, and fallen asleep until the last 15-20 mins of paclitaxel treatment where I felt breathing constriction for like 20-30 seconds. Waved for my sister to call the nurse. Nurses came, doctor-on-call came. Said they will watch me closely. That feeling didn't come back. Continue icing for 20 more minutes after paclitaxel completion. Finish the last of my 1.5 litres green bean soup, and went home.
At home, felt fatigue set in. Had a banana, a mango and a slice of raisin bread. Showered and went to bed for about 2 hours after drinking another 1/2 litre water. Went out for dinner. Appetite still good. Flavor still good. Water still taste like water. Ate a lot. Drank a large cup of barley water. Went home, drank another 1/2 litre of water. Had another banana. Research on necessity of radiation after chemo. Still debating if I want to have radiation or not. Looking for material that justify radiation in view that I have clear margins and negative nodes and felt chemo is sufficient at this time. So far, trials I've found suggested radiation for positive nodes, and could not find any on addressing people like me with negative nodes. Will continue to research this week until I am satisfied so I can make my decision later..
Relax. Had 1/2 litre water and 2 slices of raisin bread. Watched Professional Masterchef, showered, brushed teeth and gargle with biotene before going to bed. Thank God biotene prevented mouth sores. Let's see what the coming week brings.
UPDATE 4: May 12, 2015 (Tuesday)
<<@ 2112 HOURS this evening during shower, THE INEVITABLE FINALLY HAPPENED !!! >>
I began to Experience the side effects (SE) of dexamethasone (steroids) doing its thing - that is sleeplessness. Had a sleepless all Monday night long through early Tuesday morning. Finally, got up to drank 1/2 litre of water, only to discover that my tastebuds had changed slightly. I still feel hungry each morning, and ate my usual breakfast of baby oatmeals /raisins/ cranberries/honey + cut bananas. Food still tasted good and my appetite still good... Decided to read online for 3 hours. Spent the rest of late morning, lunch and afternoon lazying around and surfing the web, watching Ellen DeGeneres and so forth... Had dinner of broiled broccoli, bread and rice.. rested before deciding to show. And then bang! It finally HAPPENED!
At exactly 2100 hours, while taking a shower, I decided to wash my hair. As I started massaging my scalp with shampoo, I felt strands and strands of hair started falling and floating all over my neck, my chest, my lower body and then down my legs. It dawn on me that the inevitable has finally happened.. I saw hair ! hair ! hair ! all over the shower floor . For a brief moment I felt disheartened....so I just let the water flowed over my entire head and body and stood savoring of whatever hair I had left. Yes, I cried a little too. I must have stood for about 5 minutes, then quickly finished showering, patted myself and my hair dry, and got out. Then I text my brother informing him that it is time for me to head to his hair salon first thing tomorrow to have my commando cut.
I realize this day would be another milestone in my life that I shall never ever forget. Who wouldn't? I tell myself that it's only temporary, and that my hair will sprout again in about 4 weeks' time, more beautiful than ever....
UPDATE: May 14, 2015 (Thursday)
Met up with my SO & OPS this morning at their Executive Meeting Room today. I had agreed to join them for an interview with the Press to provide a patient's perspective about the Round Block Method of Breast Conserving Surgery (BCS). The Oncology department wanted to share with The Press about options available to breast cancer patients suitable for lumpectomy, and to encourage potential patients to consider BCS instead of mastectomy. The Press conference went quite well, and I was happy to contribute.
Mid-afternoon, fatigue started to set in. I slept most afternoons and evenings. Had dinner and went straight to bed till late morning the following day. Never ever slept so much in my entire life...I suppose it's inevitable - and I'm not complaining.
UPDATE: MAY 15-16, 2015 (Fri/Sat) - Noticed that my body is becoming even more lethargic....but made myself go for an hour's walk by the river early in the mornings. Did another hour of stretching exercises late morning at the National Stadium about 20 minutes' away. Walked home from stadium, then showered. Felt totally exhausted... Slept for 3+ hours....had some light snacks...and ate mostly bananas... Body felt somewhere sore and achey.Hair continues to thin. I have to say the crew cut did made me look like Sinead O' Conner, and I did like it.
May 18, 2015 (Mon)- Did FBC test that morning, followed by a visit @ 1400 hours with my MO. Was told that FBC result showed a mild liver inflammation that they will keep an eye on, and not to worry. Was given appointments for Chemo #4, 5, 6 every Tuesday mornings at 1000 hours. Began to experience sleeplessness.
May 19, 2015 (Tue) - Did Chemo #4 + icing as usual. Everything went as per normal. Drank lots of fluid daily (about 4 litres). Breakfast of Oatmeal with dried fruits/honey/banana daily. Started adding delicious mackerel to diet. Increased exercise duration. Breast reconstructive surgery scars healing nicely. Continue using Mederma scar cream around areola and SLND scars. Scars seem to be fading nicely thus far. Sleeplessness reduced with the reduction in dosage of pre-paclitaxel medication dexamethasone (steroids) from 20 mg to 16 mg, and from 12 mg to 8 mg (minimum needed to counter taxol SE). Hair loss continues. Crew cut makes it less visible... Decided to take lots of selfies for keepsake, and adorn my head with different accessories, bandanas, etc. and sent pix to my friends around the world, including Canada, the US, UK, Singapore, Hong Kong, Beijing, Malaysia. Virtually everyone text back that they love my new look !! It was fun receiving all sorts of emoticons... and Zumba classes this week was terrrific!
***UPDATE CHEMO #4 ***5/19/2015, TUESDAY
Continue to lose my 2-3 mm hair daily (80% gone now). Every morning, I have to use a sticker roller to clean out the hair off my bed, pillows and floor. My scalp has patches of hair here and there such that my head looks like some sort of artwork. Taste buds still OK. Still lethargic. Visit loo often due to good amount of fluid intake. Same nightly routine. For the rest of this week, appetite remains good. I have begun to drink freshly squeezed citrus juices - oranges, grapefruits, lemons.
*** UPDATE CHEMO #5***5/25/2015, MONDAY
MON > Took longer to start due new nurse unable to locate vein in lower left hand for IV line. Met my chemo ward resident doctor for the 1st time. Wow, what an inspiring, terrific and determine guy - survivor of polio at age 2 and Stage IV leukemia cancer as well !!! Being wheelchair bound did not stop him from loving life! The nurses told me that every year, he uses his annual leave to run marathons in different parts of the world to raise funds for charity - for different cancer org and for children stricken with cancer. What an amazing person!
This week, I experience mild diarrhea. Luckily, it's the sort that's controllable. Sent an email request to my MO requesting a standing release of my FBC so that each time before chemo, I can get a hard copy that day to enable me to track changes in blood count, platelets and other info.
FINALLY, all my hair is totally gone! As were my underarm hair, my nose hair and 75% of pubic hair. My eye brows are still there but thinning. My abdomen seems bloated and digestion slower today. Experiencing loads of gases. Feeling uncomfortable most of the day as a result. Didn't eat well for 3 days this week. Mild diarrhea continues throughout week. Laze around most of day as body didn't feel like it want me to do anything. Tried sleeping in a reclining position. Unable to sleep since bloating did not subside. Got up and mixed 2 cups of probiotics yogurt with honey, ate, and gargled mouth with biotene. Was able to sleep thereafter. Forced myself to do some exercises.
Below is a picture of the Chemo Room. The seats are comfortable and adjustable to a sleeping position if one wishes. Directly in front of every seat up above the ceiling is every patient's exclusive TV to watch any shows, movies or news they want. Everyone is given a earphone too. There are curtains between all seats. If one wishes to have privacy, these curtains can be drawn. Visitors and their families are respectful of others and do not talk loudly.
Note: Chemo #6 and #7 update posted at below this thread.
As always, thank you for visiting this thread...sending good wishes to fellow members undergoing chemotherapy as well. Have a great journey
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Glad I didn't go to your Facility - too much wasted time.For me, the procedures were a little different between the 4 DD A/C and 12 weekly Taxol but only in that I saw Dr T. before each A/C and every other time on Taxol. How I reacted to them in as very different though.
Would check in at the Check In desk. They would notify the 'Blood Tech' and in about 5 minutes she would come out to get me. Would go back to Lobby and sit down and on Dr Days' in about 5 minutes, Dr. T's RN would come get me to go back and get vital's/weight/any things you wanted to talk to him about and shortly he'd be in - sometimes he'd be in before she left. After seeing him, back to the Lobby and sometimes one of the Chemo RN's would be waiting for me, sometimes would have to wait a couple/few minutes before she came for me. Then back to either a recliner cubicle or glassed in bed d cubicle. Would get the BP/HRP/temp machine hooked up and establish the IV line and flush it (I have a port so no issues getting IV established). Would also get me warmed blanket(s) and soup, fruit, cracker, beverage, whatever I wanted then. By then another RN would come to the cubicle with the meds and they would both varify that everything matched me and that the meds ordered matched what they had. With A/C, some of the pre-meds were oral and some IV but with Taxol all were IV. I always run below 'normal' temperature wise so warmed blankets were needed. For Taxol, I had to have one of the glassed in bed cubicles as they each have their own thermostat so the temperature can be controlled so mine was raised a lot plus the warmed blankets. The bed was necessary also as soon as the IV benadryl started, I'd go 'nighty-night' til 20 minutes before the end of the infusion and wake up as alert as I had been before. On the weeks on Taxol that I didn't see Dr T I would be weighed on the way back to cubicle.
A/C was very easy - did not slow me down at all. Scalp hair and 1/2 of brows/lashes did fall out, lost appetite, lost senses of taste and smell. Taxol left me completely and utterly exhausted to the point I basically existed either in bed or on couch in front to TV but started going away a week after last infusion. 1/2 way through Taxol my K (potassium) level plummeted and had to go on mega doses of K to keep it up to normal - today even after 5+ yrs, I still have to take K to keep it up to normal.
