Calling all triple negative breast cancer patients in the UK
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thanks Sylvia really concerned about what they will use and the combinations. I have been told ac and taxol but do they sometimes use 3. My oncologist really positive and with no lymph node involve the. Need to get positive. I was concerned tho with the focal vascular invasion comment so I want chemo asa
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Hello 4everStrong,
I am sure everything will go fine with the radiotherapy and it is good to know that you are ready to face it. Radiotherapy is supposed to mop up any stray cancer cells that may have been missed.
With the standard treatment of surgery, chemotherapy and radiotherapy, the cancer will have had a good kicking and will hopefully have been kicked into the long grass for good.
After this standard treatment what goes on seems to vary. I had a CAT scan and bone nuclide scan before and after treatment. I then went on to regular check ups every three months for about two years. These check ups would alternate between my consultant breast cancer surgeon and my oncologist. These were just physical check ups of the site of the mastectomy, the other breast and around the neck area and under the arms. This was the procedure with both the breast consultant and the oncologist. They told me they were looking for anything that was not smooth. After a couple of years these check ups went to every six months, again alternating between the breast cancer consultant and the oncologist. After five years I was discharged from the breast cancer consultant, but continued with yearly check ups with the oncologist. It seemed to be usual with patients with hormonal breast cancer to be discharged after five years. However, probably because of TNBC and no drugs available to take after the standard treatment, I stayed with my oncologist until I had reached ten years and then she said she thought I was ready to be discharged.
During those ten years I had mammograms about every three years. Although I am not happy with mammograms and wonder if they do more harm than good, I did have them.
When I was discharged the oncologist seemed optimistic that I would remain in the clear, but she told me, if I felt something was wrong, to go to my GP and get referred back to her. I am now over eleven years since diagnosis and feel fine, but there is always that lingering anxiety about recurrence or metastases.
When you have finished your radiotherapy you should ask for details about post treatment. It may be different in France. I know that in the US there seems to be more thorough treatments, but of course their medical system is insurance based and ours is NHS State sponsored.
I have not forgotten your links and I will try to read them during this week.
I was interested to know that you are from Algeria, but educated in the UK. What kind of studies did you do in the UK and where? Did you go to school here and go through GCSEs, A levels etc.? I ask this because I was a teacher of French and English as a second language. I taught mainly in France and Morocco and then a little bit here in the UK. Morocco was very interesting because the students had such a thirst for learning and they learned to speak English very quickly. Teaching French here in the UK was enjoyable but I felt English children struggled more to learn a foreign language. I love French and did a BA hons degree at a university here in the UK. What do you do as a career?
I was born in London but since university have lived in France, Morocco and Canada. I am now in Devon in the south west of England.
I agree it is truly shocking what has been happening recently in France, Germany and Belgium and I shall never forget the bombings that happened here in London in July 2005, not long after I had been diagnosed with breast cancer.
You mentioned that there is a Presidential election in France in 2017. I do not think Francois Hollande will be re-elected in 2017. In fact, something I heard on the radio this morning makes me think he may step down and not put himself up for re-election. I know that he has not been very popular.
If there is anything you want to know about radiotherapy, please let us know. I am assuming that you had a pre-radiotherapy appointment and that you had to lie on a prototype of the radiotherapy machine and were mapped out carefully with pinpoints to show the exact position for the radiotherapy treatment. It would be interesting to hear your own personal experience of radiotherapy. I remember feeling very small lying on the actual machine but the treatment was soon over.
I hope you are enjoying the summer in Paris with your young children.
That is about all for now.
Fond thoughts.
Sylvia xxxx
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Hello Kathseward,
I think you will feel much better when you get started on August 4th. In the meantime, try to keep yourself busy and prepare for the start of chemotherapy. Do not worry about the combination of chemotherapy drugs, as I am sure you will be given the ones that the oncologist thinks are the best for you. There are different combinations. The one that you are going to have is one of the most common. You are quite right that there are sometimes three. There can be a combination that is called FEC. This stands for fluorouracil, epirubicin and cyclophosphomide. Instead of epirubicin some patients have doxorubicin. These two belong to the same group. The taxanes are often used alone and some patients have docetaxel (Taxotere) and others have paclitaxel (Taxol).
