Calling all triple negative breast cancer patients in the UK
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Hi Sylvia
quick answers to previously asked Q's Sure bone scans more accurate, but currently I think I would set off every Geiger counter at Imperial College (where I work) with the limited but required scans I have had. If you have bone mets, you are never absolutlely free of whether there are repair lesions, so the relevant comparisons are previous scans, anlaylsed by same consultant. Zometa and Taxol will also cause inflammation......................
also you asked about p53 gene; very important in stopping cells becoming malignant and many tumours (>50%) in BC have a p53 mutation (leading to inappropriate control of cell division). However, there are yet no targetted therapies against up regulating this pathway. The future I believe will be in identifying a unique signalling pathway associated with TNBC or an upregulation in a uniques protein that could be targetted by antibody directed therapy. The future is the latter. Whilst I have survived? chemo, the side effects are continuing and my lovely hand nails have given up (still small price to play). Apologies for random responses, and i HAVE BEEN THINKING ABOUT ibC/IBC my thoughts and prayers with TEK2009
other Q (re checking back)...............
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Thanks Josephine thought you might be interested my onc just told me recently that research seems to now show that the CT scan is as good as bone scan so he did not do bone scan when I said I wanted to know if it has spread further.
Sylvia
I know the Drs talk about that rash but mine is remarkably like the descriptions of IBC, not least the orange peau effect. I cannot help thinking it was IBC to start with but cannot workout how it is shown to be IDC and not IBC, hopefully will find out next week. Also as I read that most IBC is TN (yes not all but I believe a large percentage) it seems even more plausible that mine could be IBC, either that or there is something strange about recurrencies in form of rash as in my case it is almost identical to IBC. Will keep you posted.
Re the treatment so far have done 2 weeks Xeloda low dose and it was on day 13 I started to get worse symptoms (well beyond the general tiredness), fingertips are really sore and numb, and got some Diarrhea as predicted for 3-4 days and all this on a really low dose, so glad I did not take the full dose.
T
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Syliva - thank you for your good thoughts. I'm getting anxious to start something, but my radiation oncologist is pushing back wanting me to complete my next two weeks of rads before chemo. I'll update when I've truly, actually started chemo.
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Hello Josephine, TEK2009 and Suze35.
Thank you for your posts. They are always very informative and to the point. I am sure everyone reading the thread appreciates your efforts.
I would like to wish you all the very best as you deal with all your challenging treatments.
To TEK2009 I do hope that you can get a clear pronouncement about whether you have IBC. I was reading yesterday in a book advising about what to do when you get newly diagnosed, that it is always advisable to get a second opinion. I would be interested to know what you think about that advice.
To Suze35. Good luck with your chemo in July. keep us informed.
To Josephine. Many thanks for your invaluable information. Take care at work! Take good care of yourself.
Have any of you been looking at the two different threads for women with BC in their twenties and for those in their thirties? A diagnosis of BC is traumatic at any time of life, but must be really awful when you are so young. A lot of these very young women have TNBC. Whatever can be causing this to appear at such a young age?
At the other end of the scale, I have been appalled to learn that the NHS here in the UK would appear to be practising ageism against older women with BC and not offering them surgery. This cannot be right.
Please share your thoughts on all of this.
Best wishes
Sylvia.
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Dear Tek
I am sure you are right that your original diagnosis should have been IBC (but the experts will probably know that) ; but the key question is what difference (if any) would have been/ could have been ) therapeutic options should be included and this is key. Please ask your onco re the role of TNF and TNF family members in IBC
Meanwhile, I take your comments re CT on board (for bone lesions they are almost always worst versus a bone scan; so the right way round). Now I have stopped chemo I am jitterry (for obvious reasons) and I have already outlived (in my opinion) the very limited mortaility or is it disease free progression data of 5.7 months (remember everyone; median scores) for TNBC with mets (at this point I hide behind the sofa!). As ever when you are the rabbit, the headlights are important
bw
Josephine
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Josephine thanks, TNF? Triple Neg ? Sorry for slowness. I know what you mean about rabbit etc, are you feeling reasonable given everything. My husband cant believe I might only have 6 months as he keeps pointing out I am looking pretty healthy and am positive. I can see his problem but I still fear the specialists are right, I was last time I reckoned within 2 years of diagnosis and it was almost exactly that.
If I understood you stopped chemo as things seemed to have receded a bit? NED? Do you feel ok apart from obvious left over effects of the poison of chemo etc? Really hope so. Means there's hope for the rest of us. I currently have pain in my neck where my nodes are swolled from the cancer and so far no evidence of that easing, if anything feels worse, as does the rash.
Am rambling sorry.
