Calling all triple negative breast cancer patients in the UK
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Dear Sylvia, Karen and others
Just a quickie to say I am stilll here. But was very unwell in January as the urine infection I acquired? turned out to be a very nasty ESPL/ESBL e.coli (one of the new super bugs). Despite antibiotics, it spread to kindneys and when one morning I awoke with rigours, I was admitted (actually got sepsis) so was in hospital for 10 days on IV everything, blood transfrusion, then had my chemo (Avastin + Taxol) but then got massive oral candida (down to lungs) which took a bit of clearing. Lost over a stone and a half during that time only eating fruit salad and yogurt. Appetite better now. Had port sucessfully inserted (did not have it last time and it is more comfortable than the cannula) HAD SECOND CHEMO (EVERY THREE WEEEKS) last Friday. Cough is better, scans due after 3rd cycle. Had Gamma knife procedure in early January whichhopefully zapped the two mets, follow up scans every 3 months. As you know there is a bbb and chemo does not get into the brain, but they do not know how the mets get there in BC, certainly not from the mets present, but other sites. So every three month scan and treatment will be like going to the dentist!! Sylvia not sure where you are based, but did you know that the firist conference on TN BC is on at the Royal Society next month. This is the URL link link http://www.breakthroughconference.org.uk/index.htm
best wishes everyone. TN BC is the largest most rapidly moving area of BC research so we need to be informed!!
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Hello Josephine
I was so glad to hear from you as I have been wondering how you were doing. I was so sorry to hear that you have been very unwell, but glad to know that you are doing better. How awful that you ended up with a new and nasty super bug. I must admit that I had not heard of the variation of e.coli that you mentioned, but I shall be looking it up. There is so much that we can learn from one another by reading and posting. I am so glad to know that you have recovered from your stay in hospital and everything that you went through in order to get you back to better health. It is very good news that you obtained Avastin and Taxol. I was sorry to learn that you then had to fight oral candida. I hope you are managing to put back some of the weight that you lost.I shall be thinking of you as you go through your chemotherapy. Do you know how many doses you will need to have? I am glad that you are comfortable with the port, as it will help with the problem of finding veins in the hands. I am glad to know that your cough is better, as coughs can be very wearing at the best of times.
I must admit that I had never heard of a Gamma knife procedure. What exactly happens with this procedure? I hope you will have good news when you have your scans. I suppose you will be having all the scans available.
I was wondering whether you could explain bbb, as I do not know what this means. I did not realise that when you have chemotherapy it does not get into the brain. I thought that it went to every nook and cranny in the body. I know there is always mention of "chemo brain" or "chemo fog" when going through chemotherapy. I did not experience it, but many women appear to suffer from it. With regard to metastases in the body, I thought that cancer cells could travel anywhere and at any time. That is the frightening thing about cancer. You can never really say you are cured. Cells can lie dormant for years and then suddenly become active. I have read quite a few times that with TNBC there is a predilection for spread to the brain. Is this not your information? Does it not make sense that if you have breast cancer, that becomes metastatic, and it spreads to places such as the lungs and liver, could it not equally go to the brain? Of course, the experts always know the difference between cancer tumours that have spread, and those that are new primaries. I have often wondered how they know the difference between primary and secondary tumours. Can you explain any of this to all of us? If cancer is discovered that has not come from an existing mets, would that not make it a primary cancer?
Thank you for the information about TNBC that is on at the Royal Society in March. I would love to go but am living in Devon and do not think I shall be able to arrange it. I live in the seaside town of Exmouth, about twelve miles from Exeter, and I have had all my treatment at the Royal Devon and Exeter hospital. I am going to look up the link later on today.
I regularly look at the Calling all TNBCs, but have not posted in ages, because I feel that it is largely American women posting there and they have formed a social club as well. It would be lovely to do that here, but I think we are all much more reserved, and of course we are dealing with a different health system. Josephine, I read your postings with interest on that thread.
Please look after your self, try to get plenty of rest, eat as well as you can, and keep us up to date with your progress. I am sure that everybody on this thread has you in their thoughts and are wishing you all the very best. Keep strong and positive.
Sylvia
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My day has not turned out quite as I expected, as I got into researching certain things on the internet, as a result of reading Josephine's posting. I thought I would post a few references, so that those of you who are interested can look at them and voice your opinions.