My oncologist told me that epirubicin was less toxic than doxorubicin, but I do not know if that is true. I know that when I was going through treatment they were calling epirubicin the Red Devil because it turned your urine pink.
It is a positive that you have no lymph nodes affected and your tumour is very, very small.
I noticed you have not put the grade of your tumour. Most TNBCs are grade 3 but not all of them are, some are grade 2.
I noticed in your details that you have not put the type of breast cancer that you have. Most of the tumours are invasive ductal carcinoma (IDC). This is used to describe breast cancers of no special type. You might like to ask about this.
While you are waiting to start why not tell us a little about yourself. We all need to define ourselves as something other than cancer patients. Why not tell us where you live, your age, family and your special interests or hobbies. All this will get your mind focussed away from breast cancer.
If there is anything you need to know about chemotherapy before you start, do not hesitate to ask. We have all been through it.
Fond thoughts.
Sylvia xxxx
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Hello lilyp6,
I do not know whether you are viewing this thread or not, but I wanted to say you are welcome to post and talk about anything you like to take your mind off what you are going through. You will find great comfort and friendliness here.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
Congratulations on being so persistent with your GP. We have a right to know what is going on with our bodies and why.
I was interested to know that you have done some reflexology. It sounds as though you get some benefit from it.
I can understand how much you must miss your husband. Do you do anything special to remember him on his birthday? These are dates we never forget and I can understand how lonely you must get.
I do hope you will get some cooler weather this week. When it is too hot it is debilitating and we lack energy. I do not like the heat at all now. I sometimes wonder how I managed three years in the south of Morocco and a couple of years in Toulouse in the south of France. The summers in Canada were hot too and the mosquitoes and black fly were dreadful, but everything was air-conditioned.
I shall be interested to know whether you find anything to help you at your local health food store. Here in Exmouth we have three stores and they sell all kinds of stuff. Some of it very expensive, such as powders to make into smoothies. I do not know if they really do us any good.
I have never had an EMG and had not heard of it here until you mentioned it. You are quite right about the UK. I think we are behind the times.
I need to find time to print off the links from 4everStrong. I do not seem to have enough hours in the day to do everything I want.
Are you reading any books about cancer these days?
You will be interested to know that I found an article in the i paper this week. It was under Cover Story and entitled Alcohol linked to seven types of cancer in new warning of risks. I am sure you will be interested to read it. It is by Dean Kirby.
Under Review – Key Points
Alcohol is linked to cancer of the liver, bowel, colon, mouth and throat, larynx, oesophagus and breast.
There is no safe level for drinking.
Six percent of all cancer deaths are now attributed to alcohol.
Heavy drinkers face the biggest level of risk.
Stopping drinking reduces the risk for some cancers.
Campaigners want warning labels on alcoholic drinks.
Ministers are being urged to take immediate preventative action.
Women who regularly drink two units a day increase their likelihood of breast cancer by 16%.
On the same page in the i paper and part of the same article, under Comment, there is the title People are still unaware of the health risks by Dr Jana Witt of Cancer Research. It is well worth reading. One line I picked up on was The liver is widely linked to alcohol damage but people rarely know alcohol can also cause breast cancer. The impact drinking has on hormones is thought to be behind this link.
The article also talks about how in other parts of the body, when the liver breaks down, it produces a chemical called acetaldehyde which can cause cancer. Acetaldehyde can damage the material inside cells and stop them from being able to repair themselves.
Smoking is still the biggest preventable cause of cancer, followed by obesity but alcohol is also there.
I am sure you will find these on line and read them.
https://inews.co.uk/essentials/news/health/alcohol-linked-seven-types-cancer-new-warning-risks/
As far as I am concerned, it is best to stay away from alcohol altogether. It is an addictive drug that does the body no good. The same goes for smoking. I am sure obesity is up there as well and causes all kinds of chronic illness. I would also add stress and the birth control pill and of course unhealthy diets and lack of exercise.
