Calling all triple negative breast cancer patients in the UK
Comments
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Hello Karen
Thank you for your post and all the useful information. At least we are all becoming more and more informed about TNBC. I think whatever our own particular status with TN, we can just live each day to the full and not worry too mush about the future. We can listen to all the various cases but do not have to accept anything as gospel. We are all different and we do not know from one day to the next which pathway we are destined to go along. I know there have been recurrences on the other TN thread and I think one was after eight years. We just have to soldier on.We have to do all that we can to help ourselves in our lifestyles. I am very careful about what I eat, I try to stay active, I try to watch programmes on the television that make me laugh, and, above all, I try to avoid stress. None of this may be of any benefit in the long run, but psychologically I like to think it will help.
Keep posting, Karen and do your best not to worry about things. Be happy.
Sylvia
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Hello TEK2009
I just wanted to say hello and thank you for posting. I am sure everyone on this thread is thinking of you and wishing you all the very best. I hope that the more gentle treatment you have decided on will help. All of us here will give you all the support we can and please let us know how you get on.Best wishes
Sylvia0 -
Hi Sylvia
Thanks for your post and you are right - no point worrying. Easy to say sometimes but I think that worrying will just rob us of the good times that we have in the here and now. I guess we all have a 'new reality' but I think the key to deal with uncertainty about the future is to get the most out of each day. I felt a bit low today (probably after writing my last post!) so I went for a walk in the woods nearby and it always clears my head. I then went shopping for the groceries and just happened to bump in to a friend who I haven't seen for 15 years. We went for a coffee and exchanged telephone numbers etc. So, it turned out to be a really good day. There are blessings all around us if we open our eyes to see them.
This discusison board is a blessing too because I know that whoever reads this - whatever your situation, you understand the fear that can sometimes overtake us. It's good not to feel alone. I also know that if this disease ever does rear it's ugly head - for any one of us - we will still be there for one another - just like we are there for TEK2009, Josephine and all our other sisters on here who have suffered recurrence.
Best wishes to you all
Karen.
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Tek-please look over to the stage 1V board and join us there, where you will get a lot of advice and constructive, up to date information. Even if we can't suggest any alternative treatment, we know exactly how you are feeling, and the devstation which a stage 1V diagnosis brings. As you can see, I'm also in the U.K-and although protocols may be different at times, the benefits you can get from joining us could be considerable.
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I like reading all your posts because they are so informative. I a wondering if I am the one you are talking about with a recurrence after 8 years. If it is me, there is a misunderstanding that I want to clarify, if it is not me then please ignore this:) I had a new primary after 8 years of being cancer free from triple negative, and am again triple negative. It is now in my opposite breast and I had 2 opinions that it was not a recurrence, but rather a new cancer, even though it was very similiar to the first one. Sorry for any confusion and sorry to butt in if it is not me that you are talking about. Thank you for all the informative posts!
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Hello Everybody and thank you for your posts.
Hello KarenThank you for your posting. Thank you for sharing your thoughts about the new reality of our lives after a diagnosis of TNBC. You are right that worrying will not do any of us any good, but worry is always lurking somewhere within us, no matter how hard we try to hide it. I have learnt to relax more of late, because I feel that stress somehow played a great part in my ending up with TNBC. I can understand your feeling low, I think we can all understand that feeling. I was glad to know that you went for a walk in the woods, as that must have been very therapeutic. I like to do that in the grounds of the apartment block where I live and I find that looking at all the shrubs and flowers lifts me out of myself.
What a surprise to bump into a friend whom you had not seen for fifteen years! That must have made your day. It is so important to be able to have people with whom to talk.
You are right in saying that all of us on this thread can share the fears and anxieties expressed. A person that has not been diagnosed with cancer cannot begin to understand the way it changes your life. There is the world before and the world afterwards. We must not forget our families and friends and the stress that they go through watching us go through this awful disease.
I think that at the moment all our thoughts are focused on TEK2009 and Josephine. We must support them and help as much as we can as they deal with recurrence.
Thank you so much ElaineD for your post and for inviting TEK2009 to look at the Stage IV board.
