Calling all TNs
Comments
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browerl: Congratulations on being done with chemo! That's great! Woo hoo!
Re. hair, I cut mine really short before chemo and then had my husband shave it off as soon as it started falling out (about 18 days after first FEC). It just becomes a nuisance having it block the shower drain, lying all over the pillow in the morning etc. The hair thing has actually never really bothered me because I have a really great wig which isn't uncomfortable and is quite similar but much nicer than my real hair. And it makes getting ready in the morning so much easier. None of this faffing around with blowdryers and straighteners!
As Gill said, I think for many of us it's about taking control. And at no point should you look in the mirror and see a cancer victim. Look in the mirror and see a brave and courageous woman giving it her all to fend off a bloody horrible disease!
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English Rose - very well said. I like that about looking in the mirror and seeing a brave, courageous woman giving her all to fend off the cancer!!!
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EnglishRose: I agree with adagio - nicely put.
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txjunebug: Three years ago, I started chemo on Dec. 8; had treatment #2 on Dec. 22, so I can perfectly understand how you are feeling about chemo during the holidays. To be honest, I rather liked having the whole family gathered round as I went through those early treatments; and lucky for me the SEs were very tolerable. Still, I did not try and do all the things I would normally do -- I gave myself a rest that year! My 2 sons (aged 17 and 20 at the time), chopped my hair and buzzed my head on Xmas Eve. DH shaved his head too. I still have photos of those moments which, believe it or not, I treasure. You will surprise yourself with what you can handle --and even celebrate -- through this journey. As for the trial, it's good to know they are doing that. TC is a common treatment for those at stage 1 with smaller tumours and no lymph node involvement. Several women here have done it. AC-T is a more aggressive treatment... and the A is not recommended for anyone with a weak heart. That's why they do MUGA scans of the heart before and after. The long-term SEs of chemo can sound horrendous, but remember they are listing all possible complications, not necessarily what you will experience! I understand why your onc would consider you a good candidate being stage 1. I recommend a frank conversation with him/her about the trial objectives, what to expect, drug SEs, etc. One great thing about being in trials is they will follow you closely... and for a long time afterwards.
Sugar: Your daughter looks like such a sweetie!
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Hello to all - 'just got home from port-installation. Doing well, but in pain, so I will write this brief note and join you tomorrow. I just have to pass this along. I have worked since I was 14, with only two years off, so I decided to apply for Soc. Sec. Disability. A determination was made in SEVEN days! I was definitely approved and will receive some back pay!!! If you go to the Social Security Admin. Website and select disability, you will find a list of disabilities that are on the "Speed-Processing List" due to legislation in Congress. Mets of any kind will do it. I just found the message on my voicemail that I was approved. I waited to apply as I thought it would be a bureaucratic mess - It definitely was not. I was treated with kindness and compassion - I was so relieved.
Love you guys,
Talk with you tomorrow.
Sherry
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Thank you Luah! I had several long conversations with the senior research nurse for my MO. MO is out of town. I feel like I made a good decision to join the trial. I'll either get TC or AC-T followed by radiation.
5thSib - I completely understand the concerns with the hair. Still don't know if I'm brave enough to shave my head. Guess time will tell. When do you start chemo?
Today was a high stress day. The reality of chemo started sinking in. Have port installation on Wednesday then Friday is an all day at the cancer center/MO office - Chemo class, MUGGA scan, lab work, and wig shopping. First chemo treatment is on the 16th.
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Txjunebug - a lot of the anxiety for me was the unknown. I didn't know how I would handle treatment, how I would feel etc. Luckily I handled it fairly well! Best of luck to you on your first treatment!
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Hi all,
Celebration!!!! 1 year past radiation!!! Yippee...and Walked in a Race for the Cure on Sat! it was awesome, powerful and being around others who truely understand...made me feel not so alone..