There is also an article in the Daily Express, Friday July 22nd, by Mark Reynolds entitled Healthy food, sleep and exercise...better than pills in fighting diabetes and on the front page of the paper, introducing this article, Why nuts and olive oil can help beat diabetes.
I shall write more about this later.
Keep well and many thanks for all you do on the thread.
I was wondering what has happened to adagio from whom we have not heard in a while.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I have been looking through various threads on TNBC and I have come across some words and comments on some posts and was wondering whether any of you can shed some light on the following things, as we do need to be interactive and participate in what is going on.
What does anyone know about the drug pembronician?
What does anyone know about RCB-2 RCB-1 ?
Can anyone answer the following question?
Can TNBC also be luminal A? I came across this and I do remember that hormonal breast cancer can be divided into luminal A and luminal B, but I did not associate these with TNBC.
I also discovered a drug called Opdivo – immonotherapy treatment and someone was having it for metastatic breast cancer to the bone. Any comments?
If any of you have been through chemotherapy and radiotherapy and have any tips to help those now going through these treatments, your posts would be most welcome.
Many thanks.
Best wishes.
Sylvia
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Hello everyone,
I was just wondering how adagio, Amanda10, Michael and PeterandLiz are getting on. We have not heard from you in a while.
Hello sam52, we seem to be out of touch. I would love to hear from you and to know you are well and whether you have now left London and teaching and are settled in Worcestershire. I think you are now 15 years out since diagnosis. I remember you were hormonal and not TNBC.
Best wishes to everyone.
Sylvia
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Hello Everyone,
I have just been checking back to make sure I had not forgetting anyone.
Hello Valstin52, How are you getting on with radiotherapy. Have you any tips for others going through it?
Hello More Shoes, We have not heard from you recently. I hope all is fine.
Hello JanetCo, I know that you are newly diagnosed. Have you started treatment?
Hello Clauclau, How are you getting on? Did you finish treatment without radiotherapy.How are you getting on?
Best wishes to you all.
Sylvia xxxx.
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Hi Sylvia,
These two TNBC threads are wonderful. Thanks for calling my attention to them. I am trying to work through most of my treatments, so I tend to read on my tablet when I wake up, and right before I go to sleep, usually. I am never alone, but when it's just my tablet, it's a real pain to type one letter at a time. I am looking forward to reading through both threads, because our concerns are a little different from the other cancer types. I'll also recommend them to a TNBC friend I met from Birmingham who I met at the hospital where I was treated.
I didn't research very much about TN at first, and I'm still holding back - trying not to get to scared about it. In my case, ignorance is helping me out.
My powers of denial, or whatever other coping mechanisms that I've gained in 47 years are telling me that I will be one of the survivors. I am just getting on with it. I don't feel doomed at all, and I prefer to keep it like that, mentally and emotionally.So I'll be here, reading more than posting, most likely, but also asking questions. Right now, after 8 chemo treatments, my tumor has shrunk to the point where I can't feel it. I am leaning toward a BMX for symmetry, but most importantly, I don't want to keep going back for surgeries. I am aware that the risk of recurrence is not zero even then, but I think I might have difficulty if I am lucky to be without evidence of disease when that time comes. It will be difficult for me to get my mind around that paradox, which I'm sure others have faced. I will know more when I have a chance to read, but did most people in this thread decide upon BMX when it was not absolutely necessary? Has this changed over the years with improved treatments? Did anyone regret doing less than that?
Cheers, and thanks for your warm welcome,
Pam
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Hello Pam,
Thank you for your interesting post and I must say you look lovely on your photo.
Thank you for your kind words about the two TNBC threads. I am so glad that Titan and I started these threads and they have been going for more or less the same amount of time. Titan inspired me to start one and it was because I thought TNBC was in the dark ages back in 2010. It was not even mentioned to me in that way by my medical team. They just said my breast cancer was not hormonal, so tamoxifen was no good for me and that the prognosis was not good. I did not take that much notice of the doom and gloom, but did delay orthodox treatment until I had exhausted other possibilities. I had chemotherapy first and just got on with it but I did take homoeopathic treatments at the same time, throughout my treatment and this was in support with my breast cancer consultant. She referred me to a homoeopathic consultant who dealt with breast cancer patients. The main thing that I took was oral Iscador during this time and for five years in all. I was not unwell during chemotherapy, just tired. I have no proof of how the homoeopathic treatment worked in conjunction with the orthodox treatment, but I feel it must have helped.
