Calling all triple negative breast cancer patients in the UK
Comments
-
Hello Everybody and thank you for some very interesting and informative posts.
Hello Christina1961. Thank you for your post and for the philosophical theme in it. I think that your anxiety soothing technique is brilliant and there is nothing wrong with using distraction to relax you. Thank you for your information about the basal marker 5/6 cytokeratin. If 70% of TNBC are basal phenotype, that means a lot of us with TNBC must be basal type.The information you have given us makes me even more convinced that our medical teams are not as open with us over here. It could be that I am out of date, so, it would be so useful if those of you from the UK who were given this marker would let us know. I do not know if my tumour was tested for this in 2005. I remember asking sometime during treatment about basal type tumours and whether mine was one. I was told it probably was, but I do not think they retested my tumour to find out. They were probably going on statistics. Much later on, during a check up, I asked again about basal type, and that particular doctor said she thought all TN were basal type. Things must have moved on since then.
As you said, Christina, statistics work best with large numbers, and we are all individuals. Whatever our BC, hormonal or TN, no one can say for sure how we are going to react and what will develop. I had a lot of anxiety in the early days, and get a bit frightened with all the new information coming out, but most of the time I just live the day and hope for the best.
Hello Suze35. Thank you for your post.
I was so glad to know that your scan was clear and I do hope that everything will go well when you start your treatment with Avastin and Xeloda on June 20th.
Thank you for your references about EGFR and ANR that I shall certainly be looking at a little later. Do you have any idea how many TNBCs have these receptors and how it affects treatment options? Do they add other drugs to the standard ones that all TNBCs get?
You are very lucky to have a progressive doctor.
Please keep posting.
About trying to save in breastcancer.org, it is silly but you cannot save as you write, so, if you are writing something long, you can suddenly lose everything. However, there is a way that my husband showed me to save, and I use that most of the time. I create my post in my word processor, saving as I write. I then copy it to the clipboard, go to the thread and paste into the posting box. Job done!
Hello suelynn
Thank you for your post. I was so sorry to hear about your mother and to learn that she has TNBC with mets. It must have been quite a shock after being in the clear for six years. I had never heard of androgen positive TNBC until another member of our thread mentioned to another member about getting tested for ANR (androgen receptor). Receptors are something that tumours have on them that encourage cancer cells to grow.
If you are viewing, Josephine, or anybody else that has more information, please let us know.
I found your post of great interest and am sure that everyone viewing this thread will feel the same. I know nothing about the drug bicalutamide, but I shall certainly research it. Drugs that work for prostate cancer should be able to work for breast cancer, especially if hormones are involved. I do hope your mother will have some success with her treatment.
Like your mother, I was not the normal candidate for TNBC in that I was 62 when I was diagnosed, and quickly found out that TNBC normally affects younger women. There are, however, quite a lot of older women being diagnosed. You might like to look at another thread on this forum, called "Not a typical TNBC". I found it very useful when I first started looking on the forum, and posted not so long ago in an attempt to revive it from its dormant state. Ironically, I am eleven days away from my sixth year of being in the clear. That will be on June 20th. Reading your post has brought me back to the reality of what a nightmare it is to have been diagnosed with BC and TN in particular. You can never feel secure and never have real peace of mind. I had more or less the same chemotherapy as your mother and had it as neo-adjuvant, because the tumour was large. Only one node, the sentinel node, was affected. After a mastectomy I had three weeks of radiotherapy and was then told there was no visible sign of cancer in my body. What kind of surgery did your mother have?
Thank you for the information for TEK2009. I hope she will look up the TNBCfoundation.org.
The way that I do links and the way I write my posts is to do them in the word processor. If you click in the address bar of your browser and then copy the web address (control + C), which puts the address into the clipboard. You can then paste it into your post that you are creating in your word processor.
You cannot save as you write in the thread.