Thanks again
T
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TNF (tumour necosis factor) IF YOU HAVE IBC (INflammatory breast cancer) what is the evidence that this molecule associated with inflammation and/or any of its closely reltaed family members is imp;icated in IBC? why? beacuase ther is mab, FDA approved therapies aginst these cytokines i (but not explored in IBC)
re me stopping chmeo............all a bit of a non science. I have responded, now have worse SEs but comparing with most not so bad, key will be how stable no evidence of new disease with this chemo break
other question TN (triple negative) is ER, PG and Her2 negative
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Hello Everyone
I hope you are all managing to have a good weekend, whatever your stage of treatment. There are so many of you that we have not heard from recently that I just hope you are all progressing and coping well. There seem to be so many newly diagnosed patients on some of the other threads, that I am wondering whether women are doing better in the UK, or am I deluding myself?
I have been on one of my frequent visits to bookshops in Exeter and have had my usual thorough at books under Health, especially the breast cancer section. Leafing my way through some of these I have found only one mention of our kind of breast cancer and even then it was only referred to as "basal-type" under uncommon cancers. Today, however, I found one book where it was actually referred to as triple negative breast cancer, but there were no details. Have any of you found any books on triple negative breast cancer?
I even Googled to find books on TNBC, but the response very disappointing.
I have come across a book entitled "The Breast Cancer Survival Manual (fourth edition) - a step by step guide for the woman with newly diagnosed breast cancer" by John Link, MD. I am sure this would be extremely useful to those having to walk the difficult pathway of breast cancer treatment. It makes interesting reading for all of us that have gone through breast cancer treatment.
Here are a few bits of information that I found in this book. There is a relatively new way of taking Taxol (paclitaxel) and covering it with the human protein albumin. Apparently this has improved the delivery into cancer cells and has made paclitaxel less toxic. The drug is called Abraxane. This name is familiar to me, but I did not know the details about it.
I also found that, in Canada and Europe, epirubicin and docetaxel (Taxotere), is used, apparently, more often than doxorubicin (Adriamycin) and paclitaxel (Taxol), which is used in the US. I also found that cisplatin (Platinol) is a highly effective chemo drug, and that high doses are only moderately toxic.
I hope some of this information can be useful to you.
Please remember that statistics are only statistics and that all of you are people and not statistics.
On Monday June 20th I shall mark the sixth year since my diagnosis. I do not know how I shall feel. A friend of mine has just e-mailed me from Canada, asking me if six years after diagnosis, with no apparent recurrence or metastases, meant I was cured. Despite what they say about TNBC and the further away from diagnosis the better, I do not feel that my six years means I am cured.
Wishing Josephine and TEK2009 all the very best as they deal with their challenging conditions.
Best wishes to you all.
Sylvia.0 -
Hello bkj66
I have just read your post on another thread and I just wanted to offer you words of encouragement. Please keep in mind that it is amazing what can be done in the world of today's breast cancer. Just ask your oncologist to be open with everything concerning you. Medical staff do not have the right to withhold information from a patient. It is very good to have a good cry and to get everything out of your system. The worst thing is to hold your feelings in. We are all thinking of you and if you want to let off steam you are welcome to do it here.
Best wishes
Sylvia0 -
Hello Everybody
I have been in a very reflective mood today as I thought about a certain Monday morning six years ago, when I went to see my GP with a large lump in my right breast and was told I had breast cancer. That started me on a ten month journey when I became part of the world of the sick as I saw it and had to learn what it was like to have to spend so much time at the hospital. You all know or are beginning to know that journey. It is the world of mammograms, core biopsies, fine needle aspirations, chemotherapy wards, stays in hospital for surgery, large radiotherapy machines, all types of scans and check ups. A world of sitting outside the doors to members of your medical team, and casting anxious looks at their faces as they prepare to tell you the next bit of news about your life.I am sending this post today to encourage and motivate you all, to tell you that you can do this journey and get back to a more or less normal life.
I was looking at the names of those who have posted regularly on this thread and I noticed that there were a lot of you who had been diagnosed in 2009. I am thinking of FreddieDLH, Karen3, Josephine, Gillyone, Penelope, TEK2009 and Luah. I thought it might be interesting for you to interact with one another, as you achieve your two years since diagnosis or approach it.
To the others diagnosed at different dates, I hope all is well. How are you doing Brenna after nearly four years after diagnosis? Hello to chilimac, how are your two sisters doing? To suelynn, how is your mother doing? Hello to those recently diagnosed, such as Maria_Malta, BernieEllen and Alif. A special hello as well to bkj66 and suze35. Hello sarahsurrey, how are you? Keep looking forward.
I have been thinking today about how I have been trying to help myself over the past six years. I put great faith in the oral Iscador that I was taking from diagnosis in 2005 up to the summer of 2009, with just an occasional rest. Iscador comes from mistletoe and is used in the treatment of breast cancer in Germany. It is an immune booster, which I am trying to obtain again. I also took the homoeopathic treatments to help with the orthodox treatment, and, especially during chemo, I felt OK except for fatigue.