Are you finding it difficult to work and go through treatment? I shall understand if you do not post regularly, but we shall all be there supporting you and telling you that you will get through this.
I can tell you have a lot of determination and optimism and I think that goes a long way. It is good of you to recommend our threads to a friend.
I think you are wise not to research too much about TNBC. There is too much doom and gloom out there on the internet. I think when first diagnosed it is best just to take in what you need to get through treatment. All you really need to know is what type of cancer you have and the most common is IDC. You need to know the size of your tumour, the stage and the grade. The stage goes from 1 to 4 and the grade for TNBC is usually 3 but sometimes 2. You need to know whether you have any nodes affected. After this information you need to know your chemotherapy drug regime and how often you will have the drugs. I had my chemotherapy drugs every three weeks, but then every two weeks and every week were introduced, and women that have been through this thread have said they felt much better having weekly or two-weekly doses. If you have every three weeks you tend to feel worse the first week and then gradually feel better, but then you have to go back for the next dose.
How are you having your chemotherapy drugs administered? I had mine administered intravenously through the back of my hand while on a drip that was feeding the drugs. At my hospital patients were together sitting in armchairs in a ward as the drugs went through. It is quite a long day, getting to the hospital, signing in, waiting for the drugs to come from the pharmacy, sitting waiting for the drugs to go through your body, being allowed to go and then getting back home. For the first three days back home you have to take anti-sickness drugs etc. Does this sound like your own routine?
How are you feeling at this stage in your chemotherapy treatment? It sounds to me as though you are doing very well. Have you had any problems?
Please do ask any questions that arise during your chemotherapy. At least on these threads we have all been through the treatment and we shall have had our different reactions to the drugs.
I think it is a personal choice whether to have a simple mastectomy or a bilateral. I think younger women tend to opt for having both breasts removed and having reconstruction.
I did not have a choice between a lumpectomy and a mastectomy, but even if I had had the choice I would have chosen a mastectomy over a lumpectomy. I just feel better knowing that I have had the whole breast removed. I did not contemplate having the good breast removed nor did I want any reconstruction. I know that women who have the faulty genes BRCA1 or BRCA2 tend to go for having both breasts removed, as well as having their ovaries removed.
Let us know what you decide and have a talk about it with your medical team.
Wishing you all the best.
Fond thoughts.
Sylvia xxxx
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Hi, KathSeward,
I see you are looking ahead to starting chemo next week, I know it is all overwhelming at first. This is not something any of us are schooled in until suddenly we are thrown in the pool and inundated with information. First things first, you are hopefully at a clinic or hospital with good doctor (s). You have plans to start the chemo protocol next week, you are having the Adriamycin with Cytoxan, followed by Taxotere on its' own. That is the AC & T. The Taxotere will probably be given in 12 weekly doses, while the other 2 drugs will probably be given together every 3 weeks or every 2 weeks first, before the Taxotere. You are young and seem to be otherwise healthy, you will get through it all.
I won't tell you to stay off the Internet, people told me that and I found it impossible. I was given a lot of information at the clinic about BC, but not much about TNBC. Most of that I found online, and when I found this place I found friends as well.
90% chance of no recurrence sounds great, that is better than average. I did not have that test at diagnosis, I suppose it wasn't around then, not sure. I am going on guesswork!
You have no lymph nodes involved, that is very good news. Focal vascular invasion seems to be a possibility of being in the veins but still, it's not in the lymph nodes. From the little I know, the lymph system is doing its' job by capturing the bad stuff and keeping it from spreading. My knowledge is not very scholarly, once they start talking numbers and p53s and so forth, I get a little lost!!
We are here for you, anything you want to talk about is fine,
Talk soon, Mary
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HI lilyp6Pam,
I don't think I have welcomed you here, we suddenly have new posters and I am a little lost. I see our wonderful Sylvia has given you a warm welcome and I do too.