Its been a while since ive written on here, but I have a couple questions? I go for a 6th month checkup and I am to have my first chest MRI...what does this look like, will i have contrast with it? Also I'm have constant pain in my left hip..especially at night when i lay down..this has been going on for a few months. I contacted my Dr. and he is going to do an x-ray...does this sound sufficent to you? will this show if there is anything there? I feel like i always have aches and pains constantly so i don't know if im over reacting..I'm fearful if i don't react then it could be something that I have let go...I feel like I'm strange because I've been have anxiety not having any scans...I think with us TN gals we should have the option, I want one each time i have a check-up...i know, extreme and i know not possible, but for my peace of mind it would help...sorry to go on, but feeling the stress of not knowing...does everyone get this anxiety right before check-up and after a months and months of not having a check-up...
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We have discussed the scan thing before...and I definetly think if we want one we should get one but I have some cautionary advice here...and just my humble opinion only.....but why have a scan if you are feeling good? I can understand having a scan if there is any issue at all..but well for me..I feel great...having a scan would put me into such great anxiety I don't think I could take it...
ah well..I'm supposed to have a tooth pulled and have put it off...just not in the mood for any type of medical procedures at this point...so call me chicken
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Reality - that's awesome about your disability payments - you deserve it for sure.
I am having my first chemo on November 20th, and I am dreading it - however, reading all the great stories on here are a big inspiration and encouragement. I am going to try the ice on my fingers and toes to help with the neuropathy from the taxol. My oncologist didn't mention a port for me, and when I asked about it, she said if I wanted one I could have it - not quite sure what to do in that regard. I only have 8 treatments to get through and I guess my veins are OK, although she didn't check them at all.
Do you know what medications you are going to have thru your port?
I did appreciate your honesty in the e-mail you sent me especially about the radiation - I still have all that ahead of me.
Keep posting here, because you have a wealth of information that many women can learn from - every piece of information helps us all make better informed decisions regarding our treatment.
Hope your port site feels better soon.
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Cancer-related fatigue (CRF)is an unusual and persistent lack of energy or sense of tiredness and exhaustion related to cancer or its treatment. It is different from fatigue of everyday life, which is often temporary and relieved by rest. CRF typically comes on unexpectedly, is not related to an excessive amount of activity, and usually does not improve with rest or sleep.
Coping with a serious illness like cancer requires a tremendous amount of energy and effort. CRF can impact your physical, psychological and emotional well-being. You may feel like you don’t have enough energy to keep up with your usual daily routine, including work and social activities, and even your cancer treatment plan. In addition, fatigue can affect your mood, emotions and concentration, how you feel about yourself, and your relationships with others.
Despite its prevalence, cancer-related fatigue is often over-looked, under-recognized and under-treated. Talking about cancer-related fatigue and understanding its causes can help you and your healthcare team identify ways to successfully cope with and manage it. In addition to the help your doctor provides, there are things you can do to take charge of your life and help alleviate your fatigue.
NOTE: YOU SHOULD ALWAYS REPORT ANY FATIGUE YOU MAY BE EXPERIENCING TO YOUR PHYSICIAN.
As each person experiences cancer differently, the same goes for CRF, which can vary in its unpleasantness, severity and the amount of time it is present. For some, the fatigue is mild and brief. Others experience chronic fatigue that lasts for months, or even years, after active treatment is complete.
If you are suffering from cancer-related fatigue, even simple activities, such as talking on the telephone, shopping for groceries, or walking across a room can seem like too much. Cancer-related fatigue can make you feel:
- Overly tired, shaky, exhausted, and weary
- Worn out, wiped out, listless, drained, weak all over
- Unable to concentrate, think clearly, or remember things
- Heavy in your body, especially your arms and legs
- Short of breath after light activity
- A need to stop in the middle of activities to rest
- Muscle weakness, leg pain (including difficulty climbing stairs or walking short distances)
- Depressed, emotional, impatient, irritable, bored, and/or anxious
- Disinterested in normal day-to-day activities
- Not like your “old self”
CRF can be challenging to treat. It requires understanding the underlying cause(s) of the condition and learning ways to manage it. Unfortunately, it is not always possible to determine the exact cause of CRF. Most likely, it is a combination of factors which vary from person to person.