We all have to remember that there is no 'One Size Fits All'! We are each unique in so many ways. No two of us have exactly the same DX though some are similar. We all come to this battle in different health and that can effect what TX plans can be done. (Other than some arthritis in upper back and osteopenia, I was and still am VERY healthy.) Our journey down Life's Road has been different and our Faith, or non-Faith, play upon how we deal with this (or any) battle for our Life. Our Drs are also different and the TX is not always the same. (Mine was different than most other IBCers - I did neoadjuvant and adjuvant Chemo while most do 2 neoadjuvant and no adjuvant.). Point is - our experiences are ours - no one else will have exactly the same experiences though there may or may not be similarities with others.
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Yes, everyone's experiences are different. In the end everyone makes our own decision wrt the kind of treatment they want to go with. In regards to my facility, I wouldn't consider what they do exactly a waste of time. There are, after all, between180-250 patients daily. I, for one, prefer to look at things from the positive perspective. At this center, it gives me the chance to talk to other patients waiting with me, and learn from their experiences as well. I'm grateful of these opportunities. The reason are that when one sees other patients who are in a worse off situation than ourselves, it makes us realize how lucky we are, and how important that we need to be more emphathetic towards our fellow members.
I provided feedback to the Cancer Center whenever I could. In the end, it is a Center with 1ST CLASS facilities, where the Doctors & Nurses are CARING. THIS ALONE far outweighs any other disadvantages...I am certain you read the many discussion pages here where you'll hear stories of so many of our fellow members who either have to wait a long time for results, or call and call and left messages, or who were stressed out by unresponsive doctors or medical offices that do not get back to time on a timely basis.
If you had read my timeline, you will surely noticed that things move along rather quickly = efficiency. Would surely like to read a summary of your timeline that you've experienced
Still, wish you continue good health and life's enjoyment. Have a terrific summer.
P.S. Even while in chemotherapy currently, I started going to Zumba classes twice a week, and is intend on learning a musical instrument by the end of this year. No, my enthusiasm for life has not dampened because I have BC. On the contrary, it is making me even more determined to live and cherish life
)
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My 'timeline' has been written here MANY times over the years but here it is again.Late June '09 - annual mammo, as had been for years with no issues.
July 31 or Aug 1 - found a lumpthe size of an almond under arm that had not been there the next the night before. My PA was on vacation so it took a week to see her.
Aug 7 - saw her at 11 (node had continued to enlarge). She had me in the Radiology Clinic at 1 that afternoon. Immediately an US and biopsies followed.
Aug 8 (Fri) I got a call from the Radiologist that the path. was IBC (as expected).
Mon - I saw my Surgeon
Wed saw my Rads Dr
Thurs saw my Chemo Dr
Full body CT, MRI, Bone, PET scans followed rapidly. A spot ' lit up' on PET on my lower jaw so it was biopsied immediately (had path.almost immediately - nothing there). Also had an EKG.
Port implanted Aug 24
Started 4 DD A/C on Aug 25
Oct 21 - 2 weeks after last A/C had UMX
Nov 11 - started 12 weekly Taxol 3 weeks after UMX
Feb 4 - a week after last Taxol started 25 rads
Feb 11 - started Femara (not available in generic letrozole form then)
So - 17 days for DX to starting neoadjuvant Chemo (24 days from first 'sign')
The time frame/prognosis/TX is so different for the different types. IF I had chosen what you did (which was 'right' for you I would not be here today - but my TX would not have been 'right' for you.
PS - I already play piano and organ, I ride/train our horses, ride my bicycle, now my yard and others to help them among so many things I do. No I don't do zumba.
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Aren't we truly blessed to move through the system so quickly in our part of our journey? Let's pray it will be the same for many of our sisters out there....You must have nimble fingers to be playing piano/organ, something I find hard to do, not because of un-nimble fingers but the reading of those notes! LOL. Hats to you. Well, I'm doing zumba because I want to build up my stamina so much so that I can take the instructor's certification, and then try to design a class appropriate in speed for cancer patients in my area.. It' progressing slowly but surely....
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Hello Everyone, especially New Fellow Members:
Found this link below where you can also get A COMPREHENSIVE EDUCATION about cancer. Everything they have in there were written by experts that can quickly bring you up to speed.. It even has a dictionary of cancer terms right at the bottom ^!!^
http://www.cancer.gov/resources-for/patients
All the Very Best to YOU and Your Family
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*** UPDATE CHEMO #6 *** 6/02/2015:
TUE > Wow, it took a long while for the nurses to try to find my vein for today's IV line. Apparently, the basilic veins (see pix below) in my lower left arm are deeper, making it somewhat difficult. So, a heating pad was brought and placed on the arm. When asked, was told that this expands the vein making it easier to find. Our attending nurses are generally not the same each week since there are so many cancer patients daily at this Cancer Center. I did not want the IV line on my lower right arm today because alternating the arms are better to prevent our veins from hardening. And it must never be done at the same location of that previous vein. It can be done an inch above or below the last point of the same vein, but not at the exact location. Doing so would damage the vein, hardening it and will take a long time for that basilic vein to heal. I didn't have a port put in because of my short 12 weeks chemo duration. It would be worth it if one's chemo is 6 months or longer.
Note: If one has an axillary dissection (ALND) done, it is good to remind the nurses as that arm should not been used for IV infusion, for drawing blood, for vaccine shots, including not lifting anything > 5 pounds etc. If one has ALND on both arms, then a port may be needed. I'm sure your MO will discuss these with you. As I did not have ALND, my arms are fine - although the loss of 1 sentinel lymph node causes the right arm to feel not fully normal :-((
Putting the IV line on the back of both my hands are out of the question as I needed to wear food gloves to ice both hands to prevent neuropathy. Eventually, Senior Nurse Myra was called in to help. She noticed brown coloring on previous locations of both my lower arms where the IV line were taped down. Apparently I had allergic reactions to the regular IV tapes (i.e.Tegaderm Film, see pix below) and weren't even aware of it. She then instructed my attending nurse that day to make a note in my patient file that wef today, only the IV 3000 Ported 7cm x 9cm tape be used (see pix below). I asked what that was, she said it's for patients who have allergic reactions to regular tape. Wow, was I glad she caught it even though I've been wondering about marks (see pix below of those darker marks on my right arm). They were red for a day or two after chemo, but not itchy. Senior nurse Myra also informed me that she has decided to use a finer size needle (0.017 mm) instead of the usual size IV needle on my thinner veins. This also result in a slower infusion rate and is less damaging to these thinner basilic veins.
New hair growth seem imminent. Bloating seemed to have disappeared. Nose hair all gone (now gotta wear mask). Appetite back to normal today though not as hungry as in the previous 5 chemo. Thus eating less. Noticed skin now prone towards breakage during shower, so stopped scrubbing body, only allowing the warm water to run through body. There were some mild non-itching hives on appearing on both arms and front of thighs. Applying deep moisturizing cream several times daily appears to help. Exercise as per normal. Appetite normal. Taste buds normal.
6/08/2015: MON, Blood Test & follow up visit with MO.
RBC, WBC and platelets within range except for the mild liver inflammation. Though it has improved since the last time I met with my MO, he said there isn't any cause for concern, which was good news. He has already scheduled me for an early consult with the RO next week to talk about radiation therapy. Radiation therapy will occur about 4 weeks after my chemo ends to give my body time to recover, he said. When I told him that some fellow members at our site were sent for radiation therapy immediately after lumpectomy and/or reconstructive surgery without recovery time, he said that is foolhardy and painful to patients. A 4-5 weeks recovery time is generally recommended. Protecting our body is so very important. It seems we shouldn't allow ourselves be put in a position of convenience to others at the expense of comfort and benefits to ourselves. Thought I just wanted to share this piece of info. Of course, you would be the best judge of your own situation. In regards to the hives on both arms and thighs, MO suggested using baby body wash if needed.
Continue exercising and going to my zumba and kick boxing weekly classes at the National Stadium. Joined the gym membership at the community center today since it's only a 5 mins walk from my home. Decided that I will start working to get my biceps/triceps and my abs back into shape now that I am stronger. Just hope I have the discipline to go there every day for a 2-hour work-out. Was told to do biceps/triceps every other day, and abs every alternate days. Will do my best to get back into shape, esp since I've put on 2.5 kg already. I need to lose about 25 kg in all, and I really want to achieve this goal.
** Pix below is an example of the 3 types of catheter/port locations available at this Cancer Center. Different hospitals may use different types. Please check with your MO's office. If you google Ports For Chemotherapy you will find a host of other different devices.
1) Implanted port aka port-a-cath (the one closest to you on the right side of this mannequin). This port is an estimated 1 inch round disk that is implanted under your skin (that flap lying down is the skin where it will be stitched back. How may stitches, how large, degree of pain if any, recovery time etc. - that you need to ask your MO for specifics). Surgery is needed of course. There will also be scars of course. It must be cleaned and there's a charge, I believe. I didn't ask for details since I wasn't particularly interested.
2) Will come back and complete this info as I had given the flyer to another cancer patient when I saw that the veins in her arms had hardened while we were waiting at registration desk. She was not aware she can ask to have a port implanted. She said it's probably because her English weren't good that she may not have understood it when they might have asked it of her. Since she has 8 more months of chemo, suggested that she ask her MO if she can get one. Of the 3 port, I thought the middle one (as shown on the right side of the mannequin) would be the best one to do and maintain.
3) Will come back and complete this section later. This is the one that on the right lower arm of the mannequin.
Below is a pix of the location of veins in our upper/lower arms. My IV line is usually placed between the elbow and wrist, and not the back of my hands. I requested it to be so because I need to wear gloves for the 2 hours icing of my hands to prevent post-chemo neuropathy.