When I was diagnosed in Jan. '14, the oncologist said I would have a lumpectomy of my rt. breast. Next I saw the BC surgeon and she checked me out and agreed, but since I have small breasts she recommended having a double mastectomy and then reconstruction for cosmetic reasons because I wouldn't have much left of the rt. breast. At the time my husband was quite ill, i was in panic over his situation and mine and I just wanted to have whatever I had to do over with, so I told them to do surgery on the rt. breast only. I was told that with TNBC the chance of recurrence in the healthy breast was very small, so that was acceptable. Later I was called and told that because of the aggressive nature of the cancer, and its' non-round shape (basal-like, I assume) that total breast removal would be better. I agreed and off we went. I did not have reconstruction, there was so much going on in my life at the time and I had no one to nurse me through that. Unlike most women here, I had surgery before chemo, so that, I suppose, is why I don't know how well my cancer responded to the chemo. I'm not sure why the docs went that way, because at first they were talking neo-adjuvant chemo. I went along with it, because what did I know? I know more now, that's for sure.
Anyway, I say all that to say this. It's now 2 1/2 years later, I survived, my husband sadly did not. When I look back, it is all a blur. Good luck with your treatment, come back and tell us about how it's going and whatever else you want to talk about. We are interested, and there is always someone here.
Talk to you soon, Mary
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Hi Sylvia,
I do miss my husband, more rather than less. I am also missing his decisiveness, I tend to vacillate with decisions, getting started on projects, knowing where to go to get help with a problem etc. Even when he was quite ill and I was taking care of things, he would help me decide on a course of action and where to go for help when we needed it. I had a few projects I wanted to finish this summer, and they are not even started yet. I have hired people to take care of some work at the farm, months ago they agreed to do the work, that has not happened yet. I just feel I am spinning my wheels. The heat is enervating to me, that is a great word for it, it just wipes me out. My energy is low, and really all I want to do is go on trips. Perhaps I am depressed, that is a very real possiblity, I just feel overwhelmed at times.
I have not read any books on cancer lately, but I have kept up with the articles posted here. I did already read the article on alcohol and cancer, they seem to have really implicated it in many forms of cancer. From my perspective it seems odd, I know a lot of women with BC, I would say with a certainty that the great majority of them drink very little alcohol or none at all.
The health-food store we have somewhat locally is okay but quite expensive. I usually order what I want online. But 2 docs have recommended I talk to Jim at the local store about the neuropathy so I will try that next time I am in town, and will keep you posted. From what I hear and read, it is possible for some of the nerves to regenerate, but there is no guarantee that they will.
I am now doing acupuncture and massage regularly, with intermittent reflexology. I find these all helpful, but temporary fixes. I look at it as if I am on a maintenance schedule, as with a vehicle.
I think Adagio is very busy preparing for a 3-month trip to Australia in September. She was doing an itinerary and packing. It sounds like a daunting task.
There are suddenly a lot of new people here, I am trying to keep up! My heart goes out to them, they are all young to have to deal with this. We have to look at it this way, they are younger and also stronger, and will do well. And research simply must get more serious on finding out the cause of this epidemic! Thanks again to you, for starting this thread that gives us all a place to come.
What has happened to Chris Woollams? He seems to have disappeared again. I still get frequent messages from Ty Bollinger, but there are so many of them that are trying to sell more and more supplements, that I have started to not even read them all.
Have to go for now,
Talk to you soon, Mary
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Hello All
I'm on day 23/33 rads and it's going surprisingly well. My skin is inflamed but using silverdine cream, aquaphor and miaderm do the trick, 4 times a day. I also drink fortified water constantly.
The fatigue is only noticeable when I slow down for the day. Then it hits like a cloud. So I try to get whatever I need done earlier, because it's like someone shuts off a iight switch.
A little about me. I'm 56 years old, this is my second bout with breast cancer. Had it in the other breast 24 years ago. Had a lumpectomy and took what was then experimental tamoxifen for 1 year. I call it 'tv' breast cancer. I truly thought I was 'done'. No such thing. Married 36 years to the love of my life and 3 lovely children. All near me here in hot North Carolina. I'm a chicago native though.