You are very welcome to keep posting here, because we can all learn from your experiences. Everyone here wishes you the very best and hopes that all will go well with your treatment. It must have been so difficult to be diagnosed with a recurrence after being cancer-free for 12 years.
I was interested to know that you live in Devon, as I have lived here for ten years. Are you anywhere near Exmouth?
Hello bkj66
Thank you for your post and thank you for finding the posts informative. You may be the one I mentioned and, if so, I am sorry if I got confused. I think the post was on Titan's Calling all TNS. I would like to congratulate you on staying cancer-free for eight years and say I am sorry that you have had a new primary. I sincerely hope that all goes well for you. You said the new primary was again triple negative, so are you having the same treatment as before? I have noticed from my reading that the chemo is basically the same, but sometimes with others added and sometimes changing the order in which they are used. I have seen that with the taxanes (paclitaxel-Taxol, docetaxel-Taxotere), they are now adding cistplatin (I think the brand name is Carboplatin). Sometimes they are using the taxanes first before other chemotherapy drugs.
I think you were very wise to get two opinions. I think that is something that we should all bear in mind when we get diagnosed, because doctors are only human and they can make mistakes. Please let us know how you get on.
I was wondering how you are getting on Eskimo3 and how you are coping with your chemotherapy. I was also wondering how you are getting on Chilimac and how your two sisters are.
Best wishes
Sylvia0 -
Hi all I just wanted to let you know how much I appreciate your thoughts and comments and I think to say that there is one thing I have learnt is that we often know as much as our specialists, I for one feel like what I have learnt on these forums enables me to recommend my own treatment back to the onc, after all as I think someone said it is our bodies and who knows these better than us.
ATB
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Hi again,
First time I got ac then taxol every 3 weeks. My doc said I can have more ac, but he is doing a 24 hour drip which is suppose to be easier on the heart, and I get a muga scan before each treatement which is every two weeks, After that I will be getting either taxol or abraxane plus carbo, weekly for 12 weeks. My first go around I had a reaction to taxol and they had to give me so much benedryl to get me through the treatment, so I kinda want to try the abraxane, as some say they do not have a reaction with it.
I did ask my doc about the taxol first, after I already had 2 ac, and he said the studies are not complete yet, although I have read very good results with having taxol first, so I just don't know. My doc goes to many conferences and has studied at MD anderson, so I do trust his opinion, but there are so many different opinions it is hard to know which one is best!
Sylvia, don't be sorry, I am hoping it was me that you were thinking about because I don't want to think a triple neg can recur after 8 years, it is kinda our positive thing we have! I wish my doctors and I would have been a bit more proactive back then, like my doctor is now, as I tested positive for brca 1 and would have had a bmx back then if I had done the genetic testing. I know I could still have had a new primary as they don't get all the tissue, but my odds would have been much better not to have a new primary!
I hope you don't mind me posting here as I am from the US, but you all put such good info out there:)
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Amazingly, Sylvia.......I'm in Newton Poppleford!
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Hello TEK2009
I just wanted to say that I think you are right in saying that we, the patients, are becoming very informed and that we are probably becoming as informed as our specialists, especially in knowing our own bodies. Through this forum and the many threads on it, we are obtaining a wealth of information and experiences. Unless our specialists have experienced cancer and have had the orthodox treatment, they are in the dark about what we really experience. My GP often now refers to the internet and says have a look on it when I see her for whatever reason.Have you decided what treatment you will have?
If you have the energy to read, I think that you would find two books, published this year, very interesting. They are both by Xandria Williams and the first one is Vital Signs for Cancer and the second one Cancer Concerns. She belongs to a group of doctors who are known as CAM doctors and they believe that a tumour is the end product of many years along a pathway that started with normal cells going wrong, and that blood tests can detect this in the very early stages, before a tumour is formed, and, by doing various things, perhaps stop the changing cells from progressing to a tumour. I am giving a very simplistic interpretation. It is too late for women like us to prevent the cancer, because we have had it, but she believes that, by following the advice in the book, with the help of a CAM practitioner, we can stop recurrence and spread. They appear to deal with recurrence and spread as well. It could be that such a doctor might be able to help you. I am not saying this to give you false hopes, but I am doing it because this thread is about putting out all the information that we can find. Reading this book has made me determined to try to follow the advice and prevent my own possible recurrence or spread. There is a case, in one of the books, of someone living many years after being told there was nothing to be done. It is worth reading the books because there is so much interesting information in them. Of course, it is up to the individual whether to believe that information or not.