Below is a pix of my right lower arm that shows the brown imprint left by the regular IV tape, on center right between the elbow and wrist, from the previous 5 chemo. Now, only the non-allergic IV 3000 tape is used, and I no longer have those brown marks. By late June, all the old brown marks on both arms have faded. Please note that I alternate my arm for chemo infusion each week. Since different nurses attended to me each week, I have to ensure/remind the nurse not to use the same vein for the IV location. Doing so would cause a hardening of that vein that could result in poor blood circulation later. The hardening will heal over time if you make it a point to ensure that. Again, protect our body, always, always, always.
Below is a pix of the regular IV line tape called Tegaderm. It leaves a brown spot on my right arm above. So it was changed to the non-allergic tape, the IV-3000 (see pix below). As a reminder, anyone who have had axillary lymph nodes taken out from your arm(s) cannot have an IV line to that arm - which means one has no choice but had to have a catheter put into your body. Different types of catheter will be offered to you at that time.
Below is a pix of the non-allergic IV 3000 I.V. line tape. This IV tape leaves no brown imprint on one's arm. Nurse Adele told me that there are a few patients who cannot have any tape due to their super-allergy tendencies. So, they ended up using gauzes to tape the I.V. line down.
*** UPDATE CHEMO #7 *** 6/09/2015: TUEToday's chemo went smoothly, and ended sooner. Brought my usual 1.5 litres homemade green bean juice to drink between infusion. I asked for the smaller size IV infusion needle that was used in my 6th chemo. This decrease the infusion speed of the drugs, making my chemo much more comfortable throughout. I also reminded the new attending nurse of the IV3000 tape that should now be used on my arm, and not the regular IV tape as the one in my box. Because this center has many cancer patients daily, and from where I am seated, I can see that the nurses are rather busy attending to 5-10 different types of cancer patients every day. So I can empathize with their situation. Each time before dispensing our drugs, the nurses will re-confirm our names and ID # to ensure there is no mix-up in drugs given.
Great news! Confirmed new hair growth@
Thanks for visiting... Sending good wishes to all my fellow members currently undergoing chemotherapy too...
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I am very surprised that the Center you go to would use the surgery side arm for infusion after having had a lymph node removed. I'd worry about how competent they were to do an infusion if they didn't know to not use an arm that has had surgery with even 1 node removed. Didn't they know who/what 'me' was being treated for?LE (lymphedema) can develope after ANY surgery, even when a node(s) aren't removed. Chemo and or Rads can also contribute to it. Have you yet seen an LymphEdema Therapist? One with documentable education - not some PT who 'claims to know ALL about LE'? ANY surgery or traumatic injury can result in LE ppresenting - even when nodes (or 'only 1 removed') are not removed. The potential for LE raising it's Ugly Head is not limited to only those who have had 'axillary dissection'. BP/IVs/blood draws/vaccines should not be done because the potential is always there. Also seeing an LET is important to get education and measurements.
Ports - I have a Bard Power Port. It is a purple triangle. Thescar from when it was implanted is about an inch long and is a 'hairline' that I have to really search for to see. I had no external sutures - internal with surgical glue externally and 2 butterflys.
What your Dr may say to you is not necessarily appropriate for all! We are all unique, no 2 of us are the same - even within out BC type. My TX plan was different than almost all other IBCers - it was my Drs TX plan and it worked for me - Aug will be still NED at 6 yrs Dx.
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UPDATE: CHEMO #10, 6/30/2015 (Tuesday) >>> F I N A L L Y, M Y *** L A S T *** C H E M O <<<
Originally, my last chemo session is scheduled for July 14th (12 weekly sessions). However, after Chemo #9 on 6/23/2015, I felt like I have had enough of chemo drugs in my system (being infused over a 2.5 hours each time, although in actuality it generally takes from 3.5 to 4.0 hours, because of recovery time, going to toilet time, and trying to find my basilic vein time etc)... On my follow up visit with my MO this past Monday, 6/29/2015, I was going to let him know that Chemo #9 would be my last.
Since there are only 3 more sessions left, he asked why not finish it? I gave my reasons as stated above. Finally, just to make him happy, I said I will do one more session, Chemo #10 and that's it. Tho he classified the non-completion of my 12 weeks treatment as sub-optimal in his report, I won't hold it against him (for me it's subjective anyway, based on my research). I've thought long and hard about it a 2nd time, and am still comfortable with my decision.
I have also come to the conclusion that THE LAW OF DIMINISHING RETURNS** in economics also applies to chemotherapy as well.
** Defined as: As more investment is made, overall return on that investment increases at a declining rate.
My interpretation of this law (which I call THE LAW OF DIMINISHING EFFECTIVENESS) in terms of chemotherapy is that "as more and more chemo drugs are given, overall effectiveness of these drugs increases at a decreasing rate so that beyond that certain amount, chemo drugs become more harmful (toxic) and less beneficial to the patient ." Again, this is only Yours Truly's believe.
Another reason is that since I've decided to also do radiotherapy now (starting August 11,2015), I see no reason in having more chemo drugs than needed put into me. Thus, my MO signed off on it, and here I am, at the Jasmine chemo ward at 10 past noon, Tuesday of June 30th, 2015, seated at J14 doing the last of my chemo.
While waiting for my usual blood pressure to be taken, and for my now favorite Nurse Myra to come and put the IV line in for me, I suddenly felt somewhat emotional. On the one hand, I am glad that the 2nd leg of my cancer journey will be over after today. On the other hand, I knew I will miss the many other cancer patients whom I've met with, talked to, laughed and shared information together. It was some sort of unspoken kinship we have whenever we see or run into each other, at any part within the Cancer Center. Our different types of cancers have brought us together.
At each of my chemo session over the past 10 weeks, whenever I looked around the chemo ward, I would make eye contact with my fellow cancer patients. We would smile at or nod to one another, silently encouraging and sending good wishes and strength to each other. I was always happy to see my fellow cancer patients, no matter their age, new or regular... Sometimes, their kid or family member would stop by my seat to come talk to me, for which I welcome.
For example, while waiting at the chemo ward registration for my turn to be called, a Brunei family of 4 were seated behind me. The mother smiled as I sat down. I asked how she was. She looked nervous and said it's her first chemo session. I asked if she knows what drug(s) she will be given? She had no idea as her English wasn't good. So she woke her teenage daughter up. I repeated the question, but the daughter said they have no idea either. I explained that if she wishes to know what drug(s) her mother will be having, or how long her chemo infusion is, and what side effects the drug may cause, she could take her mom to the pharmacy behind the reception and asks to speak to any of the Pharmacist there. Thst the latter will gladly and patiently explained it to them. So they did.
About 10 minutes later, I saw that their number was called, and went to inform them. Shortly afterwards, my number blinked. When I entered my ward, the mother waved to me. I pointed to where my seat was, and she nodded. 30 minutes later, the daughter came to my seat and showed me the name of the drug her mother is having. I took a piece of paper from my backpack and wrote www.chemocare.com down, and suggested she visits the site so she can read up more about all the drugs. That site contains a very comprehensive info of every chemo drugs, including its side effects, precautions to take, self care tips, monitoring, etc. Told her that the more she knows, the more she can help her mother since her father cannot speak English. She further asked what the 1.5 liter of green colored fluid is that I've been carrying. I explained it's my green bean soup that I made every morning tgat I will always bring to drink during chemo infusion to hydrate my body. In addition, it helps to reduce side effects for me. This soup is well known in TCM to detoxify the body. She asked me for the recipe (see below) and I gladly shared it with her. She thanked me, shook my hand, brought it to her lips and kissed it. I was surprised, and later discovered that in her culture, it's their way of respectfully thanking someone older than her
After my pre-medication and recovery time, my attending nurse came quickly to start my Herceptin infusion. 15 mins into treatment, I looked up and saw a lady in a dark dress standing next to my seat. She asked if she could speak to me. I said of course, and invited her to have a seat. She said she heard me talking to the young lady earlier about how to cook the green bean soup. She too had heard about its detoxifying abilities and wanted to know how to cook it. Naturally I obliged. I found out that her husband has nose cancer. According to her, his pessimism, edginess and change of temperament made their life miserable. It seems they sold their restaurant business after many years of hard work, and they were looking forward to travelling around the world to enjoy the fruits of their labor. Just before they leave, her husband's ear went deaf.
During an examination, it was found that he's got nose cancer. Naturally, their plans are now in ruined, and they have to deal with it. I took out another piece of paper and wrote down the National Cancer Institute website for her so she can read up everything she wanted to know about nose cancer under Nasal Cavity and Paranasal Sinus Cancer. Hopefully, she can find something of use to her and her husband. She thanked me and went back to her husband's side.
These are just 3 of the many different fellow cancer patients I met whenever I come for my chemo treatment, including those with lung, liver, ovarian, bone and other forms of cancers. I didnt mind speaking with my fellow canver patients, or listening to their stories.. After all, while waiting, we have lots of time on our hands. None of us are here by choice. Why not learn something about others? Maybe I'll even learn something along the way... I will cherish all these moments.
Even as I'm writing this, I kept thinking back to a young mother I met several Chemos ago, with her 6 year old son in tow. We were seated next to each other with a column between us, waiting for our follow up visit with our respective doctors. By chance I looked to my left and she looked up to her right. Our eyes met simultaneously and we smiled at each other. I asked how she was.. She quietly said "I've got Stage IV BC, and it's spread to my liver..." I felt so terrible for her pain, yet admired her courage at the same time. We talked for a little while longer. She told me she wanted to be on the immunotherapy clinical trials here but did not qualify. I ask her not to lose hope, and got her email so I could send her links of NCI, SITU and The Cancer Immunotherapy Trials Network's trials so she could write to them too. That was all I could offer. .I truly truly wish her well in my thoughts and prayers...I plan on emailing after I am done today.