There are so many of you that have not posted in a while and I am sure that we would all love to hear from you and know how you are doing. A special Hello to jinglebell, FreddieDLH, Spamy61, Micheyd, New Alex, PenelopeP, Hymil, Brena, Eskimo3, Britchick, ElaineD, Luah. I wanted to say hello to Chilimac, who was writing on behalf of her sisters and to ask how things are. You and suelynn have something in common in that you are writing on behalf of others. A special hello as well to TEK2009. I am thinking of you.
Many thanks to those of you that have sent me PMs. I hope I have been of some help and comfort to you and thank you for your kind words about the thread.
Hello to Karen3 and Gillyone. Your posts are so useful.
That is all for now. Wishing all of you all the best.
Sylvia
0 -
Anyone know how to upload pdf files to this thread? I have down loaded a ood review about AR and TNBC (including trials) but access to URL is limited to those that subscribe or through University electronic library
Josephine
0 -
Hello Josephine
Thank you for your post. I was so glad to know that your scan went well and that all remains clear. You must be really glad to be able to have a chemo holiday, as we all know how taxing chemo is on the body. What are the side effects of Avastin and Zometa?You mentioned that bone mets are harder to assess by CT. Can this be assessed by the bone nucleide scan that I had when diagnosed, because they thought, due to elevated calcium levels, that I had bone mets. Luckily for me, the oncologist did a blood test to have a look at my parathyroid hormone level, and diagnosed hyperparathyroidism (an over active parathyroid gland). This was later cured by surgery.
I hope everything will go well with the brain MRI scan next month. You must be weary of scans, tests and hospital visits. Please let us know how you get on.
It is useful to know that you have to request your EGFR and AR status, because they are not done routinely. I have a feeling that in the future, there may well be routine testing. It is a bit like the way they now test for HER2. That was not always the case. Since the experts are now saying that there are six sub-groups for TNBC, we have to know what those sub-groups are and whether they will all respond to standard chemotherapy treatment. I know of cases of women who, in the past, were classed as Tamoxifen failures. This could have meant that they had TNBC or some sub-group of it. Originally, as I understand it, all women with BC were given Tamoxifen, and obviously this would not have worked for TNBCs. Progress is slow, but I do hope more targeted treatments will soon appear.
It is useful to know that if you are AR+ there is a monoclonal antibody against this receptor. Do you know anything about the drug bicalutamide mentioned by suelynn? Do you know anything about the other sub-types?
I read recently that 45,000 women a year (in the UK) are diagnosed with BC. I also read that of those, 9,000 are diagnosed with TNBC. Of the women diagnosed with TNBC, 70% belong to the sub-group basal type, so that leaves 30% of TNBCs that belong to the five other groups. My understanding is that AR+ represents a very small sub-type. Do you have any idea what the other four sub-groups are? Do those that are EGFR+ represent another sub-type and if so, do you know what the monoclonal antibody drugs are for this type?
I just wish I had had all this information back in 2004, when I was diagnosed. It just leaves me wondering what the details were in my pathology report. Six years after the event, I am not sure I want the details and I do not know if they would serve any purpose, except to worry me.
I find it pretty frightening to hear of all these cases of recurrence and mets. On the Calling all TNS thread there seems to be so many women with recurrence and spread, and so many young women being diagnosed. Do you think that too many mammograms are being done, exposing young women to too much radiation over the years. Do you think that the toxic, damaging treatment with chemo and radiation eventually brings about recurrence and metastases? I know there is a school of medical thought that has these views.
That is all for now. Have a good weekend and a good chemo rest.
Warm thoughts are going your way from all of us.
Sylvia.0 -
Hi everyone,
I did speak with the doc about my path report and that wasn't the test for basal type breast cancer, so I don't know if I have it or not. The other tests are not done routinely unless in a trial or study situation where I go. If he feels the need to get me into a trial, or if I find a trial I might want in, then more testing may be done on my tissue. Knowing the results of these tests with no treatment is useless, so I think you are right Sylvia, these tests will be done more in the future as more targeted therapies come out and as more trials are out. Kinda frustrating. I want them now! I have a ct scan scheduled for the 15th to see if the ac is shrinking my tumors. Please keep your fingers crossed that it is working!