The following are some biological, psychological and behavioural factors that may contribute to fatigue:
- Chronic pain
- Psychological factors (e.g., depression, anxiety, emotional distress, frustration, fear)
- Anaemia
- Sleep problems (e.g., insomnia)
- Hypothyroidism (i.e., inactive thyroid gland)
- Medications
- Hormonal changes/changes in metabolism
- Infection
- Pulmonary or renal dysfunction
- Oxygen level in the body
- Nutritional deficiencies (e.g., weight loss, dehydration, loss of appetite)
- Inactivity, lack of exercise, muscle wasting, loss of muscle coordination
- Co-morbidities (i.e., having other medical conditions in addition to cancer)
- Mental ability factors (i.e., difficulty understanding and thinking)
- Cancer treatments and their side effects*
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adagio--do you have the option of a PICC line instead of a port? I've had one of these and it's been really great.
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adagio - i had a port put in and was happy with it. I had 6 rounds of T/C. I am scheduled to get port out in December, and looking forward to it!
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I was very happy not having any scans after lumpectomy - I just wanted to move on and stay out of doctor's offices. Now I wish rountine scans had been done so I could have started chemo earlier for my "very aggressive cancer", as the med profs call it. As I have mentioned on this or other threads, thank goodness I developed a frozen shoulder. I did not complain about it for a couple of months - when I finally did, a bone scan was done that showed 6 lesions in lungs and mets to 3rd rib.
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...I know it sounds odd that my mets to lungs would be found on bone scan, but they were, thank goodness. A follow-up contrast CT scan was done for confirmation and then the CT guided bx. to confirm bc mets. Just had my port put in, again. I had it put in at my local hosp. this time instead of driving 2 hrs. to VT. My surgeon was wonderful - he even gave good bear hugs! I am a "huggy" person, so I appreciated how personable he was. Very sore and tired today, but have nothing planned, so I am going to curl-up with kitties, my granddog, hot choc. and a movie I do not have to think about!
As always, you are all in my thoughts.
Sherry
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Sherry, glad you followed up on that frozen shoulder! Hope the soreness eases and enjoy your cuddles!
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adagio - I'll say an extra prayer for you on the 20th. Hoping to be feeling okay for that day as the 20th is my DD birthday!!! Get my first treatment on the 16th.
Kim - thanks for the encouragement. I think you're right it's just wondering how I will react to treatments. I'm going to try and work thru all of this and that I know is weighing on the brain. Hoping to push the work from home option if this zaps the energy too much. I have an hour long commute.
Moe0279 -- Congrats!!! Participating in the Komen walk sounds wonderful! Hope you get a good report from the doctor!
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Best wishes to all as treatment begins. I know it sounds ironic, but I feel safer when I am doing chemo - I feel like I am taking some control of the situation. I do, of course, feel like I am in a battle with the cancer cells as mine are so darn resistant to treatment, but I am going to bombard them with every chemo combination I can endure. I felt like giving up on treatment a couple of times last week, but when my three wonderful grandchildren greeted me in the waiting room after port installation and when my 36 yr. old son held me tight and cried last night, how can I possibly give up? I can't. Not yet....
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Thanks for words of comfort and support. PET scan is scheduled for Tuesday am. I will be busy on Wednesday taking my mom to Chicago to see the "I Love Lucy" musical. I guess when I was a little girl about to enter school I told her I should just stay home to watch the I Love Lucy TV show with her! So this little outing means alot to her (and me too). I have been trying to make more regular visits with my folks. They are in fairly good health and very independent but still need to see me and visit now and then.
Seems to me there are so many new names on this thread. Please forgive if I can't seem to keep up. As always special prayers for those just starting this ride and for those dealing with reoccurances.
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Dear Navy Mom - thanks so much for your words of support. I am also having a hard time keeping up with this thread and three others I really connect with, so I often send blanket greetings and good wishes to all so I don't leave anyone out.