Overall, my chemo journey has not been as bad as I had expected. For that, I am truly, truly thankful. However, I also believe that some of the things I did before and during chemo helped to reduce the overall SEs that I would have gotten had I done nothing. For instance, a month before chemo, I started taking supplements that builds up my immune system as well as OPC-3 anti-oxidants on a daily basis. When chemo started, I made sure that my body is hydrated daily with 4-5 liters of fluid (water, soups, green bean soup, juices etc) to counter the drugs, especially in the initial 5 chemo sessions. I did not take supplements on chemo day or day after, but continue thereafter until before the next chemo day so as not to interfere with the drugs for that 2 days. I kept up this routine consistently. Throughout it all, my appetite has remained steady and good, as did my taste buds, which was unchanged.
Fortunately, I did not get tired easily. I gargled my mouth with Biotene 2-3 times a day to prevent mouth sores and it has worked thus far. There were a few days of very mild diarrhea in one week, but it was quite manageable, and an occasional fatigue here and there that did not prevent me from doing my weekly zumba or kickboxing exercises or daily evening walks by the river.
However, by the time Chemo 7 and 8 came around, I found my energy level not as good such that zumba and kickboxing became a little exhausting. So I switched to working out at a gym, doing muscles building and workout exercises 3-4 mornings a week for 1 to1.5 hours. I adjusted my schedules so that I sleep an hour or two longer. Before, I used to get up at around 0730-0800 hours. Now I let my body dictate the amount of sleep it needs. This seem to work too.
I supposed the accumulation of so much drugs over 10 weeks, no matter how good my body was in the initial 50% of this chemo journey, at some point is bound to hit me later. Thus I surmise this is what is currently happening to me, from these last few sessions....I kept reminding myself to think posit8vely. Good thing is that I have about 5 weeks to recover before heading into 3 weeks of weekly radiation therapy.
I'm so glad it's not a long radiation regimen - 2 weeks of daily 10 mins session on the whole breast and 1 final week of booster to the location where my tumor was previously.
I had thought that since Tuesday was my last chemo, I need not paint my nails black. You may have read in one of my chemo notes that taxane drugs such as paclitaxel and docetaxel can result in nail sensitivity to light, resulting in cracked, blackened or warped nails.
I had read somewhere that by painting one's nail black, this will help prevent those from happening. Well, I did paint my nails black throughout it all and it worked - meaning it was looking good.
However, last night, I foolishly took off my nail polish thinking that I don't need it anymore. When I got up this morning, the edges and some center secti9ns of my nails started cracking!!!! (see pictures below). That's because my bed is next to the windows which fully facesthe light.
I quickly drew the curtains, trimmed off the nail edges, and re-painted them with dark nail polish. I think I will do this for another week or two just to ensure that the taxol has left my body. I will report back later as to what happens..
My hair has grown to about 2/3 inch now,just evenly, lightly all around my entire head. I still wear my headscarf when I go out. I made sure to apply lots of sunblock on my face and hands. I discovered one of the good things to come out of this chemo is that most of the brown (age) spots on the back of both my lower legs and front of thighs are gone.
With respect to the icing of both my hands and legs to reduce/prevent neuropathy seemed to have worked. Soaking them in cold, cold, cold ice water up to my ankles for 2 hours during the paclitaxel portion of infusion (actually, 30 mins before, 60 mins during, and 30 more mins after) proved beneficial after all. My fingertips, however, do experience mild numbness or tingling occasionally, esp after Chemo #9.
My MO said I should have soaked my entire hands in the ice water, not just my fingers...so I did not do it exactly right. Since this. only occurs after chemo #9, he said to give it time and that that may not last for long...we'll have to see. It hasn't affected my ability to write or type or eat with a spoon or fork. and I will come back to this thread to report back after some time.
My lumpectomy via the Round Block method is still healing slowly and nicely...It has settled into a size 36D (versus my original 38D).
During my 1st consult with my Radiation Oncologist (RO) this past Monday, I found out that there were metal clips inside where my 2.5 cm tumor was taken out. I emailed my Oncoplastic Surgeon asking about it. She replied in the affirmative and that there were six 3 mm size clips in. I asked why? Apparently they are there to facilitate the accuracy of radiation to my whole breast during therapy, and that it's a standard procedure.
I've always wondered about it when I massaged my breast each night feeling some hardness, Now I know why I cannot lay on my right side for a long while. Which also explains why it gets sore after a while. I will follow up to see if these clips can be removed after the completion of radiation therapy.
Anyway, my RO stated something of interest. He said some large breasted patients of his ended up with their breast being one size larger after radiation. I asked "Really?" Well! You know what that means right? :-))
Well, that's all I could think of for now...I'm getting some amount chemo brain in that I feel my head is heavy from the accumulation of 10 weeks of chemo drugs, haha...:-D..So I will lie down a bit for now...I know it will go away eventually...so, I'm not worried about it :-)))
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UPDATE: 07/04/2015
- Happy 4th of July to everyone. Hope you all had a swell one....
This past Fri/Sat, the food I ate started to feel tasteless except for most fruits...and I found that I needed longer sleep. My energy level isn't as good as before Chemo #9....In fact, it has fallen to my lowest level ever!!!. Previously at the gym, I was able to do 3 sets of 20 of different weights exercises without any problem However, after the last chemo #10 especially, I can only do 2 sets of 12-15. I also exhausts easier now....I feel somewhat disappointment but have to accept the fact of the full force of these chemo drugs is finally doing its stuff in my body.
The Law of Diminishing Effectiveness came to my mind then....I wondered if I had inadvertently caused problems for myself by agreeing to go for that 1 more chemo session? I began to feel the full force of the accumulation of 10 weekly 2.5 hours chemo infusions....My mouth started tasting more chemical and dryer than it had ever been.... So I continue with hydrating myself even more.... This is more pronounced at night where I have to get up hourly to drink my green bean juice to reduce the unpleasant taste, and getting the drugs flushed out of my system as much as possible.. I even felt these drugs sucking every part of the fluids inside my body even during sleep...This made me more determined to do whatever I can to keep it from happening. I continue taking my supplement intake of OPC-3s and immune system booster now include fish oil as well..
As each day progresses, I'm more convinced than ever that the over medication of chemo could have contributed to my sudden decrease in strength... I believe our body's reaction is its own way of telling us when we get too much of something...
I've also discovered that that after chemo 10, my sweat stinks like crazy...I mean not the usual sweaty smell, but the really, really toxicky, chemically, stinky smell that even I can't stand it that I have to take several showers a day to get rid of it...The same happens when nature has to call one away. It was exceedingly bad...The good thing to come out of this is that these toxins are being discharged from the body. So, drinking lots of fluid helped to make it bearable..
WRT radiation down the road, my RO finally replied to my email seeking clarification as to the amount of radiation dosage I will get. Radiations dosage are measured in "Grays or Gy." I shall be getting 40 Grays over that 3 weeks period. That's good as it is not a high dosage. Our own site here has a great article on it about rad dosage. Worth reading.
*** HOW TO MAKE GREEN BEAN DRINK (Pix Below)***
1) Wash 2/3 cup green beans in water, at least twice and pour into a pot.
2) Add 2 liters of water into the pot. Turn to high heat, and let it cook till boiling. As soon as the water starts boiling, set it to low heat and let it cook no more than 12-15. minutes. Do not overcook beyond thst because if it does, it loses the detox quality and becomes a cooling soup for a beats body. Dont let the souoturn too green brownish color. If you time it correctly, it should come out golden yellow. If it is light green, still OK.
3) When the beans are cooked, , turn off the heat. Do not cover the pot. Use a sieve and scoop up such that it filled 1/2 or 1/3 of the sieve. Use the back of a large ladle or spoon to crush the beans. Then soak it back in the soup, You want to extract the nutrients from inside the crushed beans. Continue until most of the beans are done.
4) Scoop out and discard all crushed beans. If you like to eat it, leave it to cool and then refrigerate.
5) Leave the soup to cool. When cool, fill it into your container or chill it in the refrigerator until you are ready to drink or take it with you on chemo day.
Note 1: On occasion, I will forget to do it the day before. So I will get up very early and cook it. To help cool it down, I fill a basin with 1/4 water, set the entire pot into the basin, and add ice around it. This really helps cool the soup down quickly (transfer of heat from pot to water in basin). When water in basin is warm or hot, I discard it and refill it, set the pot in it again, and re-fill it with ice. It never fail to work, and I was able to leave for my early morning blood test and chemo session with my drink.
Note 2: Please do not add any sugar in it. Under normal circumstances, we do add rock or brown sugar. But since sugar feeds cancer, NOTHING IS ADDED TO IT. We will drink it in its natural flavor until we are done with chemotherapy, and then some. If you add sugar, it will be totally futile.
Note 3: If you want a really thick flavor, you could put the cooked beans and soup in a blender, and consume it that way...but during chemo infusion, I find it easier to just drink the soup. If it's refrigerated, I would normally leave it to room temperature. It's better to consume unchill for chemo. Under normal circumstances, we can drink it hot or cold.
Note 4: I have also started to make and drink barley water to add variety to my sources of fluid intake. Again, no sugar added.
Note 5: If your green bean soup turns red, that means you've overcooked it. Still drinkable, but less nutrients.
Hope these info helps.
Above is the 1.5 liters Green Bean Drink I take with me to my chemo infusion each time. I also brought food to consume so my stomach wont be empty during infusion. I'm gonna start adding homemade barley water to my fluid intake too to see if it will make any difference.
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Update: July 9th, 2015 (Thursday)
Follow up visit today with both my Surgical Oncologist (SO) and Onco-plastic Surgeon (SPO) consecutively. Both Doctors checked my right breast and are happy that is it continuing to heal nicely. When asked how long the scar around the areola will heal, was told it would slowing fade from about 8 months to a year. Was also told that radiation will help speed up the scarring, though it could result in a slight hardening of the breast. Now, this explains why the breast could go back up one size after therapy. I found out too how the hardening of the breast can be avoiding during radiation. I will write this during the 3rd leg of my journey under "Radiation Update."