0 -
Hello all just discovered your thread and very glad to be able to read about other women who have been going through similar experiences to my own..I was diagnosed with TNBC about 3 months ago...Grade 3 and a large tumour (almost 5cm) in my right breast..Wanted to be treated immediately, and am having 8 sessions of neoadjuvant chemotherapy a session every 3 weeks...Was started off on FEC for 4 sessions, and then had an ultrasound which showed that it had shrunk to a max of 2cm, so I felt really relieved that chemo was working...yesterday I started on Taxotere which I will continue with. After that I will be having surgery, still to be decided whether it will be a lumpectormy or mastectomy, but I have felt all along that I would feel more se cure having a mastectomy straight away, and probably a prophylactic mastectomy of the second breast as well... My oncologist has already told me that I will have to have a month of radiotherapy regardless of the surgery I choose to go for...
I have 2 sisters-in-law who had a second breast tumour after several years (one of them had taken Tamoxifen for 5 years the other, like me was TN) and they both now say that they would have chosen to have had a double mastectomy rather than go through the whole process a second time... any thoughts on this would be appreciated...
Thanks to all of you, it's great to be able to feel a part of this community!
0 -
Having a second primary in my opposite breeast, I wish I would have bmx the first time. No guarantees that would stop a new cancer if a small amount of tissue is left, but drastically reduces the risk.
0 -
Hi everyone, just found this thread. I live in southern ireland, very rural. (moved to the home place here in 1998, originally from hertfordshire) . Was diagnosed in feb and had lump removed 7th march. Now in the middle of A/C chemo regime. Then will have six weeks of rads. Coping fairly well. Hubbie was laid of from work last week so that's not too good. Never had any cancer in the family, high blood pressure, heart trouble is the norm. I'm also Bipolar on the manic side, the steroids work wonders, house never been so clean.
Bernie
0 -
Hello Everyone
It is a very wet and windy Sunday morning here in Exmouth, Devon, UK, and I have just been checking the thread.First of all I would like to welcome Maria_Malta and BernieEllen to our thread and I am quite sure you will get a lot of help and support here and that we shall all be wishing you well as you go through your treatment. It may seem a long and difficult journey but you can get through this, and you have to keep looking ahead until your treatment is finished.
The chemotherapy is the longest and most difficult part of the treatment, but, from my own experience, it can be done and side effects can be kept to the minimum if you get plenty of rest, drink plenty of water, keep to healthy nutrition and generally look after yourself. Let us know how you get on. On this thread each of us can only express our own experiences and say how we dealt with them, as we all react differently to each stage of our treatment.
To Maria_Malta, you have a difficult decision to make about lumpectomy or mastectomy. I did not have a choice, but would have opted for a mastectomy anyway, as I feel a mastectomy gave me additional assurance that all cancer cells had been caught, and because I had a very large tumour. As for a prophylactic mastectomy of the second breast, that is also a difficult decision, but I can understand why you would want to do that. I did not have any reconstruction surgery, so I wear a lightweight prosthesis in my bra. Without wearing it, at home, I feel unbalanced in my body, and I feel that the weight of the left breast, and lack of a right breast, has slightly tilted my body to the left. It is probably not noticed by others but I notice it.
BernieEllen, thank you for your post. Welcome to our thread and thank you for sharing your experiences so far. None of us wants to be here, but at least we can all support one another. Good luck as you go through chemotherapy. I hope you will not find chemotherapy too difficult and was glad to know that you are coping well.
I was sorry to hear that your husband has been laid off from work. Let us hope he will find another job soon. They do say it never rains but it pours. You will get through this and will need to support each other. We must never forget that, horrendous as a diagnosis of cancer is for us, it is very hard on our families and friends. They will be as frightened and concerned as we are. If you have children they will also need reassurance that all will be well.
When you are going through treatment for cancer, remember there is a lot of help and support out there. Do not shut yourself in. Make full use of your oncologist, breast cancer consultant, breast cancer nurses, support charities, district nurses, Hospiscare nurses and MacMillan nurses, not to mention your GP. They are there to help you.