Cyberknife
http://www.dailymail.co.uk/health/article-1249016/Saved-2m-CyberKnife--coming-NHS.html
http://en.wikipedia.org/wiki/Cyberknife
Gamma knife
http://en.wikipedia.org/wiki/Gamma_knife
Adjuvant Anthracyclines (epirubicin, doxorubicin) - Research about their use in the future.
http://www.cancernetwork.com/display/article/10165/1795372
Can We Abandon Anthracyclines for Early Breast Cancer Patients?http://www.cancernetwork.com/diplay/article/10165/1795429
Blood-brain barrier BBB
This is a very interesting article.
http://en.wikipedia.org/wiki/Blood-brain_barrier
Triple-Negative Breast Cancer - William D. Foulkes et al
http://www.nejm.org/doi/full/10.1056/NEJMra1001389
Unless you subscribe, you can get only the first page.
Triple Negative Breast Cancer Conference 2011 - The Royal Society, London, 9 - 11 March 2011
This looks as though it will be most interesting. Let us hope we shall have some feedback on the internet.
http://www.breakthroughconference.org.uk/programme.htm
That is all for now. I hope to get some feedback.
I was wondering if anyone viewing this thread was local to Devon. I would love to hear from you.
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Sylvia
Lots of questions, but I can see by your second posting that you have been researching the answers anyway. The bbb is the blood brain barrier and protects the brain from substances in the blood, only a few chemo drugs can diffuse across. This URL summarises some information
This is not to say that chemo can diffuse across as I certainly had chemo brain, but if they wish to treat brain tunours with chemo they use special devices and it depends on the type of brain tumour.
I do not know how many cycles of chemo I shall have, I guess it depends on response? I hope remission is high up on the list!!
With respect to your question about primary cancer, that represents the tumour mass from the orginal mutated cell. Once these have metatasized, they leave the primary tumour via the lymphatics or blood and 'seed' out or hide away, until they start to grow into a tumour. This is called a secondary (as in my lung CA (carcinoma) as it orginated from the orginal BC (based on histology and protein expression, my TNBC is basal in nature and the lung CA was similar). They checked this out first to confirm it was BC spread and not a new lung primary. ER+ versus TNBC tend to go to different places with ER+ to liver and bone (more) and TNBC to lung and brain. Once I had the lung CA noted, is why I had the brain MRI and guess what? two small mets!!. The surgeon who treated me with the gamma knife procedure made it clear that it would (hopefully) zap those mets, but would not prevent more mets in the future from wandering on in!! Therefore I have to have 3-month MRI follow ups. The procedure is non-invasive although not without discomfort, but compared with whole brain radiation! there is no comparison. I hope to go to the TNBC conference and will report back on interesting findings. The proceedings will be published I am sure, but it will be useful to hear what is up and coming for TNBC here in the UK. Some of the speakers are also from the US. By the way I am a scientist (in another field) so hoepfully I will be able to translate the findings, but with the need to be cautious as therapies availble are often some time off, although I am impressed with the rapidty of movement in the iPARP field
All for now
Josephine
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Sylvia (and others) - you are all very welcome to post regularly on the calling all TNs thread. I am a Brit living in the US and look at your thread every now and then. The TN thread is not exclusive and you really would be welcome. It is no different posting from the UK than anywhere else in the US - most of us will never meet in person.I read about the difference in scans in the UK. I have to tell you that over here, oncs fall into 2 categories - regular scans or scans only when symptoms present. I have not had any scans since completing tx in December 2009. My oncologist will order a scan only if there is an area of concern. The reason for this is that the time difference makes no difference to the outcome of treatment. I see my oncologist every three months and have a mammo every 6 months at the moment. Good luck to you all - and I hope to see you on the other TN thread. I'm also posting on the ten pounds take off TN thread
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Hello Josephine,
Thank you for your posting.Thank you for your information about the special devices that are used for brain tumours and letting us know that this depends on the type of brain tumour. I think it pays for all of us to have as much information as we can, even if some of it is frightening.
I do hope that you will not have to have too many cycles of chemo and that you will go into remission as quickly as possible.
I do understand everything you said about the different places in the body that TNBC and hormonal breast cancer tend to metastasise to. What puzzles me is where the two mets in your brain spread from if not from the original breast cancer. Logically, you would think that there must be a primary tumour somewhere else. I was interested to learn that you said the lung mets was TN like the original breast cancer. That got me wondering what the brain mets was. Does all this mean that a person can be diagnosed with triple negative carcinoma in other kinds of cancer than breast cancer?
I do hope you make it to the TNBC conference and that you will bring us back lots of information. I did notice that three of the names on the conference programme were the same as I had noticed yesterday while researching on the internet. One of them was Foulkes.
I understand that we have to be cautious about findings that are published, because, as you say, they are sometimes years away. However, I do agree that the PARP inhibitors do seem to be developing very quickly and in this country we are always up against the lack of money in the NHS and NICE.
I was ashamed to read yesterday that, for many things, concerning cancer, we are a third world country. This was in reference to the Gamma knife, for which we are behind Vietnam and Turkey!