Also asked about the 6 clips that were placed inside my right breast during re-constructive surgery, and asked to see what they looked like. Before seeing it, I was told each was like 3 mm. They are used to help find the location of the tumor with accuracy during the last week of rads boost to that location. I've been imagining it to be like a tiny rectangular metal there and didn't feel comfortable. However, having finally seen it today, I felt extremely relieved. There are only about 2 mm about the size of 3 grains of sand (see the diamond like grain below the arrow) and of titanium. Considering that they are not as big as I had imagined, I guess it's OK not to take it out. I was also told that it wont heat up during rads, nor will they cause any problem if I am going through a metal detector at the airport. That's most certainly a relieved too.
Since my Medical Onc is out on vacation, I decided to ask my SO about my decrease in energy level, stamina and strength, She said that I'm currently experiencing the FULL FORCE of the Chemotherapy, and that it will take about a month for all the drugs in my body to be discharged. She advised that I go back to doing daily walking exercises instead of gym workouts...I informed her that even waking seems like work now...she said I must do it to keep up my energy and stamina even though I don't feel like it now.
I shall be going for my post chemo full cardio-toxicity test next week, and a follow up visit with my MO the week after. Now I understood why this test is being given 2 weeks after chemo...Will report to share the results with you.
OK >> that's it for now....Talk to you another time, and have a great day / week / month etc..
Sending terrific summer wishes your way
Below is the actual size of one of 6 titanium clips placed inside my right breast during breast reconstructive surgery.
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UPDATE: July 21, 2015 (TUESDAY)
It's been 3 weeks since my last chemo session and here's the latest update.
My hair continues to grow back slowly, and I have a full head of very fuzzy light hair...it looks silvery and around the scalp's perimeter, it dark. Kind of strange, though I wish it would speed up in its growth...hehe. I forgot to mention that my scalp feels rather tender and has a stickiness around it. No matter how often I wash my head, or with whatever shampoo thus far, I have not been able to get rid of that sticky feeling. This stickiness feels like one's scalp has sweated all over and it's left on one's head. I'll continue to experiment with different product to see if I can find anything that will help. If anyone out there has experienced the same, and found something that works, please let me know.
The decrease in energy and lethargy the week and a half following the last chemo is receding.. I continue to drink as much as 4 liters of fluid as I can to counter the dehydrating effects of the Herceptin and paclitaxel drugs.
My only loss in taste, lasting about a week and a half post-chemo gradually disappeared too. At that time when my appetite decreased. It didn't bother me knowing coz I was glad to eat less and lose some weight since I had gained about 3 kg or 6.6 pounds over the 9 weeks weekly session.
I continue to take my 3 natural supplements, one to boost my immune system (Brand: Agaricus Blazei) , the other two being anti-oxidants (Red wine and Grape seed OPC-3)... I believe taking these help with my recovery....on days I forgot, I seem to felt weaker so I try not to forget.
I started resuming my once a week zumba cardio lessons but I manage to last for only 30 minutes...I also resume doing my weight training at they gym as I got stronger now... I still drink lots of fluid. Each time I go to the toilet, I see the drugs being discharged. Knowing that there's less toxins in my body made me feel good. I also resume walking by the river whenever the weather is good....
My nails - I cleaned off the dark nail colors two weeks after chemo 10, and decided to leave it colorless to see what happens. It seemed it's less sensitive to light now because my nails did not crack as it did the last time. Now, I can go back to using the usual light nail colors that I like - pink, lilac, white or wine red. The same goes for my toenails.
The brief chemo brain I had experienced a week after chemo 10 is now fading - meaning my mind is less cloudy. I watch as many documentary shows as I can to keep my mind sharp or play mahjong with my siblings, relatives or their friends. That helps tremendously.
The only thing that's a little different is that instead of getting up earlier than I usually did before chemo 8, I continue to get up later, like around half past 9 or 10. Don't really want to force myself to get up early if my body doesn't want to. Perhaps after another week when my body has more time to recover from the chemo drugs, I could settle back to my previous routine. Try to enjoy the longer morning sleep as it won't lasts forever as I need to get back to work, after September. Working on a free lance basis, I'm under no pressure...though I must admit I'm not used to not working at all.
UPDATE: July 23, 2015 (THURSDAY) - TRANSTHORACIC ECHOCARDIOGRAM TESTING (aka TTE)
Went to the National Heart Center to get a Transthoracic Echocardiogram (aka TTE) done because my MO wanted to check if the amount of Herceptin I had for my treatment resulted in cardiotoxicity to my heart. The procedure took about an hour overall. I enjoyed talking to my Sonographer throughout the entire procedure. I do not expect any cardio-toxicity because I had chosen a treatment plan close to the one I wanted, based on my research. Nevertheless, I shall report back and share several TTE images too.
P.S. As of today, July 30th, 2015, I no longer need longer sleep. I can revert back to getting up at around 8000 hours...A very encouraging sign indeed.
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***START*** OF *** RADIATION*** JOURNEY***
UPDATE: July 29, 2015 (Wednesday): PRE-RADs PREPARATIONS & MARKINGS
Today is the day for my appointment at the Radiation Oncology Department of the Cancer Center. I had CT planning scans done in two position (a) prone and (b) supine. During the scans, I had to hold still the entire time while 2 radiation therapists made markings on my back, (for the prone position) and then the front center, and right breast (for the supine position).
Markings are done either using tattoo (which are just a tiny dot and permanent) or Henna dyes. The latter lasts about a week to a week and a half. This means markings need to be re-done for a 2nd time. I've chosen Henna, but may go with tattoos for my back later.
Since radiation therapy is only 3 weeks (15 sessions in all, total dosage 40 grays or 40/15 = 2.67 gray or 267 centigray per session). Since I am quite comfortable with the prone position, I've decided to go with this position. As I will be lying on my stomach with my right breast hanging down from a hole on a massage-like table, the angle of radiation will come diagonally from both sides. This position results in the least damage to other parts and organs in my bod especially the lungs. The supine position will cause some damage to lungs - so if you can, avoid this position..
Was also informed that on the actual day (starting Aug 12) the entire procedure will take about 30 minutes in all - with 10-15 mins or so to align my body correctly, and another 10-15 minutes for radiation. I'll get some pictures taken and post it below at a later stage. BTW my simulation will be on Aug 11.
POST CHEMO NOTEs:
It's been 4 weeks since my last chemo. No longer have any chemo brain. I have resumed weight exercises at the gym. In addition, I've regained most of my strength, although I still experience minor degree of pantings....Overall, I have gained about 5 pounds which I intend to lose after radiation. RO said that during radiation, I should not stretch the breast area too much as it can be quite sensitive - thus I need to cut back on my weight training exercises.
Appetite is good, and no longer feel dehydrated. Hair is still fuzzy and only about 2/3 of an inch long... My scalp continues to remain sticky. I still sweat easily and that didn't help. I wonder if this slows my hair growth.. Thankfully, mMy nose hair have all grown right back.
Since last week, I've gone back to the gym to work out after regaining my strength that was temporarily lost the two weeks after my last chemo. I noticed, however, that even with one sentinel lymph node was taken out of my right underarm, that arm is slightly weakened (see pix above). When I use weights during training, my right arm cannot carry the weight in the same straight manner as my left. I further noticed that my right should droop about 1/2 inch. So when I do weight training, I try to straighten my right shoulder. .
That's the reason why strongly suggest that unless all your sentinel lymph nodes are cancerous (positive), please DO NOT lightly give permission to have your axillary lymph nodes taken out. Save them if you can, and wherever possible. Please read the link posted above about why all these lymph nodes in our body are so so so precious and important.
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Hi guys... so I had a abdominal/pelvic CT scan on Friday, July 24th. I had blood in my urine with symptoms of urgency, discomfort in my abdomen and urethra area, etc. all during working hours a couple of weeks ago; when I got home the same evening all the symptoms had ceased. I called my doctor and her nurse called me back & set up an appt. to see her the very next day. I had a urinalysis done she wanted to rule out UTI... got the test results back the next day and tested negative for a UTI. My PCP called and said that I had 5 - 10 RBC's so she ordered a CT scan to rule out kidney stones, masses, etc. I had the scan done at 1:15pm last Friday... it took about 20 minutes... scans taken pre-contrast, after IV contrast... and I waited 10 minutes so that the contrast could absorb more into my organs and another set of films were taken.
Got home around 5:00 and my doctor called and left a message saying that she'd thought I would like to know that the scan showed no masses, but did show some renal narrowing of my kidneys and that we would talk later. She didn't mention if my bladder showed anything, etc. I know that this type of CT scan, abdominal/pelvic, would show this area. My question is, were "ALL" of the films looked at and no masses showed up anywhere, or was she just referring to my kidneys? I haven't gotten the official test results back yet and don't know why it is taking so long. Now I am worried that there was something more found after she called. Any thoughts????
I would appreciate any feedback/insight... opinions, you can give me. ~ Dee
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UPDATE : August 3rd, 2015 (MONDAY)
Post Chemo Follow Up Visit with MO (Medical Oncology)
On July 23,2015, my MO sent me for a Transthoracic Echocardiography (TTE) exam to check if the amount of Herceptin given has affected my heart (i.e. any cardio toxicity). Luckily, the result indicated my heart is normal and has not been affected by the Herceptin drug during chemo.
However, I did noticed that I have a tendency to pant on long walks or when I am walking up a flight of staircases, even if it is from one floor to the next. I've informed my MO of this as well as the fact that every once in a while, I feel my chest section just below my breast tightens up such that I feel some difficulty breathing. He stated that on rare occasion, paclitaxel drugs could cause scaring of the lungs, which means that it could affect one's breathing. He suggested a C.T. scan to check if that is the case. That's the first I've heard of lungs scarring, When I looked it up, it seems pretty scary if it is. So I've decided to ask for a C.T. scan as I really want to know the condition of my lungs, plus my insurance covers this. So why not.
Since I shall be going for radiation therapy simulation this coming Tuesday (Aug 11) and actual radiation starts on Aug. 12, I may have to wait until radiation is over. But I'll send my MO an email to find out if the CT scan will interfere with my radiation treatment or vice-versa before proceeding. Will come back and report on this when I get more info and confirmation.