If anyone else is reading these two books, it would be interesting to exchange views. The first book about risk factors and pre-disposing factors is very interesting.
The more I read and learn about cancer, the more I think that the future lies more in prevention than in cure.
Hello bkj66
Thank you for your post. I was comparing your treatment the first time to my own. I was given epirubicin (must be similar to doxorubicin), with cyclophosphomide every three weeks for three months. I lost my hair but the only other side effect I had was fatigue. I then had three months of docetaxel (Taxotere) every three weeks, nothing else with it. Things have moved on since then and I think they are trying out different combinations. With the docetaxel I lost my eyebrows and eyelashes and some of my toenails turned brown. I had a really good woman oncologist and I know that she gave very careful thought about what drugs to use. I had a very long interview with her before she decided on the drugs. She knew that I had been very hesitant about treatment, because I did not like the idea of my nearly sixty-three year old body (until then) being filled with toxic poison. I asked her why she had chosen docetaxel, rather than paclitaxel, and she said it was because it was less harmful to the heart. I did have ECGs before and after treatment and everything was OK. That might give you food for thought about which drug to have.
Sometimes it is very confusing on the various threads when mentioning drugs, because sometimes people are using the chemical names and sometimes the brand names. It is more confusing because sometimes the brand names are different in the US to the UK.
I do like to learn new things every day on the threads and today from you I have learned about a muga scan, which I did not know about yesterday.
I do not know anything about Abraxane (chemical name bevacisumab) and Carboplatin. I do seem to remember reading that good results have been reported using the Taxanes (docetaxel and paclitaxel) plus Carboplatin. It is difficult to know which combinations are best, because I suppose all our specialists will have their own preferences.
I agree with you that it is probably better to have a new primary TNBC than recurrence or metastases. Everything we read says that it is easier to treat primary breast cancer than secondary.
You are very welcome to post here. Whatever country we come from we all have the same disease and we have to support one another. Every woman with TNBC has a valuable contribution to make on these threads.
Hello ElaineD. What a small world it is. Are you going to the RD&E Wonford? It could be that we have been at the same clinics. I know when I was diagnosed with TNBC in 2005, I appeared to be a lone case of TN. Everyone I spoke to seemed to have hormonal BC and were HER2-. In my immediate neighbourhood I know five of us that have been diagnosed, mostly in the past five years, and they are all ER+/PR+ and HER2-. Four of them have had just surgery and radiotherapy. One of them started chemo but had to stop. I felt so isolated when they all went on Tamoxifen and there was nothing for me. However, I did take oral Iscador for the first four years through the Bristol Homoeopathic Hospital. I know, now, that Iscador is used in Germany in cancer treatment. It is an immune booster. Please let us know how you are doing. Do you ever go to Force at the RD&E?
All the very best to all of you.
Sylvia0 -
I have been reading through some of the threads, books etc. and wondering whether some women, especially newly diagnosed ones, are finding all the different drugs mentioned a bit overwhelming and confusing. I thought it would be useful if we could get them sorted out on this thread to help patients.
With TNBC, when you are newly diagnosed, you will be told of the three basic tools for treatment. They are a combination of surgery, chemo and radiotherapy. It is with the chemo treatment that the list of drugs start to grow. Unless there have been big changes since my own diagnosis, I think, especially in the UK, that the treatment remains much the same. The drugs are as follows. Others are now being added to this.
Chemical name Brand name
doxorubicin Adriamicin
epirubicin Ellencecyclophosphomide Cytoxan
docetaxel (Taxanes) Taxotere
paclitaxel (Taxanes) Taxolcisplatin Platinol
carboplatin ParaplatinThere are other names of drugs that keep appearing, but I am not sure when they are used for TNBC or indeed for other breast cancers.
We all know that the real challenge in the treatment of breast cancer is often not with primary cancers, which often respond well to chemotherapy treatment, but with metastases (spread to other organs), or recurrence.