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Hi, Valstim
Saw your post and wanted to respond, I am home waiting for man to come and fix my 2-day old water heater! Yep, had it put in 2 days ago, went to take a shower yesterday and bammo, cold water...so once again waiting for the plumber.
I am glad you are doing well with radiation, getting close to the finish. I did not have radiation, it was suggested for me but I was having a lot of arm, shoulder and surgery site pain at the time and they decided to not do it. Later found out I had partially torn rotator cuff, and neuropathy which was just causing flaring pain in the whole area because of the chemo reaction. Now of course, I rather wish I had had the radiation, but what's done is done. And I still have shoulder and arm pain anyway. Radiation seems to be the "mop-up" part of therapy, to get any cells left in the area. Apparently local area recurrence (LRR) is a risk for us, I learned that from one of the posts that 4everstrong linked.
So sorry you have been through this twice. Is this cancer related to the one you had 24 years ago?
I am 63, was 61 when this all started. I assume that is your husband with you in your pic? I lost mine last year and do miss him so much, it's great you have your man to support you through this. I am in Missouri and we are also having a hot, steamy summer.
Talk to you soon, Mary
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Thanks so much Mary. Yes that is my DH, and he is such a support as are my kids. I'm so thankful for them
So sorry Mary for your loss and thanks so much for the welcome.
This is a brand 'new' cancer. Difference breast, and as far as they can tell I was ER/PR positive last time. During those days a lot was not put into hormone receptors, it was cut it and burn it approach. How things have changed.
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Hi Sylvia
I have studied up until the baccalaureate (equiv. A level) in Algeria and then two years in the Uni. After that decided to take a break and study English only- did one year of English proficiency and then switched and finished my studies in a British University (BA hons in Economics and Management) and went on to study further and obtained a Masters in European Business. I now work in business development and business management; I am in sick leave until I finish my treatment.
Thank you for your support and concern.. I have started radiotherapy in beg June and have been through it until beg July, I am on a break now and will do radiation again (the second phase..the boost) in August. My mental is strong so I was able to manage just fine through treatments. The big difficulty for me is managing my emotions after the treatment ends.. all the pains and the aches and the anxiety around recurrence, don't know how to manage that yet. I might start to see whether I could do some counseling.. that might be helpful.
Tomorrow is my blood test and the day after is my appointment with MO. He wants to see me and see how I have been doing after all those healing issues. I will have a chat with him over my blood results (cross fingers, they will be within the norm) and also over what else we could do together to minimize recurrence (if we could do anything at all!!)
Wishing you the best
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Hi, Valstim
You are a strong women! .. you will also reach the end of treatment soon.. what does your doctor say about the next steps? Are you discussing trials at this point? Anything your doc said to do to help minimize the recurrence even down?
Great to see you are managing fine through radiotherapy.. agree that it is easier than chemotherapy.. as you may have read in my previous posting, I had to take a break in the middle of my radiotherapy due to an open wound, I was surprised to see that the effect of radiations continues even when I had stopped.. I had some peeling that came like two weeks after I had stopped radiation.. thankfully the doctor had explained that I might be experiencing this.
We need to stay strong and positive even when doubting.
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4everstrong,
I'm at the end of treatment and not a moment too soon. My MO would have considered xeloda if my genetic testing had been different. Healthy diet, low in bad fats, no sugar is what she recommends and staying active. She says she will watch me closely but not worry about me. I guess that's as good as it gets. I asked her does she have patients she worries about? She said yes.
So no trials for me. Not yet. I do know I have a good possibility of this progressing, due to it having been IBC/IDC and stage 3, but I also hold to hope that the treatments have bought me some valuable time, and I'm working on not thinking about this everyday when rads are done.
I can truly say before, 24 years ago, after that first year, I really did not think about breast cancer. It soon only became a yearly thing at mammogram time. I would have severe anxiety the weeks before and a few times had to go back and that was awful. Funny, my mammogram 7 months prior to diagnosis did not pick up anything, and to be a stage 3? I've had to do a lot of therapy and soul restructuring.
This thread as been exactly what I need. I thank and appreciate you ladies. Your posts mean so much. Even if I 'lurk' I read all that is written.