Since I regularly look at Calling all TNBCs, I read your postings there with great interest and found it useful to learn that lung mets treatment is using Avastin and Taxol, and that Zometa is being used for bone mets.
Finally, by researching, I was able to find out that not all the experts have pessimistic views about TNBCs. I was interested in a paper I was reading about busting the myths about TNBC. In that paper it was stated that a poor prognosis was a myth. It was also stated that it was a myth that TNBC could be treated only through chemo. The third myth was about the association between TNBC, BRCA1 deficient BC and the basal molecular sub-type. It was stating that it is not true that most TNBCs are associated with BRCA1 or BRCA2 deficiencies. There is so much information circulating that it is difficult what to believe. I think that, perhaps, a lot of the poor prognosis statements come from the fact that there is no equivalent of Tamoxifen etc. for TNBCs to prevent recurrence.
That is all for now. I am glad you feel well enough now, Josephine,to be thinking of going to the conference. Are you back at work and do you live in London?
Sylvia
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Hello Gill
Thank you for posting.I do regularly look at the Calling all TNs thread and I have noticed your name there. In the past I did quite a few postings there, so the details of my BC are there. I have not posted in quite a while but I am completely up to date on my viewings.
It is nice to hear from a Brit living in the US. How long have you been living there? I lived in Canada for 17 years from 1977 to 1993, when my husband and I came back to the UK. We found a big difference between medical care in Canada and that here. I have no complaints, however, about my cancer treatment here.
After treatment here, you go on two-yearly mammograms and then, after five years, you go back to every three years, which is the same as for women going through mass screening here and who have never had cancer. I remember having three-monthly check-ups, just a physical check, for a couple of years and then it went to six months. Five years after diagnosis you are usually discharged.
I wish you the very best of luck in losing weight. I do remember reading about the idea on the Calling all TNs. I am sure it must help being part of a team.
I have just passed five and a half years since diagnosis and this should be of great encouragement to everybody out there, as I had a very large tumour.
Best wishes from the old country.
Sylvia
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I thought I would post to encourage newly diagnosed patients and those going through treatment. I phoned today to get the result of my recent mammogram and was relieved to know that everything is in order. That will probably be my last one, as I was told I would revert to three-yearly ones if all was fine.
I still count the time since diagnosis and want to give you encouragement and optimism about TNBC. It is now five years, eight months and three days since diagnosis. Since I had one of the largest tumours that I have seen mentioned on this site, but only one node affected, a sentinel node, I hope this will make all of you feel optimistic. Whatever happens, there is always treatment.
Have any of you read about the new 3D mammography equipment? I do not think it is being used anywhere, but I may be wrong.
There is news today about scientists discovering an enzyme, LOXL2 (lysyl oxidase-like 2), which is responsible for metastases in breast cancer. They will now be looking for a way to prevent this enzyme from causing spread. Let us hope this is not years away! It was stated that the LOXL2 gene was important in the early stages of cancer spread and that high levels of the enzyme were linked with cancer spread and poor survival rates, so they used chemicals and antibodies to block the enzyme and stop metastasis.
Best wishes to everyone. Sylvia
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Hello Karen 3,
I have just been reading through some of our postings on Not a Typical Triple Negative and thought I would say a special hello and ask how you are doing.
Sylvia.
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Hi Sylvia
I haven't logged on for a bit - sorry! I am doing fine - I had my first mammogram in January. They found calcifications but think that could be caused by the radiotherapy / treatment. They will monitor it and see if the calcifications become larger on the next mammogram. If they do - they will investigate then.
However, I had an hour long discussion with my breast surgeon. We discussed some of the new research and the poor prognosis of basal triple negative where there has been an 'incomplete pathological response' to chemotherapy treatment. I was diagnosed with Basal, triple negative and my cancer did not respond to E/C or Taxol / Docetaxel so my chemo was withdrawn early on. He thought that I was at greater risk of recurrence because of this. I also have a BRCA 1 mutation of 'unknown significance' and a cluster of BRCA 1 type cancers in my family. So my breast surgeon is recommending that I have a breast MRI alongside my annual mammogram (which I am very happy with) BUT he has also asked me to consider mastectomy and removal of my ovaries. I am waiting to see the Oncologist at the moment so will discuss all this further with them. I am also fortunate that my Oncologist is a genetics specialist.
Part of me just wants to put all of this behind me and get on with my life. I am a teacher and have lots of additional responsibilities which mean I work very long hours. I keep trying to push BC to the back of my thoughts but in truth it's very difficult. My colleagues at work comment on how well I look and how good it is that I am now 'cured'. That really frustrates me!