These are names of some of the drugs that keep appearing.
capecitabine Xeloda
This is an anti-metabolite drug. It stops cells making and repairing DNA, which stops cancer cells reproducing. Xeloda changes capecitabine to fluorouracil in the body, if I have understood correctly.zolendronic acid Zometa
This is a bone targetted therapy for patients with bone metastases.
It is being used for breast, lung, renal and prostate cancer.
It belongs to the group of drugs known as bisphosphonates.bevacizumab Avastin
This is a drug that is used for various cancers, including breast cancers. It is a drug that is used to stop angiogenesis, that is the formation of new blood vessels, that cancer cells need to reproduce themselves. I think it is used for lung metastases.ixabepilone Ixempra
This drug is used for advanced breast cancer. It acts in a similar way to the taxanes, but is said to be more effective and to have fewer side effects.I hope this list will be of some help.
Two drugs often mentioned to deal with the side effects of chemotherapy are Neulasta and Neupogena. These are used to fight infection and build up white blood cells.
If you are wondering, from one of the postings, what a muga scan is, it is used to monitor heart problems.
EPO is a blood boosting drug. EPO = erythropoietien = a hormone that boosts red blood cell production.
If there are other drug names or terms that you do not understand, please ask as we can all sort them out together.
We all know that we have to be vigilant when looking things up on the internet. Apparently, the best sources seem to be breastcancer.org or cancer.org. There are good research papers on the internet, if we have the patience to look for them.
That is about all for now. We are all thinking of those going through all the various stages of treatment, dealing with recurrence and metastases, or living healthily, but with the ever present thought of something happening to change the clear pathway.
Sylvia
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That is helpful Sylvia. I know in the US many people have adriamycin and cytoxan followed by taxol (AC/T) and in other parts of the world FEC (all at the same time I think) seem a common combination. I'm not sure what they are though!
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Hello Gill
Thank you for your post. It looks as though both in the US and the UK the chemotherapy drug treatment for primary BC is basically the same. I do not know why in some cases the chemotherapy drug fluorouracil is added to the epirubicin and cyclophosphamide (FEC). I think FEC is now being used in the UK for some cases. The combinations are probably used because they work in different ways. My medical book tells me that cyclophosphamide belongs to the group of drugs known as alkylating agents, fluorouracil to the group known as antimetabolites, paclitaxel and docetaxel to the antimitotics, and doxorubicin and epirubicin to the topoisomerase inhibitors.Of course, all these drugs have different side effects.
Hello everybody.
I hope you are all managing your different stages of treatment and that here in the UK you are enjoying some of the fine weather. Please let us know how you are all getting on and also when you have anniversaries of your diagnosis. I would like to say a special hello to Josephine as I think she may be having treatment or results today.
I thought I would start posting some bits of information that I have picked up from my reading of the Xandria Williams's books. This is about early warning signs, the predisposing factors that could be leading you in the direction of degenerative diseases in general and of cancer in particular. She divides her books into preventing cancer and preventing recurrence or spread if you have already had cancer. She believes in getting a test done called the CA profile. She then recommends the following steps.
1. Improve your diet.
2. Correct any nutrient deficiencies.
3. Improve your digestion.
4. Support your liver.
5. Get rid of toxins.
6. Correct your energy production and your sugar metabolism.
7. Balance your neurotransmitters. Reduce your stress levels and give your adrenal glands a chance.
8. Correct any other predisposing factors.
9. Reduce your risk factors.
These are just the basic steps and she goes on to expand them in the various chapters of her first book, Vital Signs for Cancer.
What I have picked up from the above steps is that stress appears to be a big factor in the development of cancer. It is stated that it is generally recognised that cancer becomes apparent two to three years after periods of extreme stress. It is important to learn to relax, to laugh and have fun, and try not to worry. I know this is difficult with a diagnosis of BC, but we somehow have to learn to do it or deal with stress that is unavoidable as best we can. It also states that exhausted adrenal glands are a prime cause of several problems that generate triggers which convert healthy cells into cancer cells.
I got the message loud and clear from my reading that in dealing with cancer, whatever stage you are at, you should eliminate all sugars from your diet. It appears that sugar feeds cancer cells.