I was glad to know that you are coping with your bipolar and that the steroids are working well. I have a cousin who takes steroids from time to time for emphysema and she has told me how much they energise her!
Hello bkj66. Thank you for your post. Try not to worry about whether you have basal type TN or not, because, regardless of what type of TN we have, we all seem to be getting the same standard treatment. It is frustrating that it takes such a long time to go from trials to available treatment, but there is not a lot we can do about it. The only solution is somehow to get more and more publicity for and about TNBC. There is not enough about it in the media. Please let us know the results of your scan. We shall all be keeping our fingers crossed for you and wishing you all the best.
Best wishes to everyone.
Sylvia0 -
Hello again, Everyone.
I thought I would post some information about the latest news with TNBC and the six subtypes into which it is now being divided. This is what I have found.
Basal type: Apparently there are two basal types, BL1 and BL2. There is a basal marker 5/6 cytokeratin. It appears that basal like TNBC is sensitive to cisplatin. 80% of TNBCs are basal like. 54% of basal like TNBCs express EGFR. Researchers have shown that EGFR is a therapeutic target for women with TNBC.
When combined with the drug cisplatin, the anti EGFR antibody cetuximab (Erbitux) significantly improved the overall response rate and progression-free survival rate in this subset of breast cancer patients.
I do not know whether this regimen is now available for use outside of trials.
For more details see http://www.medscape.com/viewarticle/730311
Androgen Positive: Written AR+ or ANR+.
Trials have shown that women with the androgen receptor had a lower likelihood of responding yo standard chemotherapy drugs than those who do not show the androgen receptor. This subtype also known as LAR (luminal androgen receptor) is sensitive to the androgen receptor antagonist drug bicalutamide and to HSP90 inhibitors.
Apparently only a small minority of women with TNBC are ANR+.
For more details see http://www.ecancermedicalscience.com/news-insider-news.asp?itemId=543
Mesenchymal-like TNBC: Apparently there are two subgroups M (=mesenchymal) and MSL (=mesenshymal stem-like).
These two subgroups may preferentially respond to P13k/m tor inhibitors and dasatinib (an abl/Src inhibitor).
For more details see: http://www.jci.org/articles/view/45014
Immunomodulatory (IM):
I found the article on IM rather difficult to understand, so I shall leave it to all of you to have a look and see what you make of it.
http://www.jci.org/articles/view/45014
What I can conclude from all of the above and all the information now on the internet is that TNBC is definitely out of the shadows and is getting a lot of work done on it, so that there can be more targeted treatments after the standard chemotherapy (or part of that chemotherapy), surgery and radiotherapy. There has been a lot of progress made along the pathway that started with all breast cancer patients being given Tamoxifen, to differentiation between hormonal and TNBC, and now to subgroups within TNBC and possible treatments that will help with primary and secondary breast cancer. We have to keep our fingers crossed and look forward. Let us hope that TNBC will get more publicity in the media.
If any of you out there have been put into any of the above six subgroups, it would be helpful to hear from you.
Sylvia.
0 -
well done Sylvia for summarising info. That said. there is notl a distinct therapy option for those with TNBC that are more basal type than no (in otherwise it does not necessarily help at the moment knowing whether you are or not). However, that said for AR +ve TNBC there is the option of a monoclonal antibody (even though the response to chemo is less; which would be expected as these are hormone dependent, slower-growing tumours). I have survived dd AC/T every 2 weels for 8 weeks , and more recently docetaxol every 3 weeks x 6. Chemo is rubbish (as you know) even in the small group like me that has less side effects, but it is so non specific and the bone marrow stem cells have ' memory' which means with subsequent chemo, the ability to make rbc and wbc (red and white blood cells) is diminished. What we all need desperately is a speciifc cell surface protein that can be targetted. I am taking part in a pod cast this month and will forward on the useful info
Josephine
0 -
Hello Josephine
Thank you again for your invaluable post. It is most appreciated, especially as we all know what you are going through. I do agree that we need a targeted treatment, but I think it is going to prove a great challenge. In the meantime, the conventional treatment is keeping us all alive, but our bodies must be paying a high price.