Hope you are doing well Sylvia XX
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Hello Karen 3,
Thank you for your latest post. I was very glad to hear from you and to know that you are doing fine. I hope that everything will be fine with the calcifications that they found on your mammogram. We always learn something on this forum. I did not know that radiotherapy could cause calcifications in the breast.I was interested in the discussion that you had with your breast surgeon about the poor prognosis where there has been an 'incomplete pathological response' to chemotherapy treatment for basal triple negative cancer. I had a very large tumour when diagnosed, I had more or less the same neoadjuvant chemotherapy as you, three months of combined epirubicin and cylcophosphomide. I then had three months of Taxotere known as docetaxel. If you had Taxol that is paclitaxel. They both belong to the group of drugs known as taxanes, as you probably know. My tumour did shrink, but the oncologist said it had not shrunk as much as she would have wished. I asked her if I should have more chemotherapy, but she said it was better to give my body a rest and to go for a mastectomy. I had the mastectomy seventeen days after chemotherapy., and after a rest, went on to three weeks of radiotherapy. After surgery, my consultant and oncologist were smiling as they told me all visible cancer had gone from my body. I am not a doctor, but I wonder whether they should have continued with the chemotherapy to see if the tumour had shrunk a bit at the end of treatment. However, regardless of the lack of response to chemotherapy, your surgery was successful and you have not had any recurrence. I am assuming it must be the BRCA1 that is of concern to your breast surgeon.
I think it is wise for you to see your oncologist before you make any decisions. Perhaps there are other treatment options for you to have than surgery. I can only speak for myself, but I know that even if I had been offered the possibility of a lumpectomy, I would have opted for a mastectomy. It made me feel more confident about clearing out everything in the breast. However, I have read recently that there is no difference in survival rates between women who have lumpectomies and those who have mastectomies. Do you have an opinion about this?
I have also read about women who have BRCA1 or have it in the family being advised to have mastectomies and removal of the ovaries. I am sure that your oncologist, being also a geneticist, will give you the best advice. I know how difficult it is to make these decisions. I hope you will be able to make the decision that will give you the most peace of mind.
I can understand how you want to put all of this behind you. You will do this in time and you will get on with your life and just have periods of anxiety before check ups. That is how I live now and I tell myself that whatever lies in store for me, I shall think very carefully about everything, and then do whatever I think is the best for me. When I was first diagnosed I went into complete shock and for a very long time could not get the "I have cancer", out of my head.
I get the impression that you are being offered excellent care. With annual mammograms and MRI scans they will be able to keep a careful eye on you.
Having been a teacher and taught French to 11 - 18 year-olds, as well as English as a second language to the same age group, I understand the stress of being a teacher. I hope you have had a good week's holiday for half term and that you are ready to go back to school. Just ignore comments about looking well and being cured. Unless you have been through cancer, you cannot understand the life of those that have been through it. Just look after yourself. All of us here wish you the very best.
All is well with me.
Sylvia. XXX
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Hello to all of you! I'm new to this and just want to "touch base" and make friends with ladies with the same condition - not met anyone so far, they seem to be all hormone receptive breast cancer girls. I wondered if of you triple negative ladies (and men?) have heard much about not eating dairy food (Prof. Jane Plant says it's really not good!). I fully understand all the scientific evidence I've read, and I am now (after a nasty recurrance)eating very healthily and not eating dairy, but her book doesn't mention trip negative, only those cancers "recetive to hormones". When I research it, the doctors all say "eat healthily, excercise, try not to drink too much booze and watch your calorie" but no medical doc actually will stick their neck out and say "look, just try anything!" Any views?
Oh, I was dignosed with Triple neg., inflammatory BC in July 2009 (age 45). 5cm Tumor in Right breast. No lymph involvement. Started FEC-T in August 2009. Didn't seem to be working after 3 cyces so I had a double mastectomy (left side prophylactic) in October 2009. Finished chemo (the T bit) after recovered from op. Then had radiotherapy in February (20 sessions - for "belt and braces"). Triple neg returned in skin on chest in April/May 2010 and spread very, very rapidly - but only in skin. Had more chemotherapy (GemCarb). Finished just before Xmas! Still clear on skin at moment - phew! Oh, I also pushed for BRCA screening and am negative. At the moment, I really, really feel the fittest I have for a few years surprisingly!
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Hello PenelopeP
I would like to welcome you to our thread and say that we shall all try to help and advise you.
I do understand what you mean about finding it difficult to have contact with women with triple negative breast cancer. I felt exactly the same in June 2005 when I was diagnosed and the term triple negative cancer was not used. In the block of flats where I live, two other women have been diagnosed with breast cancer, but it was hormonal, and they were both on Tamoxifen after finishing their treatment. I know two other women in the neighbourhood, but they have both been through hormonal breast cancer. I did not meet anybody at the hospital either. I know that you can feel very lonely and isolated. Fortunately, there is much more talk about TNBC now, and I feel that progress is now being made.