I took extra care with my diet and still base it mainly on fruit and vegetables, organic when I can find them. I have been drinking many mugs of green tea for six years, and I keep reading how beneficial it is in the attempt to keep cancer at bay.
Finally, I have tried to keep mentally and physically active, and to try not to worry about the stresses of everyday life.
Best wishes from a very damp and misty Exmouth, Devon, UK.
Sylvia
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Sylvia, you are a kind person, and an inspiration. The way you gather information and present it is very helpful. Thank you for thinking of me, I am doing better now, and trying to understand my husbands side of things, but they will not ever withhold info from me again! I do believe they consider me stage 3, as the other nodes are right next to the im nodes, so that is what I am going with. At least, all are shrinking at great rates, and that I am thankful for.
Enjoy you 6 year anniversary of being cancer free! Here's to many more!
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Sylvia,
Your reflections about entering the land of the sick are very descriptive. This reality has struck me again and again as so very foreign. Thank you for your encouragement; it is very helpful. I have just finished chemo and have my first center body CT scan next month. I am already very anxious over it. I have had a clean head CT scan, a clean bone scan, a breast MRI, and two clean chest xrays - I suppose the scan is a standard procedure following the neoadjuvant chemotherapy. The breast MRI didn't show anything except the tumor but one of my nodes was enlarged and palpable until the next to last chemo.
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Tek2009
just re read your post and note that I did not address your comment whether I am currently feeling reasonable, and the answer is NO.............................having finshed docetaxol (but continuing avastin ad zometa) I thought I would feel alot better, but NO!! ................horrid, horrid loose bowels I(sorry for description) horrific gripes despite all the drugs I take, pain every where in my ribs , blurry eyes(particularly late in the day) . I realise these areall potentially still the side effcts of taxol getting out of my system , but yes I am worried, as I did not think it would be so long (only 4 weeks!!) but of course I am worried that these symptoms are disease-related. My Brain MRI is due next month but husband has suggested to bring it forward but I do not want to as it is within time frame and I do not want to seem over anxious!! My fear is that I get a cluster of brain mets (e.g in the meninges) that are not operable with gamma knife, and also that my disease is currnetly in control because of the docetaxol, and although I am a good 'coper' second time round it is rubbish.
So Tek now being off chemo is freaking me out more (although I know the chemo is still working its way through the system). I guess I will have to wait patiently, and continue (one day at work one day off) which suits
best wishes
Josephine
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Josephine
Not sure if it helps but first time round it took me almost a year to recover my body properly after all the poison it had had. I had bone pain from the taxol that really did take months to go away. I know just what you mean about the fear of it spreading, especially as mine has effectively already gone up my neck and back across the breast. Every ache and pain I think now is the cancer and not the chemo I pray I am wrong but something inside me feels it, the stabbing pains in my chest right where the rash is worst is not helping and the itching is horrid so I really know what you mean and how horrible it is for you. I can only keep my fingers crossed for you and having the scans does not always mean they can tell you anything concrete immediately so in some ways waiting a little is probably a good thing but who knows. I had one in late November 2010 and it showed nothing, by March I saw signs of spread.
Really hope it gets better soon. Good luck for the scans when you do them.
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Josephine
I forgot to add I have had two weeks of the Xeloda chemo and just finished my first week off, my side effects got worse over the week off, so maybe that gives you an idea that it will take a while to get chemo out of your system.
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Hello bkj66
Thank you for your post and your kind words. I was glad to know that you are finding our thread useful.I was glad to know that you are doing better. I can understand that you want to know everything about what is happening to you. I would be the same. I was also glad to know that you are trying to understand your husband's side of things. We must all remember how difficult our breast cancer diagnosis is to our husbands and to all our family members and friends. Your husband will have all kinds of emotions going through him and in all of it he will want to try to protect you. Do either of you attend any local support groups? There should be one to help both of you. I encouraged my own husband to go to the regular meetings for carers organised by our local Hospicecare. He found it very useful. It got him away from our apartment and enabled him to speak and mix with other carers. There was always one Hospicecare nurse in attendance. These meetings enabled me to have time to myself. I needed this and usually spent the time very quietly with my own thoughts. No matter how much help and support we have, the breast cancer journey is a lonely one. Remember, too, there are complementary therapies, such as aromatherapy on offer for both of you.
I have read many times that positive lymph nodes do not count as metastases, so I think you should be stage 3. It is my understanding that stage 4 is when cancer has spread to places such as bones, lungs, liver, etc.
I was so glad to know that everything is shrinking at great rates. Keep up the good work and keep being strong. It does not do the body any good, in my opinion, if a person gets despondent or feels helpless. I feel that you have a good fighting spirit.