Please give your son my best and thank him for all he is doing for all.
Sherry
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Adagio Perhaps you could talk with the infusion nurses at your cancer center about a port. They should give you advice based on their observations. Good luck.
Bernie - Very interesting information on CRF. Thanks
Thinking of all our stage 4 sisters. Holding you close.
Jan
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Adagio Perhaps you could talk with the infusion nurses at your cancer center about a port. They should give you advice based on their observations. Good luck.
Bernie - Very interesting information on CRF. Thanks
Thinking of all our stage 4 sisters. Holding you close.
Jan
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Hi all,
Its been months since I've posted, but I visit periodically to check on familiar names and 'faces'. Will always miss MJB and Laura but happy to see Inmate fighting the fight!
I've had a bunch of scans over the last 2 years in fear of a recurrence but it was just the normal aches and pains of being 59, post chemo. What can I say...I needed the reassurance despite the $$$$.
After 2 yrs of uncomfortable implants, I"m having the new teardrops put in the 30th. Can not wait !! But, I might have to wait because...I have new symptoms and I wanted to know if anyone here has had or knows anyone who has had this. A month ago my lower molars began hurting like crazy and gums were swollen with a red ring around the teeth. The pain spread to my whole jawbone. It hurts terribly to swallow, chew and talk. I have an earache. I saw my dentist, an oral surgeon and an endodontist and I do NOT have teeth problems. Its not TMJ. The all knowing internet lists these as the exact symptoms of oral/throat cancer. The ENT did a thorough search and he said there is nothing to biopsy. Swollen neck does not show nodes needing biopsies. I spent 8 hrs in the ER the pain was so bad, and 2 ct scans showed no infection,no absess, no masses. I've had 3 rounds of prednisone/round of antibiotice/on magic mouthwash/anti-inflammatory/muscle relaxers for 3 weeks. Also, massage. My ent agrees that it reeks of cancer, but just not finding the source. At this point..I just want relief of some sort other than hydrocodone x10.
Is this just my body betraying me once again with random things to prevent me from ever getting over the bc? or is 'it' back? Either way, I am anxious to get to the bottom of this. Anyone have any ideas? I go back Wednesday for another 'probe'.
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titan - I was told the ovarian/BC connection is strong when you're BRCA1. I am and will be having ovaries taken out on the 20th. I'm not sure the connection has much to do with TN. Unfortunately, I have both.
thinking of you all
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Ruth - So very sorry for your pain and worry. Wishing you quick resolution. Jan
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Dear Ruth - my heart truly goes out to you. In an odd way it was a relief to me when I received my recent dx. Of course, it would have been more of a relief if I did not have cancer - but deep inside I knew that the cancer was still in my body - I sensed it and felt it in many ways - once it was confirmed, I could start fighting again. I strongly suspect that my liver will be the next place my mets are discovered - I am having intuitive feelings and pain - two indicators I do not ignore.
My thoughts are with you
Sherry
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Hello Ruth,
I was so sorry to hear that you are in so much pain and I do hope you will find out what is wrong. I was wondering whether you have been taking any bisphosphonates. They are widely prescribed for osteoporosis which can result from cancer treatment, and they can cause jaw necrosis which is serious. It is just a thought.
Wishing you well, Sylvia.
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Reality -- sorry you are not feeling well and havingto go through this new round. Thank you for posting and answering questions.
To all -- this is a wonderful discussion site. Thanks to all of you for your insights.0 -
Bernie...re: cancer fatigue...had some of those symptoms before I was diagnosed...along with losing weight and my hair looked like crap...I thought it was menopause setting it...not....
But knowledge really is power and now I know to not shrug anything different off.
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My love to all of you.
My cancer unit is taking the fatigue issue extremely seriously. It explains so much about what we are going through after treatment. The major concern for me is as being manic Bipolar my stress levels go through the roof. Stress is known to be a factor in BC reoccurence.
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