Val
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Hi. Can you tell me about vitamin D? It is vit D or vit D3
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Hi, Joy
I believe the difference is in the form it comes in. Vitamin D3 is cholecalciferol, it is easier for the body to assimilate this, it mimics the vitamin D of sunlight. So if you have a choice, get D3.
How are your chemo treatments going? Hope you are well!
Mary
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Hello Joy777,
I agree with Mary about the vitamin D3. I take this and I prefer Solgar softgel vitamin D3. I take 4,000 iu every day.
I have been reading your story in Looking for Members stories. What a really bad time you have been having. It just shows you how medical experts can differ in their opinions and diagnoses. Thank goodness you now have a diagnosis of IDC (invasive ductal carcinoma), and know your treatment plan. I am glad that you are back home and can now have a regular medical team.
At least you now have the surgery behind you and are getting through your chemotherapy. What chemotherapy drugs are you having?
I hope you will stay with us so that we can help you through your chemotherapy as it is a long journey.
Where is "home" exactly?
It is so awful to have breast cancer at such a young age and for it to have appeared at what should have been a time of great joy for you. Tell yourself you will get through this and that you will have that honeymoon.
Sending you fond thoughts.
Sylvia xxxx
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Hello 4everStrong,
Thank you for your most interesting post, which I shall answer tomorrow when I have more time.
To everyone else, going through treatment, whether it is surgery, chemotherapy or radiotherapy, just keep telling yourself that you are going to get through this.
We are all here for you. Ask whatever you like and rant as much as you like! We all do whatever we can to get us through and then we try to live as normally as possible.
Fond thoughts.
Sylvia xxxx
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Thank you. But when the doctor measures it in the blood, he measures D3 or D levels? I don't know what to request to see if it is low.
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Hi Joy
In my blood test results it is called vitamin D (25 OH D). I have been measuring my vitamin D since I have finished my chemotherapy, for my case it had been in the low.
I have been taking vitamin D monthly since. Actually now that I am thinking about it, I am taking a high dose every month but will ask my MO to give me a daily dose, it may be better for my organism to be covered with a daily dose, rather than a big dose and then may be it is badly absorbed for whatever reason.
I am also thinking of asking my MO about Folic Acid as supplement, i will let you know what he says.
Good luck with Chemotherapy, it will soon be over and behind you!
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Thanks for your answers.
We have 2 options:
25-hidroxi-vit d3 and 1.25 dihidroxi-vit d. I think I should test my d3 in this case. I think.
I didn't ask my onc yet. On monday I have my appointment and I wanted to have the tests done until minday to know what to tell him.
Sylvia, I am from Romania.
I read this forum every day, but I don't post so often...
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Hi Mary
I am really sorry about your loss, loosing someone so close is truly terrible, life is really full of surprises, the good and bad ones.
If I may!! I will give you a thought.. what about trying to avoid getting hurt by his memory, try and think about him to remember nice things and make his memory cheer you up. I know this sounds weird- I have been telling my husband and sisters just that about myself.. if the worst was to happen to me, I know you will miss me but don't let this hurt you, let it give you a nice feeling .. we have met and had a chance of knowing each other and growing by each other sides.. it is sad that it stopped but it is nice to have lived it.
Learn to live and enjoy your new life and adjust to it the way you want to adjust to it. You are allowed to do now things differently!
Those are of course just thoughts and I don't know much about your details and your life. It may be that it is impossible for you to do that, and in this case, please remember time is a healer!
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4everstrong, are you having MRIs for follow up?
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For the time being just blood test. my MO wants me to finish the treatment before I have any other checks, so I have to finish radiation first.
I will of course, as I always do in all my visits ask the questions about other tests we could do.. don't know what he will say? I intended to ask for a PET scan when I am done with radiation.
If all goes to plan, I might finish radiation mid/end August. So after that will start the follow up visits.
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i'm terrified. My hip aches, my head is blurry, my knee aches, my other breast, my liver, my back... I think I'm becoming paranoid.
I would want an mri between EC and paclitaxel, but I don't think my onc will agree with it, eventhough it is not paid by insurrance, so I will pay for it.
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