Below is a description and procedure of TTE taken from the U.S. National Library of Medicine if you are interested in knowing what it is and how it is done. This took 45 minutes. Please note that THIS IS different from the ordinary ECG heart test that takes only 10-15 minutes.
How the TTE Test is Performed - TRANSTHORACIC ECHOCARDIOGRAM (aka TTE) - from National Library of Medicine link below.
TTE is the type of echocardiogram that most people will have. An echocardiogram is a test that uses sound waves to create pictures of the heart. The picture is more detailed than a standard x-ray image. An echocardiogram does not expose you to radiation
- A trained sonographer performs the test. A heart doctor (cardiologist) interprets the results.
- An instrument called a transducer is placed on your ribs near the breast bone and directed toward the heart. This device releases high-frequency sound waves. Images will be taken at other locations as well, including underneath and slightly to the left of your nipple and in the upper abdomen.
- The transducer picks up the echoes of sound waves and transmits them as electrical impulses. The echocardiography machine converts these impulses into moving pictures of the heart. Still pictures are also taken.
- Pictures can be two-dimensional or three-dimensional. The type of picture will depend on the part of the heart being evaluated and the type of machine.
- A Doppler echocardiogram records the motion of blood through the heart.
Here's the link if you wish to read more...
http://www.nlm.nih.gov/medlineplus/ency/article/003869.htm
My hair started growing and I love, love, love the soft feeling....the stickiness in the scalp is now gone. BUT in its place, I found that my head sweat excessively, so much so that I must carry a towel with me wherever I go. I sweat at night. It's almost like I've just gotten out of the shower without towel drying my head sort of sweaty feeling. I wonder if this is temporary. Hmmm, let's wait and see.
P.S. Please see below for images of my TTE.
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Dear Nat:Thanks for your thread. It is very informative and helpful.
Good luck with your radiation. (I did not have chemo.) I tolerated the radiation very well with no side effects. Hopefully, you will not have and SE either.
614
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@614....glad you've found it helpful....thanks for your well wishes...Just got back from my radiation simulation....it was an interesting experience. At my request, my radiation therapist took pictures of my simulation so that I can remember this forever, and to share them with new fellow members here...
Sending back good wishes your way too...take care now..
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Update: Aug. 11, 2015 (Tuesday) - RADIOTHERAPY SIMULATION DAY
Went for my radiation simulation at 1015 hours this morning. Was advised to wear loose fitting blouses or shirts and comfy pants throughout my upcoming radiation treatment. Anyway, I didn't have to wait long...My wonderful radiation therapist (RTs) Ms. O took me to a room and explained the process to me, along with chart images from the planning CT Scans done last week. The simulation took about 45 minutes in all. At my request, she took pic of me in the simulation room - I'm sharing them below with you.
The top pix is of me in the prone position before marking adjustments. X-rays are then taken periodically. They are used to match the CT planning scans done last week to ensure that all markings are spot-on (i.e. aligned with each other). The middle pic shows the right breast with adjustments made. The bottom pix shows what my breast looks like after completion of simulation and adjusted markings.
NOTICE that I am in the prone, NOT supine position. This position means no radiation reaching and damaging my right lung. If you could, please ask for this prone position too. If the hospital you go to does offer this position, please consider finding one that does - because in the supine position, daily radiation exposure on your lung(s) will result in its/their scaring and hardening, which will result in you having difficulty breathing down the road. That is something I nor any of us want . Who wants more damage to our body, right? It is our duty to protect our body whenever we can at every leg of our cancer journey.
Tomorrow will be the start of my 1st radiation treatment (RT). I thought I was going in for only 3 weeks, but found out today that I was scheduled for 4 weeks (3 weeks whole breast radiation and 1 week booster). I informed my Radiation Oncologist that I had psyche myself up for 3 weeks, and depending on how it goes, will decide later whether I want the booster or not. So, if those of you out there have had booster, could you please share your experience and whether it was worth it for you ? Thank you in advance
Above left: Me in the simulation room before adj markings. Above right: Me in the simulation room after adjusted markings
Above left: View of me in prone position being marked. Above Right: My Breast After Marking Adjustments
Could you see the naturalness of my reconstructed breast that was beautifully done using the Round Block Technique after breast conserving surgery (BCS aka lumpectomy)? Doesn't it looks just like my normal left breast below? The pic above and below will enable you to make this comparison. My right breast (which is your left if you are looking at it) is the breast I had lumpectomy. Could you also see the 4 inch scar above (was 5 inch) from the sentinel lymph node surgery from this angle?
I regretted not asking my SO to refrain from taking any nodes if I had clear margins (which I did).. My oversight caused the loss of one precious sentinel lymph node - even this loss of just 1 node resulted in my right arms being somewhat stiffer and not as strong as before. That's why I'm a strong advocate of not losing any nodes if you can ever help it. If you have a choice to save it, protect it, please please do so and not give it up lightly. You'll only know if you read a lot about it, and educate yourself and give it careful thoughts, and not leave this decision to others...I guess I didn't read enough about the significance of clear margins at that time. I hope you will learn from my expensive oversight. Please be aware it is standard procedure to take out margins and sentinel nodes. You just have to find out what the policy is for the hospital you go to - and then decide what sort of clear margins is clear to make this decision. 0.8mm-10mm can be considered clear, from my readings, that is. Some people would say 0.5mm but I'll chose the higher standard.
My entire right breast areola was cut out during surgery by my SO (pix below, see the scaring around it which is healing nicely) so she could take out the tumor in the upper right quadrant from that angle. Thereafter, my Onco-plastic surgeon immediately did reconstructive surgery using fat from within the breast by re-arranging it. The areola was then stitched back using dissolvable sutures, and glued over with medical glue to protect the sutures. The latter eventually fell off by itself. My right breast is supposed to be smaller than my left breast (your left if you are looking at this pix). From this pix taken today, it seems as though my right reconstructed breast is slightly bigger than my normal left breast isn't it. That's due to the swelling within. When the scar around the areola heals completely, it will look as natural as my left areola-- so I was told by my SO. However I was also told by my RO that during radiation, that the right breast will also swell and so will be bigger than my left breast. When the swelling subside, it will eventually become a size smaller again. That if I'm lucky, it may just return to a size similar to my left breast. Interesting, isn't it? I discovered "lucky" to mean the hardening from within...I thought about it....and need to find out why.
The line in the center of my chest is tentatively marked during simulation for a supine position. In the end, I opted for the safer prone position above so my lungs won't be scarred from radiation. Patients who have mastectomy who have to undergo radiotherapy most likely have to do it in the supine position (lying on your back). Consequently, the chances of getting lung scarring is higher. One suggestion is to find out about the total dosage (gray) given for the entire treatment, and asked to have radiation over a longer period at a lower dosage. Please go to the National Library of Medicine PubMed section and search for clinical articles with respect to this that will give you more info to help you come to a decision for your own case.P.S. In case you are wondering, I was wearing my black head scarf during simulation. On actual RAD, I was told I will have to take it off.
PPS. My MO said I should consult with my RO to see if CT Scan for lungs can be scheduled with him. I spoke with the radiology department manager about it. She said that I will be getting a full CT Scan of my lungs upon the completion of radiotherapy anyway. If, however, I would like one sooner, I can speak with my RO (her boss) next Wednesday when I get to see him. Apparently, after every week of radiation, i'm scheduled to have a follow up visit with him to check on how my breast is taking these radiation beams. Will report back..
POST CHEMO UPDATE:
The excessive sweating I've been experiencing throughout the day has not abated. In fact, it's so bad that I have to wipe it a few times a day. The only time is when I sit under the fan to cool off. I only take cold showers. But at night, when I sleep, my head does sweat so much when it's hot that I have to fold a towel as a pillow and lay my head on it to prevent the bedsheet and mattress from getting wet. Let's see how long this continues. Will report back.
PPPS. Thanks for visiting... Sending good wishes to all my fellow members currently undergoing radiation therapy as well :-))
PPPPS - 09/11/2015 - I just wanted to come back and add that after speaking with several of the radiation therapists, they've informed me that this machine they are using, well, they can program it in such a way that they can block radiation from getting into sections of the lungs or inner chest walls for patients in the supine position. Wow, that's really great news. I'll ask some more when I visit the center again...Please standby.
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UPDATE: RAD #1 of 15 Sessions , August 12, 2015 --> EXTERNAL BEAM RADIATION THERAPY
FINALLY, the start of another day of reckoning of the 3rd Leg of my BC journey. I have posted pictures below of today's treatment for interested members.
1) Unlike chemo, there is no blood test needed.
2) There was no need to buy any camies as the markings are well and cleanly done as you can see in the pic posted during simulation.
3) 100% aloe Vera is great to use after each radiation. If you can find freshly cut aloe vera leaves, thats even better. Thereafter, emu and other non fragrant moisturising cream or oil work just as great.
Treatment schedule, which was generated yesterday Aug 11, was given to me (see pix below). Reported @1025 hours this morning at the Radiation Oncology Department (ROD) where my RADs case officer met up with me to explain the entire registration, check-in, gown changing etc. procedure. I was introduced to the entire team of 5 Radiation Therapists who will be working with/on me over the next 3-4 weeks. Didn't had to wait long, and was quickly taken to "The Room."
I was again lying in the prone position. Since my back has all the tattoo markings needed for alignment, and since adjustment markings from yesterday's simulation were done, the entire process to get me ready for RAD #1 took only about 10 minutes. After I was properly aligned, several X-ray pictures were taken of my position to affirm exact alignment before my 1 minute radiation kicked in. This team of RTs seem to be more experienced than the simulation team who had worked on me yesterday at the other location next to my cancer canter. Wow, I thought, "That didn't take long!?" I must
admit that I could feel the warm seeping into my breast when radiation hit.