I can only give you my own opinion about eating dairy products, and it will be interesting to see what other women on this thread think. I had not been a great dairy eater before breast cancer, and I eliminated it completely from my diet when I was told I had breast cancer. I did this before I read Professor Jane Plant's books about ridding herself of recurrence of hormonal breast cancer by eliminating dairy products. I do not know whether giving up dairy products is useful for keeping TNBC at bay. All I can say is that I have not had a recurrence or spread in more than five and a half years. I remember when I went for my first consultation with my breast surgeon consultant, before I knew that I was TNBC, I asked her unofficially what she thought was the probable cause, or one of the causes, of breast cancer, and she said she thought it was the hormonal growth factor in dairy products. This made a lot of sense to me. Milk is for calves not humans. Recently I tried some French goat's cheese log. It is delicious and I thought it might help with calcium in my diet. However, I felt concerned after eating it, so have decided not to touch it any more. Some people think it is alright to eat the dairy from smaller animals, but I am not convinced. I think you are doing the right things by not eating dairy products.
I think it is good advice to eat healthily. In my own case I eat lots of fruit and vegetables, wholemeal bread, some oily and white fish, a little seafood, nuts, seeds, beans and pulses and a little dried fruit. I hope others will post to describe their own diets. I drink fresh enriched soy milk and do not touch any alcohol. I used to drink a little wine, but since diagnosis I have not drunk any alcohol at all. I do not eat any meat or poultry. It is full of hormones. I try to get regular sleep, avoid stress, and keep physically and mentally active.
I was sorry to hear that you had a recurrence, but luckily drugs are now available to deal with this and I hope you will now stay in the clear. You have been through an awful lot and have come through it, so keep looking forward.
Did you have any bad experiences with GemCarb? Does this treatment make you lose your hair? It would be most helpful to know how you got on with this treatment, as it could help others on this thread.
I was glad to hear that you pushed for BRCA screening and that the result was negative. It is not easy on the NHS to push for genetic testing. Do you have any breast cancer in your family?
It is good to know that you now feel the fittest that you have for a few years. Keep up the good work.
That is about it for today. Sylvia.
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HI Sylvia (and others too),
Thanks for the reply - made my day! I shall keep not eating dairy products. Stuff I've read about dairy doesn't sound good even if it isn't a trigger for breast cancer. To answer your queries about Gem Carb: well, it wasn't as bad as FEC-T except the "Gem" chemo really hurt my veins and put them into cramp. This goes as soon as it is flushed out. The side effects were not bad really (unless I was simply getting used to chemo). I managed to play golf throughout the whole treatment (with lots of support from family and friends). Constipation was always a bit issue with me and I've since found that having a couple of tablespoons of ground flax seeds in soy fruit yoghurt is just brill for that (and for omega-3's)- wish I'd read about it much sooner whilst having chemo.
My hair went very, very thin and I looked a bit like Gollum from Lord of the Rings, so I shaved it all off (would rather look like GI Jane!) It all dropped out anyway with FEC-T. It's now growing back for the second time again and is much darker and curlier.
There isn't really breast cancer in my family but there is ovarian cancer. Actually, my NHS didn't want to test for BRCA but my sister approached her NHS system with concerns about me, her and her kids and they actually said they'd would test me (and then her if I was positive). So I actually got it done "on the side" - a very big thanks to them! It is good to know as I have children too and feel more relaxed about not passing a defective gene on. Nice to know I have new friends. Thank you
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Hello Penelope,
Thank you for posting. I do not think you will suffer from not eating dairy products, but make sure you eat the right foods to get some calcium in your diet. Chemotherapy and radiotherapy do take a toll on your bones. As I have said before on this thread, I feel that all women should have a DEXA scan after their BC treatment to see what state their bones are in, in case there are any signs of osteoporosis.
Thank you for your information about gemcitabine and carboplatin. I was glad to know you were able to play golf during your treatment. There are always natural ways to counteract things such as constipation during treatment. I avoided such problems by regularly eating prunes and dried figs. I also have, as part of my diet now, flax seeds and natural plain soy yoghurt. I think the thing to avoid is taking too many other drugs. Everything is so personal, so we have to make personal decisions. I also have omega-3 supplements, as well as the flax seeds.
I am glad to know that your hair is growing back again for the second time. I think that losing one's hair is one of the most upsetting aspects of this cancer treatment. My hair is dark brown and has a natural wave in it, but when it grew back it was black and very curly and grew a bit like an Afro style! It is now completely back to normal. I hope that treatment for breast cancer will come up with something that does not have all the de-humanising aspects caused by the anthracyclines, such as epirubicin (Ellence) and doxorubicin (Adriamycin), and drugs such as cyclophosphamide (Cytoxan). My understanding is that these are now known as the old generation of drugs, so there might be a move away from them. I think the taxane drugs have worked miracles for breast cancer treatment, but they are hard on the body. When I was on docetaxel I lost my eyebrows and eyelashes and some of my toenails went brown. We have to look forward to new generations of drugs that target cancer cells, but do not harm normal cells as the drugs in current use do.