Among predisposing factors are stated an under-active thyroid gland, an under-functioning immune system and faulty oestrogen metabolism.
I must point out that I am just giving a basic idea about some of the things that I have been reading. They are there for you to read and to form your own opinions. We can discuss anything you like about this information. This thread is all about exchanging ideas, experiences and supporting one another.
Best wishes to all of you.
Sylvia.
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Hi all thought I would let you know I decided that provided I could further reduce the dose that I would give the Xeloda a shot, so started 5 days ago, so far quality of life is still good am tired and have a little HFS (hands and feet syndrome) but it is still early days. The bad news is my rash has definitely thickened in last couple of days, maybe the chemo pills not working yet. By the way in case anyone else is unlucky enough to get mets and bad prognosis the Xeloda drug is at least in pill form and not IV which I have to say is extremely helpful since my veins are kaput from chemo etc last time round.
Anyway fingers crossed I am one of the lucky ones for whom this works.
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Fingers crossed for you TEK2009.
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Hello Everyone and a special hello to TEK2009
I am sure we are all glad to hear from TEK2009 and to know that she started her treatment five days ago. All our thoughts are with you and hoping everything will be fine.I am so glad to know that your quality of life is still good, because that is very important. I think we can all understand the tiredness and that we would all advise you to get as much bed rest as you can, so that you give your immune system a rest and a chance to fight this disease.
Would any of you reading this thread and taking Xeloda (capecitabine) please post and give any advice that you can of your own personal experiences with this drug. If the drug has given you problems with your hands and feet, please let us know. If you have had a rash and been put on Xeloda, please let us know if you have had thickening within days of taking it.
Thank you TEK2009 for letting everyone know that Xeloda is an oral chemotherapy drug, because we all know the problem with intravenous chemotherapy and the toll it takes on our veins. I remember the difficulties that my chemo nurses had finding a vein, not to mention the district nurse who came to my home to take blood samples the day before each chemo session. I know you have a port installed for IV, but I had problems with that.
We are keeping our fingers crossed that this drug will work for you.
All the very best from all of us on this thread.
Sylvia
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Hello again everybody
There is a lot of information on the internet about the drug Xeloda (capecitabine). If you Google Xeloda you will find a whole load of information, especially about all the side effects. This drug is often used in combination with Taxotere (docetaxel) to treat metastatic breast cancer. What I find very interesting about this drug is that, although it is an oral drug, it is converted in the body into 5-fluorouracil, which is an intravenous chemotherapy drug of the antimetabolite group. It has some of the same side effects as cyclophosphamide of the alkylating chemotherapy drug group.
From my viewing of Calling All TNS, I can see that there are women on there taking Xeloda.Sylvia
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I thought you might be interested in this very recent article
Sylvia.
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Hello again everybody
I am trying to keep up to date with everything about TNBC, so I have been very interested in the latest news about this breast cancer. Apparently 15 genes have been identified in the development of TNBC. I have also found out that TNBC is now being divided into six distinct types. I shall try to find out what these are. All this apparently brings hope for the development of targeted treatment. The reference for this information is as follows.http://www.bionews.org.uk/page_95760.asp
Best wishes
Sylvia
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I posted this on a new thread and didn't get any responses, but wondering if any of you know what this means. I will ask my doc on thursday, but I can't stop wondering if this means I have basal cell bc? This is what part of my path report said:
part a fails to show intact basal layers around expansile areas of atypical epithelium, supporting a diagnosis of invasive carcinoma. Part b shows similiar cytology but with intact basal cells demonstrated by caponin and myosin immunostains that support a diagnosis of DCIS over invsive carcinoma.
Does this mean I have basal cell bc or is this something totally different? I will ask my doc at my appointment on Thurs, but I kinda overlooked this part of my path report before I knew anything about basal cell.
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Hello bkj66,
I have just read your post and think it might be too difficult for us on this thread to interpret.It would probably be prudent to let your doctor explain it to you.
All I can say is that a lot of triple negative breast cancers are apparently basal but not all of them are. The treatment is the same. A mixture of chemo, surgery and radiotherapy.
The way this reads to me is that part of the breast looks like IDC and the other part looks like DCIS.