I was very interested to know that you are taking part in a pod cast this month. Please keep us all posted about this. If possible, I would be most interested in listening to it.
Wishing you all the best.
Sylvia
0 -
Thanks for that Sylvia, I have been some of the forums but this site would have more of the information and people i can understand - if you know what i mean. No disrepect to anyone.
bernie
0 -
Hello Bernie
Thank you so much for your post and for your kind words. It is encouraging to know that you find the thread informative.
I have tried from the beginning to relate my own experiences with TNBC treatment, in such a way that newly diagnosed patients know what to expect and also to know that they can get through the treatment.
If there is anything that I, or others on the thread, can do to help and support you, please let us know. Are you going through chemotherapy at the moment? If you are not feeling well, or want some advice about side effects, please let us know. Just keep looking ahead.
Thinking of you.
Sylvia.
0 -
Hello bkj66
We shall be thinking of you on June 15th when you have your CT scan.
Best wishes
Sylvia
0 -
Have read the last few posts with interest, specially as my docs seem to think it not necessary to tell me all the details of the type of cancer other than TN, I am now wondering if there might not be other options for me but guess to know I need more detailed path reports. Would they tell me if it were EGFR and or ANR?
PS Xeloda (maintenance chemo) is ok so far but am on low dose as some of you know.
Thanks T
0 -
I meant to ask I think I have before but my latest recurrence looks remarkably like Inflammatory BC only Drs say it is same type of cancer cell I had first time round and they called it IDC but TN, any ideas whether it could have been IBC all along, from what I can see most IBC is TN.
0 -
Maria_Malta
I recently had a spread of my original cancer and had only had a lumpectomy, I asked myself the same question what if had had the mastectomy, however, there are no right answers and as I have discovered no guarantees, I did not have one but looking at how it is spreading in my lymphatic system I can see it probably would have served me no good. I think we each have to weigh up the situation, hear what the Drs say and then make up your own mind. I have a friend that went for the DMX as she was able to have reconstruction at the same time, but importantly it made her less nervous, but as I said above there are no guarantees even if you do that as the cancer can come back in a different way. One caveat is probably as mentioned your individual circumstances ie family history but also has it already got into lymph nodes and travelled far like mine had I probably would avoid the DMX. It has to be what you are comfortable with. Sorry if thats no help.
T
0 -
Hi everyone, thanks for the support. I'm having 6 rounds of A/C every 3 weeks followed by 6 weeks of rads. 3 chemo done so far, next on the 22nd. Mania hit me really hard after the last one. Problem now, veins are collapsing, arm very sore, so not sure what they are going to do next.
Hope you are all doing well
Bernie
0 -
Hi, I've been reading this thread for a few weeks, but this is the first time I've posted. I was diagnosed with TN at the end of February this year and have just finished my 5th cycle of chemo - four FEC and one Taxotere. After every chemo I've had some pain in my breast which lasted for a few days, but since the first taxotere the pain has been constant and the lump has swollen up again (at my half way MRI scan it had shrunk from 3cm to less than 1cm) to the extent that it feels as large as it did at the outset. I wondered if anyone else had experienced this kind of soreness/pain?
Alison
0 -
Dear Alif,
I appear to be having identical treatment, on Friday I had my 1st cycle of Taxotere after 4 of FEC....my ultrasound a fortnight ago showed that tumour had shrunk from almost 5cm to a max of 2 cm.....I have never felt any pain in my breast, but have no idea what is the norm... so sorry I can't help with that one... I am having quite a hard time with the Taxotere, the first 3 days were fine and I had a lot of energy as a result of the steroids I imagine, but yesterday and today (days 4 and 5) have been really tough..I'm totally exhausted and my joints ache terribly and have had to stay in bed most of the day... Nurofen helps a bit but not much...
Thanks TEK 2009 for comments re mx, still have some time to think aboutit tho pretty sure i'm going to go for it on both sides...