Be proud of yourself for getting genetic testing.
I was wondering if anyone knows whether doctors now speak about triple positive breast cancer, ER+, PR+, HER2+, in the same way as they now speak about triple negative. Most of the women with whom I am acquainted are ER+, PR+, HER2-. I do know someone who is triple positive and having finished the regular treatment is still having injections of Herceptin because of the HER2+ factor.
Does anyone know whether this positive and negative factor exists in other kinds of cancer?
Do men with breast cancer divide into different groups?
I heard on the radio the other day that having an abortion puts a woman at an increased risk of developing breast cancer.
Are there women with no sign of breast cancer taking Tamoxifen as a preventative measure? I wonder about this because how can you know what kind of breast cancer you are going to develop?
Are any of you recently diagnosed having your thyroid, parathyroid or calcium levels checked? I have read that abnormalities in all or any of these may be connected to a higher risk of developing breast cancer. There is so much information that it is hard to know what to believe and what not to believe.
That is all for today. Look forward to having more postings.
Sylvia.
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I just thought I would like to say that I have read over and over an article about TN BC that makes me feel optimistic. It makes heavy reading, but good reading and I feel that anyone feeling in low spirits will benefit from it. I shall quote the reference again.
http://bcwatchdigest-triple.evidencewatch.com/
Read it for yourselves and take heart in what it says about the three myths surrounding TN, about poor prognosis, chemo only treatment, and the BRCA connection. This article tells me that there is no need for all the doom and gloom about triple negative.
On another matter, I was not pleased to read that NICE will not finance the drug Avastin = bevacizumab, the angiogenesis inhibitor. This drug, in combination with paclitaxel, may slow the growth and spread of the cancer beyond five months more than paclitaxel alone. It is used to treat HER2- metastatic breast cancer.
I do not think that NICE should be allowed to behave in this way and I thought that the new coalition government had promised to get rid of NICE.
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I have just been reading a bit of information that I found in the following article. The reference to the article is as follows:-
http://www.cancernetwork.com/conference-reports/mbcc2011/content/article/10165/1817148
I read it quite quickly, but the upshot seems to be that chemotherapy will continue to be the main treatment for this type of breast cancer for some time.
The article appears to make clear that triple negative breast cancer and basal-like cancer are not the same. Back in 2005/6 I could not get a clear answer about whether my TNBC also belonged to the sub-group basal-like. I am sure no analysis was done in this respect on my tumour after surgery. I was just told that it probably was basal-like. I think that in 2011 answers will be more clear-cut than that.
The article also appears to say that basal-like BC is more associated with BRCA1.
I hope you will take the time to read the article.
Sylvia.
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Hello everyone
I was looking on the internet to see if there was any information following the London conference about TNBC (March 9 to March 11). I have not found any articles mentioning the results of that conference, but perhaps it is too soon. On the other thread on breastcancer.org, someone posted a link, saying that the link was information to do with the London conference. I looked up that link and it was the most recent one I posted on here, but it does not appear to be information from the London conference.
While searching for information using Google, I found many links about the London conference, but all of them were outdated, as they were advertising the conference, which, of course, is now over. I found one link that I think will be of interest to you. The reference for that link is:
http://breakthrough.org.uk/media_centre/news_views/conference.html#wrapper
The section of this article that I found most interesting was how a definition of triple negative is arrived at. Triple negative tumours are defined by what they lack and we all know they lack oestrogen, progesterone and HER2. However, it is not as simple as that, because, to further complicate the picture, triple negative breast cancers can be quite different from one another. This suggests there are very many different sub-types and these would need different treatments.
For all of you being newly diagnosed or going through treatment, it would appear to be important to know, if possible, what your sub-type of TN is.
Have a look at the article. It is quite short.
Hello Josephine. If you did make it to the London conference, I am sure we would all be glad to hear what you thought of it and to have any information you may have.
Best wishes to all.
Sylvia
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Hello everyone
I thought I would let you know that TNBC seems, at long last, to be getting a lot of attention. For those of you wishing to be kept informed, I think you would find it interesting to have a look at the following link:-
http://lbbc.org/Events/2011-4-12-TNBC-Medical-Update
With reference to this there are two conferences in April, the first one starting April 12th.