Only your doctor can explain this properly.
Good luck on Thursday and please let us know the explanation. This thread is a learning curve.
Sylvia.
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Thank you, path reports are too hard to read ourselves! Somehow I missed this part when first diagnosed, so I will ask him on Thursday. And yes, I do have dcis and invasive, but this sounds like the dcis covers up some more invasive, but that spot was small, like 7 mm compared to about 2 cm of the invasive part.
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Josephine here
Agree with comments from Sylvia, interestingly some (SEVERAL) TNBC are more basal in nature. This means that they express proteins more commonly associated with outher (non breast ) tumours, However as Sylvia poointed out there is a wide degree of overlap with TNBC BC like versus TNBC BC negative and at this stage there is no obvious benefit in different treatment, My advice is to ask lots of questions, reads lots, and question whether your TNBC is EGFR or/or ANR (androgen receptor positive)............Remember they are the experts,,,,,,,,,,,,,,,,,,,,,
meanwhile my friends I ahd CT scan today post x 6 doocetaxol + avastin. I have ( hopefully )
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Thank you, I don't even know what EGFR or ANR is? Can someone please explain? Does it affect treatment plans? It does not seem ot be on my core biopsy path report, adn I am doing neoadjuvent chemo, so that is the only path report I have. Boy, 2 months into this and I keep finding more questions for my doc! You would think they would explain all of this initialy, although i really like my doc.
Josephine-sending positive thoughts for your ct scan!
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I'm not in the UK, but wanted to mention that EGFR (Epithelial Growth Factor) and ANR (Androgen Receptor) are two things that they can test with your tumor, to see if they are missing these things (I think?). There are more targeted drugs for these types of TN. My doctor is having my pathology tested for these at the moment. I had my surgery at Massachusetts General, and they are one of a few places doing it, so it is easy for her to get it done. It could possibly open up some new treatments.
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Hello Josephine
Thank you for your input. I am sure your information will be of help to bkj66. I was very interested in your mention again of EGFR and ANR. I know that EGFR means epidermal growth factor receptor, but I was wondering why it is so important to know whether your TNBC tumour has this or not. I know, also, that EGFR are receptors that increase glucose up-take by cancer cells, and I know that sugar feeds cancer cells and that we should all be avoiding sugar to help in the prevention of cancer or in recurrence or metastases. If a TNBC tumour has this receptor, does it put it into a sub-type of cancer? As for the ANR (androgen receptor positive), all I know, or think I know, is that it is another receptor that encourages cancerous cells to grow.Do women in the UK now receive copies of their pathology reports, as they appear to do in the US? In 2005/2006 I was just told after my surgery that I had a good pathology report and that there were no visible signs of cancer. The radiotherapy was given after this to mop up any stray cells that might not be visible.
I hope, Josephine, that everything went well with the scan yesterday. Please post to let us know what the results were.
Hello bkj66
Thank you for your post. I do hope we are being of some help to you. I hope you now have a better idea of EGFR and ANR. They are receptors and I think all cancerous tumours have them in one form or another and they encourage tumours to grow. I do not think they would affect treatment in general but, for example, if you have hormonal BC, after treatment you will be put on something like Tamoxifen to discourage oestrogen which would have been fuelling the tumour. If you are HER2+ you will have treatment with Herceptin in addition to chemo to deal with tumour growth.
I was interested to know that you are doing neo-adjuvant chemo, because that is what I did for six months prior to surgery. The experts seem to do this quite a lot now.
Concentrate on your treatment and do not worry too much about the rest. Let us know what chemo drugs you will be having. There seems to be a liking among the medical teams for a combination of cyclophosphamide, fluorouracil, and epirubicin or doxorubicin, followed by the taxanes, either docetaxel or paclitaxel. The drugs known as platins are also being used. Sometimes they appear to use the taxanes first.
I can understand why the doctors do not explain everything at once. Newly-diagnosed patients are frightened, shocked, upset and probably not able to take in too much. Once you recover from the initial shock, then is the time to start becoming informed and asking questions. It is always a good idea to take a notebook and pen and someone with you to your consultations. Like this, you are less likely to miss valuable information. It is very easy for a patient to become distracted and confused, and for their mind to wander.