Then it was over. And I went back to change out of my gown - and was pleasantly surprised that I was out as quickly as I came. During changing, I applied a liberal amount of 100% aloe vera gel to my entire breast. Throughout the entire afternoon, I continue to apply either emu oil or aloe vera. It did get warm and itchy in the area between my breast and where the sentinel lymph node scar was later that evening. Applying these cream kept the itchiness down. I did feel a little fatigue late afternoon, and slept for about an hour and a half or so. Hope any SE will be fewer and imperceptible - will see ...
I've also added pix of the planned images taken yesterday of how the radiation beams was and will be directed at my breast. It's interesting to know the details of such things - to me at least, as I want to know everything that's being done to any part of my body in any kind of treatment or treatment plan. Although in one of the pix, I was somewhat concerned about the yellow line where it was too close to the edge of my right lung. I asked my case officer if the photon beams could be adjusted downwards a little as I don't want it touching the surface of my lung. She believes it wouldn't but that she would mention it to my RO...I truly hope it was adjusted today as I don't really want any scaring on the lung...
This Oncology Department has teams of the following to service all patients:
(a) Radiation Oncologist - Dr. who takes overall charge of your treatment.
(b) Radiation Therapists - the team who do the planning and administer patient treatment through radiation machines.
(c) Nursing staff - are there to attend to patients' need eg wound dressing, giving medication, injection etc. where needed. They also help to coordinate patient treatment.
(d) Physicist - ensures that radiation machines work properly and accurately.
(e) Dosimetrist - works closely with RO to calculate and plan patient treatment.
============================================================
(1) Below is a pix of my radiotherapy schedule with dates/times.
(2) Pix 2 & 3 below are images of my planned CT Scan showing the Angle of Entry/Exit of the radiation beam for Phase I and Phase II of radiation treatment . The different colored lines in the left pix indicate the gradual radiation of the whole breast over the entire treatment, The red patch in the lower right pic shows the location where the booster will be given (ex tumor location) in the final week (Phase II) of treatment, should I choose to do it.
(3) Below are are actual pictures of RAD #1 taken of me today inside the RAD's Room this morning. The machine can move 360 degrees to take X-ray pictures as well as directing the RAD beam to the area of treatment. That's because the table height can also be adjusted. When the machine is stationery, it is as shown in the picture to the left below, The machine will first moves counter clockwise to just below where my right breast is dropping down from the table. The first delivery of 2.67 grays of radiation beams (via 6 megavolts to a depth of 1.5 cm!) will shoot from the left side of my right breast, exiting through the right (as in the planned images) in a diagonal direction.
Then, the machine moves clockwise down to more than 100 degree or so below where my right breast is (pix below) before delivering another burst of more radiation (aka high energy photons), this time entering from the right and exiting to the left..
Hope these pictures help to give you some idea of radiotherapy. Do take care, and all the best to anyone out there travelling this part of your journey as well.
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UPDATE: Aug. 13, 2015. Below are RADIATION #2 of 15 sessions pictures.
DIDN'T TAKE RADS #3 PIX TODAY (Friday, Aug 14), But procedures are the same. Will post only when there's something new and interesting eg. side effects from RT.
(1) Pictures of the Changing Room
(2) Pictures of Radiation #2 in Action
(3) Pictures of the Bottom & Top of The Radiation Machine. The glass in the pix to the right is where the rads beam discharges from.
Post RADs Remarks:
I feel better & good today...again, my right breast felt warm immediately after radiation - so slathered on tons of aloe vera and every 3-4 hours thereafter...I've decided not to wear a bra after radiation to allow my breast to breathe and because of the aloe vera gel.. The bra constricts my right breast. It was uncomfortable after radiation.... Later towards the evening, the right side of my right breast (in the NNE position) felt somewhat hot as if one gets those heaty sunburn sensation after several hours at the beach sans sunblock. So, I sprayed on pure emu oil. That seemed to cool it down.
BTW, my hair is growing nicely, about 5/8 inch long now with some strands growing as long as 2-3 inches and curly dotting all over different parts of my scalp. . I take pictures of them every week. I decided when they are long enough, I shallput them together into a slide presentation and share them later. I was showering before bed and discovered that all my nose hair have grown back. Boy, was I glad that the air I breathe is being re-filtered again...hehe ...But the head sweating has not stopped -:((
Anyway, going to bed now.
Thanks for visiting my thread....take care now...
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Update: Aug 16th (Sunday).
This morning, my relatives and I walked to the National Stadium to join the more than 150 people in the weekly free intensive cardio and zumba work out. I found that I can resume some jumping, hoping, swinging, buttock twirling and so forth. It was a fun work-out. Even though my RO had asked me not to do strenuous weight training at the gym, I'm going to go this afternoon anyway to see if I can still lift some weights with my right hand. Of course, I have to be careful not to "strain" my right breast.
Throughout this entire journey, I discover that having cancer does not mean we cannot do the things we want...As long as we remain optimistic and determine, and continue to read ahead, understand and ask questions of each type of treatment we will be getting or consider getting, our own pro-activity can make our journey less frightening and more pleasing...and yes, I will admit that once in a while, I do experience the blues out of nowhere, but they are really very short-lived.
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UPDATE: AUG. 21st, 2015 >>> Radiotherapy #8 of 15 + TTE IMAGES
This early morning, I went in for my 8th radiation session. Although many people said that getting into position takes time, at this radiation department, it was a pretty much quick in-and-out, taking only about 10 minutes - bearing in mind that radiation time took only a minute or so (thanks to pre-markings and simulation adjustments done before the start of radiotherapy).
After I was done, I asked for permission to re-take pictures of my right breast CT Planning images coz I want to use it for a project I am working on. As always, after changing out of the gown, I generously applied the 100% Aloe Vera gel onto the radiated breast. It has worked so far. No redness, some very, very mild painless swelling, and no more itchiness that I had during RADs #1 and #2. Application of the gel soothe the itchiness. Since then it has not returned There was a little dryness initially, but that too has disappeared. Aside from the gel, I also use non fragrant moisturizing cream and oil. These seem to work so far too.
Afterwards, I walked over to the National Heart Center next door to my Cancer Center to see if I can get images of the Transthoracic Echocardiogram (aka TTE) that I had done back in July 23, 2015. ...and I was able to do do...
Thus, I'm sharing it here with anyone interested to know what TTE images are like. The images below is only a partial segment coz it's quite detail. I'm gonna go over it the next few days in conjunction with the copy of the results my MO had given me to back in Aug 3, 2015 to further educate myself during my free time.
Below are images of my Transthoracic Echocardiogram done back in July 23, 2015. There are 112 images in all. I am only posting 2 image segments to give interested members some idea of what your sonographer will take of your heart and its valves. When I click on those images that have a play button, I can see my heart beating...it was truly amazing!! The sonographer applied a gel-like substance similar to the ultrasound gel use by an OB/GYN when one has ultrasound to look at our fetus. But of course mine is being applied over the region of my heart.
MORE POST CHEMO Update:
It's been more than 6 weeks since my last chemo. I am very happy to report that the stickiness on my scalp is finally gone, gone, gone...I am happy to also report that my hair is growing, and they have completely covered my scalp. Even though they are short (about 1/2 inch), they are soooo furry soft. I was surprised to see many fine stray stands of 2 inches length hair all around my head too. I'm not complaining. It reminded me of the time after my daughter was born when she had no eye lashes for 4 months or so, and then one day, her long lashes suddenly sprouted out..... I absolutely love touching my new hair every day @!!@ I've started on a salad and fruit diet to try and lose the 6 pounds I've put on during chemo :-(( sigh....I hope it will be successful....keeping my fingers crossed.
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Looking back thus far, I have enjoyed learning more about myself and my journey. When I was first diagnosed, I told myself that I will make the best of it, learn from it along the way, and do whatever it takes TO PROTECT MY BODY. I have every intention of continuing along the same mentality as I want it to be a very meaningful one, so that when I eventually get to look back at it sometime down the road, I want to feel pride instead of bitterness, of the joy of making it through instead of fear of not making it through, and awe of life instead of regrets...yes, that's how I want to feel....
Thanks for visiting. Please take care, and sending you the best throughout....
P.S. Will post when I am able to get pictures of my bone scans from the radiologist's office, and MUGA scans from the
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UPDATE: Aug. 26, 2015 (Wednesday)
Today is exactly 2 weeks since I've started radiotherapy. Nothing new to report, except that I had a 2nd follow up consult with my Radiation Oncologist to discuss the x-ray pictures taken before radiation this morning (Results: My RADs are still aligning properly, yea!) , and also on whether I have made a decision about doing the additional week of booster or not. I said I will give him an answer by the following Tuesday after RADs that day. That's because I want to continue reading more published scientific articles on the additional benefits or non benefits of additional booster rads to the tumor bed for early stage HER2+ breast cancer patients like me who have had chemo. So far, the majority of articles I've read discussed the advantages of booster to late stage and/or metastatic cancers BC , or to early stage BC patients like me but who did not go for chemotherapy.
As I continue my search on articles on the pros & cons of The Booster, I came across this article PRINCIPLES OF RADIATION THERAPY below , and would like to share them with interested fellow members. Though at this point in time, my inclination is not doing the booster, especially since I have already done chemo. I actually like it the chemo was given to me first before radiation when the standard procedure for lumpectomy is radiation immediately, followed by chemo, if needed.
Anyway, am copying and pasting certain sections/paragraph that seems interesting. If you think so too, and is interested to read it in its entirety, the source link is posted at the bottom.
***HOW RADIATION WORKS***IONIZING RADIATION Ionizing radiation is energy sufficiently strong to remove an orbital electron from an atom. This radiation can have an electromagnetic form, such as a high-energy photon, or a particulate form, such as an electron, proton, neutron, or alpha particle.
High-energy photons By far, the most common form of radiation used in practice today is the high-energy photon. Photons that are released from the nucleus of a radioactive atom are known as gamma rays. When photons are created electronically, such as in a clinical linear accelerator, they are known as x-rays. Thus, the only difference between the two terms is the origin of the photon.