This site Living Beyond Breast Cancer, is very interesting and there is also a library section, which has a lot of downloads. The link for the library is:-
With all these conferences in March and April, we cannot complain that we are being ignored. However, we have to hope that these conferences will lead to new targeted treatments that will be less devastating than the ones we have to go through at the moment. We have to make sure that the NHS provides us with whatever becomes available.
Apparently there was a conference in February about how all metastatic tumours should be biopsied before treatment. This is because, as we know, these tumours can be different to the primary ones and may need different treatment. The words of my own oncologist always sticks in my mind. She said that my triple negative primary tumour did not necessarily start off as such and that it could have mutated from something else.
All for now.
Sylvia
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Hi Sylvia and others
Yes I did make 50% of the conference, but have been so busy at work have not time to organise my thoughts, also have had to have a couple of units of blood (explains my fatigue and breathlessness; thanks to the Royal Society that let me park in the forecourt!!)
But some quick recollections.............
TNBC is complex and heterogenous, and 80% overlap with basal type, although the 'hang up' on pathological distinction is not yet merited by different therapies. A small proportion of TNBC respond very well to chemo, suggest that trial in future are chemo (x1) neoadjuvant, which would distinguish responders from non responders. Many TNBC upregulate genes that confer resistance against anthracycline therapies (possibly other chemo). The PARP story still ongoing, and gloom at last results should not be overinterpreted. However, clear that the Sanofi drug has effects above and beyond the PARP inhibition, and that this drug does have some effect in TNBC (as opposed to the BRAC mutation only where there clearly is benefit). What is not clear is which chemo synergises well with the PARP inhibitor (if that indeed is mechanism of action). As ever, these answers depend on doing the appropriate trials, and getting sponsorship. Drugs already out there are not of interest to Pharma, but they may work well in synergy with some of these new drugs.
My overwhelming thought was that lots of research is on going. That histtology/ pathology does not indicate therapy. That size and node involvement in TNBC not relevant. That a small subset have an excellent response to chemo, and these should be identified..............and other things
sorry it is so rushed. Once I have time, I will paste the all important references to the recent studies and trials that were published.
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Hello everyone,
Below is a useful link for a list of breast cancer drugs:-
http://www.imaginis.com/breast-health/profiles-of-breast-cancer-drugs-5
Sylvia
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Hi ladies,
I do not live in the UK but will be visiting April 3-15 and would very much enjoy meeting one of you, talk and share some life stories. I will be visiting the Worcester area during my stay.
Prayer and well wishes to all of you,
stay healthy
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Hello Brena
Thank you for your post. I do hope that you will have a good stay in England from April 3 to 15. I am assuming that you are coming for a holiday. I do hope that some others viewing this thread will have the courtesy to respond to your post, especially if they are in the Worcester area. I am in Devon, so I shall not be able to meet up with you.
You are most welcome to post your experiences with TNBC on this thread, as the more information we have the better. I was most interested to see that you had taken part in trials. Can you explain what the trials were about. I have no idea what E5103 and S0307 mean.
A lot of the women being diagnosed with TNBC are younger women and certainly pre-menopausal. Are you in the category of younger women?
I have now reached five years and nine months since diagnosis, and have had no problems since I finished all my treatment in 2006.
To everybody out there viewing this thread, I would like to send my best wishes and say that I hope you are all coping with whatever stage of your treatment you are at. We do need more postings, because a thread is supposed to be interactive.
Hello to Jinglebell, FreddieDLH, Spamy61, Micheyd, Karen3, NewAlex, Josephine, Gillyone, PenelopeP and Hymil. Hymil, I know you are not TN but you are still welcome to post.
All for now. Sylvia.
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Hi Sylvia (and all others),
Just wanted to say a big thanks for all the info. I will have a jolly good look at it all. I've been away for a while (holiday and having fun) but just wanted you to know that I am very well but continue to research into our TNBC. Actually, I am very curious about male breast cancer. I will report back if I find anyting interesting. Bye for now,
Pen
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Hi Sylvia,
I will be in Worcester for business with hope to have weekends free to enjoy my stay. I was 45 when diagnosed, no family history. I had yearly mammo's which never found the tumor, i found while taking a shower, the tumor seemed to appear over night. I decided to join a trial or two in hope to help future woman, maybe family members who knows. If I had to go thru the cancer process i might as well make a difference. I am posting a littl info about the two trials that i am involved, they are still open.
E5103; I drew the placebo.
RATIONALE: Drugs used in chemotherapy, such as doxorubicin, cyclophosphamide, and paclitaxel, work in different ways to stop the growth of tumor cells, either by killing the cells or by stopping them from dividing. Monoclonal antibodies, such as bevacizumab, can block tumor growth in different ways. Some block the ability of tumor cells to grow and spread. Others find tumor cells and help kill them or carry tumor-killing substances to them. Bevacizumab may also stop the growth of breast cancer by blocking blood flow to the tumor. Giving chemotherapy together with bevacizumab after surgery may kill any tumor cells that remain after surgery. It is not yet known whether doxorubicin, cyclophosphamide, and paclitaxel are more effective with or without bevacizumab in treating breast cancer.