0 -
Maria Malta
I had 4 rounds of EC followed by 1 round of Taxol before they took me off it, I had horrendous bone and joint pain and went red in the face, from what I can tell many people have the joint pain I am afraid. You have 3 rounds left I guess. Wish you luck with it all.
T
0 -
Hello Everyone
I was glad to see that the thread is keeping busy and that you are all interacting.
To TEK2009:
You mentioned that your doctors do not think it necessary to tell you all the details of your breast cancer, other than that it is TN. In my opinion, if you want more details, even if your doctors do not think it is necessary, they have a duty to give you those details. You are the one with the breast cancer, it is your body and your life, you pay for the NHS and therefore your doctors' salaries, so they work for you. We are all entitled to have access to our medical records, and that surely must include any information that we want. That information should be given, regardless of whether it does not make any difference to the treatment.
You asked whether your doctors would tell you about EGFR and/or ANR. If I remember correctly, from a post from Josephine, you can get tested for these only on request, but that is not quite the same as your being told about them. What you should be told is that you have them but they are not currently tested as normal procedure. If I were going through breast cancer today, I would probably be asking for these tests, because I feel it is important to have a complete picture. All I know for sure about the tumour I had was that it was TNBC. Six years on that would no longer satisfy me, even if treatment was the same. We know that with ANR+ there is a targeted therapy.
I was glad to know that you are doing alright with Xeloda (capecitabine). Will the low dose be effective enough? How often are you being monitored to see what is happening? Have you had any problems with your mouth, such as mouth ulcers? Apparently it can cause them. Are you having regular blood checks? My understanding is that can affect the blood.
If anyone else is on Xeloda, please post to let us know how it is affecting you. Although we all react differently, it is useful to have interaction among those taking the same drugs.
You mentioned about your recurrence looking like inflammatory breast cancer. If it is worrying you and you are not completely convinced about your doctors' diagnosis, you can always get a second opinion. You have to be in control of your breast cancer.
According to what I have read, inflammatory breast cancer is one in which the cancer cells produce swelling of the whole breast and cancer cells grow along and block lymph channels in the breast and skin. As a result, the breast looks swollen, red and inflamed, and that is why it is called inflammatory breast cancer. There can also be discharge from the nipple or a lump underneath the arm. Symptoms can come on very suddenly. The skin of the breast may appear pitted and have ridges. It produces orange peel-like appearance - skin thickening - known as peau d'orange.
Again, it would be useful if anyone with inflammatory breast cancer could post and give us information, as it were, straight from the horse's mouth.
We all have to remember we are not medical experts, just normal women relating our experiences and giving any information we have gathered.
I think chemotherapy will be much the same but Herceptin will of course be given if the tumour is also HER2+. I think it looks as though IBC can be either positive or negative.
Apparently IBC is very rare.
I hope this information helps. Keep looking forward.
Sylvia.
0 -
Hello Bernie
I just wanted to say that if you are having trouble with your veins, there is the possibility of having a port installed, usually in the chest. I did not have it during treatment, but when I had the mastectomy, the oncologist advised a port be installed at the same time on the left hand side, because it was the right breast being removed. I went ahead because the oncologist thought it would be useful if the cancer came back. I was told that, if it did not come back, I could leave it in for life.
However, I was noit told that it would require me to go the chemotherapy ward to have it cleaned out every three months. I was not happy to learn that after having it done. I found it psychologically upsetting to return to the chemotherapy ward. I did go after the first three months and everything was fine. On my second visit the oncology nurse discovered that it was blocked and she could not clean it. I had to go for an ordinary x-ray to find out what was happening. It was discovered that the port had kinked and fractured. I was then told that this was a rare occurrence and that it would have to be removed under general anaesthetic. A few months later I had to go in for day surgery to have it removed. I had already said I did not want another one.
Although this was my own experience of a port, I would not want to discourage others from having it done. It seems to be quite current these days to have ports installed.
Once you inject chemotherapy into a vein (veins in the back of the hand), it damages the vein. This can result in the vein going hard and becoming sore. This should settle down after a few weeks.