MEASURING RADIATION ABSORPTION
The dose of radiation absorbed correlates directly with the energy of the beam. An accurate measurement of absorbed dose is critical in radiation treatment. The deposition of energy in tissues results in damage to DNA and diminishes or eradicates the cell's ability to replicate indefinitely.
Gray The basic unit of radiation absorbed dose is the amount of energy (joules) absorbed per unit mass (kg). This unit, known as the gray (Gy), has replaced the unit of rad used in the past (100 rads = 1 Gy; 1 rad = 1 cGy).
Exposure In order to measure dose in a patient, one must first measure the ionization produced in air by a beam of radiation. This quantity is known as exposure. One can then correct for the presence of soft tissue in the air and calculate the absorbed dose in Gy.
Percentage depth dose The dose absorbed by tissues due to these interactions can be measured and plotted to form a percentage depth dose curve. As energy increases, the penetrative ability of the beam increases and the skin dose decreases.
If you copy and paste the below into your browser, it will open up as a 10 page pdf file that you can save to read later. I've read it all - quite enlightening, and the process is similar to most of what's been done to methus far. www.thymic.org/uploads/reference_sub/02radtherapy....
Sending more good wishes to all my fellow members going through radiation as well... Below are Beds of Flowers for your enjoyment. They give me hope and happiness whenever I look at them. I wish for them to bring you similar joy and happiness too as you are reading along...
P.S. I'm so glad my treatment journey is coming to an end in about a week's time. Take care now everyone. God Bless....
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Thank you so much for allaying many ladies fears by such good descriptions and pictures.
All though nothing is exactly the same from center to center, your posts give everyone a picture in their mind a fairly good picture what to expect..
I wish I had started a spread sheet. I do have all of my records and CDs of all my cts and mris
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More Post Chemo Update: Aug 30th, 2015
The excessive sweating of my scalp has continue unabated. Kinda worry if it's only temporary or will it become something permanent. Wrote an email to my MO to ask about it. Will see what he has to say....But did do some reading of post-chemo sweating. It seems there are others who've experienced similar symptoms and have mentioned it at various other forum pages....Need to look into it more and see what I can find....I must say that the sweat are not the kind of stinky smelly sweat like the underarms after a work-out, but rather it's more of a watery kind, as if water are seeping out of one's head, and therefore, not smelly. Still, I should take note and see if it's anything serious or not...@??@.
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RADS UPDATE: September 1st, 2015 (Tuesday) - LAST DAY OF RADIATION! Yippee
Just got back from my15th, and last, session of radiation therapy today - actually I have chosen not to have the boost dose (which would have been another 5 days or a week of radiation).
My RADs case manager was waiting to have an interview me (a sort of exit or completion interview, if you will) about my experience there, and asked if I could share with her my reasons for declining the boost dose.. I did. We had a very good conversation and discussion about other things as well, eg. those relating to the cancer center's support programs for patients. I told my SO and my RADs case manager my interests in volunteering with new cancer patient education. I was told that someone from their social work (?) department will be in touch with me. Let's see how this part will go...
Then I had 3rd week post-RADs visit with my Radiation Oncologist. He took a look at my breast and thought they look fine even though there was a slight blush color...He told me to continue applying whatever it is I've been applying. Gave me an appointment for a follow up visit in early November, then sent me on my way... so I thought "Wow, that's it then!"
SO below are some words I want to leave us all with....and to think about....
FINAL COMMENTS....
From the very beginning, this journey has been eye opening and fantastically educational because I chose to make it so. I am pleasantly surprised & happy to find that the Cancer Center I had chosen to go to moves everything along pretty quickly and efficiently 90% of the time. The radiation part of it was the easiest and the chemo part, to most extent, was not as bad as I had imagined.... I think that's due to 2 major reasons (1) I prepared by reading up on the side effects of herceptin and paclitaxel, and go further by reading the actual side effects others' experiences. Then I think about what I can do to lessen that effect on me. I read about TCM and organic vitamins that can strengthen my body and boost my immune system. (2) I elected not to go with the standard treatment plan. I had countered with the clinically proven alternate TP I wanted for early stage BC and HER2+ cancer patients. I'm glad my MO was willing to work with me on my request with no fuss and no threat. Of course he did have his say. The senior nurses in the chemo room did try to make my chemo experience comfortable, and fearless. However, the less experience nurses were somewhat overwhelmed by the large number of patients they have to look after. Consequently, they were less attentive and the ambience can, on those occasion, become somewhat robotic... I appreciated the friendliness and professionalism of the team of radiotherapists in Room 8 at my Cancer Center. They were wonderful and patient, great to interact with, and took the time to explain in detail questions I have. Most of all, I love the prompt responsiveness of all my doctors in getting back to me on all my questions before every procedure, every treatment as well as any post treatments questions I have. In this respect, I am quite blessed...
Well, I would like to thank you again for visiting my thread, & wish you, my dear fellow members, the VERY BEST, wherever you may be, if you are still travelling along whichever part of your Journey....Make it the way you want, on your terms so you'll feel good about it when it's completed...
P.S. I am certainly aware that completing these treatments bring no guarantees... That there is the 5 year, 10 year, 15 year, 20 year or more survival milestones... I'm not gonna waste my time dwelling on them now because I'm more in a hurry to continue onto the many things I still want to do, and to catch up from where my life was put on pause 7 months ago.:-))... and I am feeling quite H_A_P_P_Y right now. I will savor this feeling of Happiness while it lasts... QUE SERA SERA, whatever will be, will be..::--))))...now back into the job market and see where that will lead...ANOTHER JOURNEY to remind myself to stay upbeat too....SEE, LIFE IS ONE THING AFTER ANOTHER....
PPS. Want to know why I chose to post this last pix of "I Did It to Save My Life"??????????????????????????????????????????????????
BECAUSE THAT'S HAPPENING ALL OVER THE WORLD -----.EVERYONE IS DOING WHATEVER THEY NEED TO DO TO SAVE THEIR LIVES, NOT JUSFOR CANCER PATIENTS...... if you ever do get a chance to read this book, you'll find that their survival rate are quite beyond their control too. Oftentimes they don't have a choice...
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Post RADs Update:
Although it's been only 4 days since my final RADs treatment, I've noticed that the entire right breast is red, like slightly sunburnish. Good thing it does not hurt, just warm to the touch. Been applying my cream and moisturizer to it, and they feel OK. Still, will need to keep an eye out for it. It's my body after all.
Post Chemo Update:
My hair is growing quite nicely and thicker now. I just love touching them as they're so fluffy. It's strange to see and feel those "rogue" hair throughout my head. I call them "rogue" because they are like 3 inches long. I don't mind them at all, though it would be nicer if ALL the hair are rogue. Then it would be amazing to have 3 inches all of a sudden, wouldn't it. I
Still getting the head sweats that I had previously mentioned, though not as often as before...Hope it's a sign of improvement in this area. Will have to pay attention. I've also discovered that the continual doing of the arm lifting or swinging exercises are so good for my right armpit. Not doing it a day or two tends to result in a stiffen right arm...
OK, that's all for today...Gotta rest now as I have a looooong day tomorrow.。。。
Take care, thanks for visiting and sending good energetic blessings your way...
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More Update:
Ordered a short wig from Jon Renau last night coz a fabulous young breast cancer patient name Erin Leigh talked about it on her youtube videos. They look really natural and beautiful on her, and I found a beautiful one on Voguewig. So it will arrive within a week or two. They are expensive ($99.84 after $20 labor day discount, with free international shipping though). The customer service person who chatted with me online was knowledgeable, and friendly. She said I could exchange within 10 days, or return less a 15% re-stocking fee which I think is reasonable. Though I hope neither will happen. BTW, Erin has other videos on youtube that you can check out that increases cancer patient's esteem. Bless her young soul :-).
So, I decided to get one because I've started applying for jobs. These jobs deal with the public or standing in front of an audience. So, I need to be more professional looking. I'm not saying I'm ashamed of my baldness. I'm not. While I like my Sinead O Connor look, I'm still competing with 100s of other people applying for similar jobs. Of course, if someone gives me an offer that's attractive, I won't turn it down either :-)) So, we do what we need to do to beat the competition to get that job, right? Not working for 7 months (actually 9 months for me) is hard and unusual for me coz being busy working have always given me happiness.... Besides, no job = no income. My entire treatment (ie. Consults + tests + surgeries + chemo + radio ) came up to about 35K after subsidies (yep, which is that large 52.5K cost). Total treatment cost about 87.5K. Luckily, because of the insurance and rider I bought, my out of pocket is bearable. And my annual insurance premium cost about $1300. It will increase in about 5 years, naturally. I am forever indebted to my younger sister for her constant nagging to get this medical insurance more than a decade ago. Can any other country beat this? No insurance will ever accept me now with this pre-existing medical condition......so I had better make very sure there is no lapse in my premium payment...
Neuropathy update: 2-3 weeks after chemo, I did feel the occasional numbness and/or bloating on both my fingertips. These usually occur in the mornings, but would be gone by late mornings. I'd just wiggle my fingers to encourage the flow of blood. My feet are OK. The numbness on my finger tips get fewer and fewer as the week passes by. I'm happy to report that today, 10 weeks after chemo, there aren't any more numbness or bloating sensation on my fingertips... Also, when I urine, there aren't any more bubbles in the urine. I like to think I've gotten most of the drugs out of my system, and that they did their job killing the enemy cells as they run throughout my entire body.
Post radiation-wise, my right breast continues to have some mild redness.. Try to diligently apply the various cream I've bought. Was told it could lasts for a little bit (??) before it will go away....So, I'm keeping an eye on it. But otherwise, I'm eager to be working again....
Thanks for visiting my thread. Sending you this bouquet of tulips and good wishes along your journey...May you continue to be strong and blessed every moment of the day, wherever you are
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