PURPOSE: This randomized phase III trial is studying doxorubicin, cyclophosphamide, and paclitaxel to see how well they work with or without bevacizumab in treating patients with lymph nsoode-positive or high-risk, lymph node-negative breast cancer.
S0307, I was randomized into taking clodronate and will finish the drug this July.
RATIONALE: Zoledronate, clodronate, or ibandronate may delay or prevent bone metastases in patients with nonmetastatic breast cancer. It is not yet known whether zoledronate is more effective than clodronate or ibandronate in treating breast cancer.
PURPOSE: This randomized phase III trial is studying zoledronate to see how well it works compared to clodronate or ibandronate in treating women who have undergone surgery for stage I, stage II, or stage III breast cancer.
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Sylvia,
Congrats on being cancer free, may you have 20 more.
cheers
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Hello Brena
Thank you for posting. I do hope you manage to enjoy your stay in our country and that your business trip will leave you plenty of free time.Thank you for all your information, which I am sure will be very useful to all of us on this thread. I was very interested to know that your yearly mammograms did not find the tumour and that the tumour seemed to appear overnight. I found the lump in my right breast and I used the exact same words. My tumour seemed to come from nowhere. Moreover, it seemed to appear after I had strained my right arm doing some gardening and trying to cut through a somewhat tough branch. I have heard different women say the same thing about appearing from nowhere, after a fall etc. From what you said, it seems that mammogram screening starts much earlier in the US than in the UK. It usually starts here at about fifty. From what I have been reading on this forum I do think that TNBC does affect younger women more than older ones, but I cannot think why this should be.
You did a very useful thing when you joined a trial. Progress can only be made through trials. I was very interested to read about the monoclonal anti-body bevacizumab and how it deals with cancer cells. Since this drug can kill cancer cells after surgery, would this mean that a person would not need radiotherapy? This would be an excellent step forward. Taking radiotherapy treatment seems easy after chemotherapy treatment, but it does have nasty side effects and I do wonder whether the radiation causes cancer anywhere in the body years later.
I was most interested in your trial using bisphosphonates. How long have you been taking clodronate? Have you had any bad side effects? I ask this because my breast surgeon consultant and another doctor that I saw during my treatment, said that bisphosphonates were very nasty. I have osteoporosis as a result of my cancer treatment and also because, unknowingly, I had an over-active parathyroid gland, which was cured through surgery. The problem with the parathyroid was only discovered when I was diagnosed with breast cancer. To cut a long story short, I was offered bisphosphonates for my osteoporosis, but I have refused to take them. I was offered zoledronate.
That is about all for now. Wishing you all the very best.
Sylvia
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Hello Penelope
It was so nice to hear from you as I have been wondering how you have been getting on. It was a good idea to get away on holiday and have some fun. I was so glad to know that you are very well. Keep it up. I think that it is good for all of us to keep our eyes open for any information about TNBC, while at the same time, getting on with a normal life and not letting TNBC take control of us. None of us, unfortunately, can ever take anything for granted.I understand your interest in male breast cancer and I shall look forward to any information you may find appearing on our thread. These solid cancers must be connected in some way. So many of our cancers are connected to our hormones. It would be interesting to find out whether male breast cancer divides up into hormonal and non-hormonal as it does in female breast cancer. I wonder why there is not so much breast cancer in men.
That is all for now. Wishing you all the very best.
Sylvia
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Hello everyone
I was just reading some of the posts on one of the other TN threads and was most interested in an article posted there that comes from the Breast Cancer Site. It is well worth reading. It is all about a claim of a possible discovery of a major cause of TNBC. It is a bit complicated to explain, but as I understand it, it states that the improper activation of three tyrosine kinases could be the major cause of TNBC. Tyrosine phosphatase PTPN12 is knocked out in 60% of nearly 200 cases of TNBC. This is a class of enzyme that keeps cancer at bay. The three enzymes are EGFR, HER2 and PDGFR-B. One drug, laptanib (Tykerb), turns off EGFR and HER2. The other drug, sunitinib (Sutent), turns off PDGFR-B.Apparently, these drugs are already approved by the FDA in the US. Nevertheless trials will be started in 2012 for use in TNBC. I do not know whether they are in use in the UK.
Do not be put off by the doom and gloom of the first part of this article. With breast cancer of any kind, and with cancer in general, all you can do is take it one day at a time. No one really knows for sure how long a person will survive.
All for now.
Sylvia.
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