Please keep all of us informed and keep positive.
Hello Suze35
Thank you for your post and welcome to TNBC UK.
I was wondering whether you can tell us what the targeted drugs are and what receptors they target. Usually the US appears to be more ahead of treatments than the UK.
I am sure your information will be useful to bkj66.
I know that you are having a difficult time and I do sincerely hope that all will go well. Please post as much as you like and share your thoughts, knowledge and feelings with us. We shall all support you. Good luck.
Best wishes
Sylvia.0 -
My pathology report showed positive for 5/6 cytokeratin which I understand is one of the "basal markers." I believe I read that about 70% of triple negative BC are basal phenotype. One thing to always remember - and I learned it here - somewhere - statistics work best with large numbers and we are all individual cases. Of course, I forget this on a regular basis, particularly in those early morning hours when I awaken with anxiety. I've never used distraction so much in my life as an anxiety smoothing technique - but I've become a master of distraction these days.
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Ugh, just lost my post!!
Thank you Sylvia for your well wishes. I am very happy to say my scan was clear, and it looks like I still have a fighting chance at this! I'm not giving up, that's for sure!
Below are two articles regarding EGFR and ANR, albeit a bit out of date. There are more targeted therapies that can be used if the cancer proves to fit either category - no magic bullets, but more options to try. I'm lucky my doctor is progressive enough to investigate this for me.
http://www.medscape.com/viewarticle/730311
http://www.ecancermedicalscience.com/news-insider-news.asp?itemId=543
I'm just starting to read up on this myself, as I find out more information, I will keep you all posted!
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Hi -
I'm a concerned daughter who has been spending the last couple days/wks scanning the boards/internet for my mom following her recurrence.
My mom has MetsTNBC... and she is androgen positive. I saw the discussion here on AR+ so I thought I would chime.
Here is the clinical trial for AR+ MetsBC she was offered (based at Memorial Sloan Kettering, but at a few other sites):
***** I can't add links**** what is the trick???
I will type study name:
A Phase II study of Bicalutamide for the treatment of Androgen + , ER- & PR- metastatic breast cancer.
This study is small - 28 people of which 17 people have tried bicalutamide (an approved drug for prostate cancer) - and the success is mixed. I actually just posted more detail on the TNBC foundation.org site today. AR+ is an even smaller subset of TN and my mom happens to be one.
My mom is not the normal TN - she was dx at 62 and recurred at 69 - 6 years out. She was stage III with +nodes. Did A/C and Taxol plus rads. She recurred 8 wks ago - in sternum and there were pinprick areas in lungs. Sternum was biopsied and it was TN. She tried another clinical study for the first 8wks and after scan discovered pinpricks in lungs became multiple areas of concern...bone stayed stable. now the change in treatment.
I would love to link some other sites here that talk about the AR+ for TN... but i need to know the trick (maybe i just need some sleep).
My mom is doing her treatment at the mayo clinic and was very curious on this new study, but the information is limited.
Lastly, on different topic - for TEK2009... over on the TNBCfoundation.org board there is a woman, screen name - zacar - who is very similar to your story with TN recurring as IBC in rash, etc. Hope I'm not out of line sharing that.
What an informative thread - so glad I caught it.
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Hi Sylvia
Thanks for your thoughts. CT scan went well. Resuls show no change from scan three months ago, no new mets etc... and as my onc said there is nothing to treat!! so I am on a chemo holiday (but continue with Avastin and Zometa). The bone mets are harder to assess by CT as sclerotic/fibrotic (basically healing responses show up and cannot be easily distinguished from mets). Brain MRI next month. So good news, and my onc describes it as a very good response.
Re EGFR and AR status; these are not done routinely and have to be requested. Epidermal growth factor receptor is sometimes up regulated on TN BC, and can be viewed like HER2 expression. Androgen (most commonly thought of as male hormone) also found in women, and again some TN BC are AR positive and therefore amenable to treatment with blocking monocloncal antibody against this receptor (IS USED IN PROSTATE CANCER). See thread further down this page. Ditto EGFR, there are mabs (monoclonal antibodies) licenced to block this receptor
keep up the good work
J
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