My chemo nurse always had trouble finding a vein in the back of my left hand, as did the district nurse who came to my home to take blood just before each chemo session.
Best wishes
Sylvia
0 -
Hello AliF
I just wanted to welcome you to our thread. I was sorry to read that you have recently been diagnosed with TNBC and want to assure you that we shall help and support you on this thread.You mentioned that you have been experiencing pain during your treatment and that it has got worse since you started Taxotere (docetaxel). The wisest thing you can do is to tell your oncologist about this, so that she can find out if anything is wrong or whether it just the chemotherapy that is causing the pain. This is important, especially if you feel that the tumour has got bigger. I experienced no pain at all during Taxotere, nor during epirubicin and cyclophosphamide. I did not have fluorouracil (F).
If anyone on the thread had FEC and then Taxotere and experienced pain, please let us know.
Just out of interest, are you from the US or the UK?
Keep looking forward.
Sylvia
0 -
Hello every one,
I came across a few snippets of information during the day that I thought some of you might find interesting.I found that there are vaccine trials for triple negative breast cancer in the offing, but do not know if this is happening in the UK. Do any of you have any information about this?
On another thread someone was writing about pathological and clinical inflammatory breast cancer that she was suffering from. I know that this is a rare form of cancer, but we should have as much information as possible about the various forms of breast cancer.
There is also a forum for IBC on breastcancer.org.
Apparently there is a product called neurontin that is being used for neuropathy to the feet, as well as L-Glutamine powder. I was told by my GP that nothing could be done for neuropathy, not to mention by a podiatrist.
I have been reading up once more about the p53 gene. I remember a discussion about it way back in 2006 with my breast cancer care nurse. I was interested to see it popping up again. p53 is a gene that is involved in controlling the growth of cells. When it is faulty there is not sufficient control and cells over-grow and cancer can develop. An abnormal p53 gene can result in the formation of breast cancers and others. I read many years ago that there was a theory that the BRCA genes were possibly the result of damaged p53. I also read that TNBC might be caused by the p53 gene somehow being silenced, through a process called methylation. I wondered at the time whether the conventional breast cancer treatment somehow remedied this and if not how TNBC patients survived if the gene was still silenced. I also read that this malfunctioning of p53 resulted in women getting cancer early.
Do any of you know anything about p53?
Thinking of you all.
Sylvia.
0 -
Hi Sylvia, I do not know anything about p53.
I want to give you an update of my ct scan. My tumor was 99% gone! Radiologist actually said there was no cancer to be seen at the sight of the metal clip that was placed by the tumor at biopsy. My internal mammary nodes, which started at 1 to 2 cm are now about 2 to 3 mm! Doc thinks they only have dead tissue in them as this is normal size now! Maybe there is something to the 24 hour ac drip! This is after my 3rd ac treatment, 3 left to go. I was hoping for a 50% reduction in tumor, and I get this news! I don't think it has sunk in quite yet!
0 -
Hello bkj66
I have just read your post and just wanted to say how overjoyed I am about your excellent news. You must be walking around on cloud 9. I am sure that everyone on this thread is so happy for you. It will encourage all of us to persevere whatever news we get. Keep up the good work and keep up your posts to us, so that we all know what is going on.
Best wishes
Sylvia
0 -
To suze35
We shall be thinking of you on June 20th when you start Avastin and Xeloda.
To suelynn
I hope you are bearing up as you help your mother with her treatment. You are both in our thoughts.
Sylvia
0 -
To TEK2009
I was checking the threads that I usually look at and saw your post on the IBC thread. According to my oncologist, a rash is the first sign of recurrence. She told me that should my breast cancer recurr, the most likely site was along the scar where I had my mastectomy and that it would be first of all in the form of a rash. I am always keeping a look out for a rash. I remember other women mentioning a rash and recurrence. If I were you I would not put anything on it without consulting the medical team.
Thinking of you.
Sylvia
0 -
thanks Sylia, will be having chemo next week and see how things go. don't really want a port.
Thinking of you all
Bernie
0