Best wishes
Sylvia.0 -
Hello christina1961
Thank you for your post and your kind words.You must be very relieved to have finished chemo. It is the longest and probably most difficult part of this breast cancer journey. How are you feeling at the end of your journey with chemo drugs? It helps others to know that there is an end to chemo and to know how others feel at the end of it.
I noticed that your diagnosis was the same month as BernieEllen, so you might have something to say to each other. BernieEllen is starting her chemo probably this week. It would be interesting to know whether she will get the same drugs as you, since you are in two different countries, the US and Ireland. It will also be interesting to know this because you have had neoadjuvant chemotherapy and she has had surgery before chemotherapy.
I was glad to know that all your scans were clean in the past and I hope that everything will be fine with your CT scan. I remember that I had a CAT scan and bone scan on diagnosis and then I had the two scans again after finishing the chemotherapy and before surgery. I have never had an MRI scan and I do not think they were giving them at that time. I think, because of the difference in our medical system, yours, mainly insurance based, and ours on the NHS, tax based, we do not always get the same tests and scans as you can get with insurance. Often, patients here have to go private to get extras.
Try not to worry. We shall all be thinking of you and wishing you good luck!
Best wishes
Sylvia0 -
Hello TEK2009 and Josephine
I was so sorry to read your posts and learn that neither of you is feeling good. I am glad to know that you are able to support each other. It is difficult for me to know what to say, since so far I have experienced only the treatment for primary BC. I do hope that you will be able to get some help for any nasty side effects from the treatment you are now on. The nasty bowel problems, blurry eyes and pain are probably a combination of the result of the Taxol and the new drugs. It must be so taxing on the immune system.I do remember my oncologist telling me when I was going through treatment to get in touch with her if I was concerned about anything that was happening to me and that, if it was after she had left the hospital, to phone the oncology ward for advice, the number of which I had been given when I started treatment. She told me that if all else failed, phone the emergency GP.
I would just like to say that I am thinking of both of you and that my heart goes out to you.
If any of you reading this thread can give help and support to TEK2009 and Josephine, please do not hesitate to post.
Best wishes
Sylvia0 -
Hi to everyone, chemo 4 postponed. Having a port put in next week. Not happy about this.
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Hello BernieEllen
I was sorry to learn that your fourth chemo had been postponed. It is a pity because a person gets all keyed up for it and then has a let down feeling. Do you know how the port will be installed? I understand that it is often with a local anaesthetic. I do not know much about this as mine was installed after chemo, during surgery for a mastectomy and was put in, in case the cancer came back after treatment was finished. Were you told you had to have this installed?
I hope all goes well.
Sylvia
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BernieEllen, I have done chemo without a port (in 2003) and with, currerntly, and I must say the port is so much better and easier. For the surgery they put me totally out and used it the same day, hardly any discomfort at all. I think you will be surprised at how much easier it is. Are you having it put in for just one treatment, or do you have to do more?
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Good morning everyone. Just waiting for the hospital appointment for the port to be fitted - day appointment only. Still have 3 more rounds of chemo to do. Hopefully it won't delay things too long.
Take care
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BernieEllen,
As Sylvia pointed out, we were diagnosed around the very same time and I also have triple negative breast cancer. I did chemo first with six rounds of TAC. My last chemo was 6/13. I meet with the surgeon tomorrow to discuss my surgery.
Just wanted to say that I'm glad to have had my port - they have even taken blood from it at times because my arm was becoming sore from having blood taken. How have you been doing with the chemo?
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Hello christina1961
I just wanted to say I hope everything goes well when you do have your surgery. Let us know what kind of surgery you have.
Hello bernieEllen
Have you been told what kind of port they are proposing for you? A common type is the Hickman catheter, which can be inserted under radiological control with local anaesthetic, and remains in place for many months. It does have to be flushed out, often weekly, with saline and heparin.
Another type of central line, which may not be as robust, but is apparently simpler to insert, is the PICC line.
The other port must be the one I had, done under general anaesthetic at the same time as I had my surgery. This is put under the chest wall and not externally.
I hope this information helps.
Sylvia
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Hello Everyone
Since we have been talking about ports and chemotherapy treatment, I thought I would post a bit of information about chemotherapy for those of you who are beginning chemotherapy or are in the middle of it. Although installing ports seems to be more and more common, chemotherapy is most often given into a vein in your arm as a session of treatment. You have a cannula installed in the back of the hand into a vein, the opposite hand to the side in which you have the breast cancer. The chemotherapy drugs are contained in an intravenous drip and the drip is connected to the cannula. You need to be sitting comfortably, as it takes quite a time for the drip to distribute the chemotherapy drugs throughout the body. This can take an hour or so. Of course, chemotherapy can be before or after surgery. There is usually a rest period of about three weeks for each session, although lower doses can be repeated more often. The number of sessions varies. I think we all know the names of the drugs by now that are most commonly used. I think we all know that there are various combinations of drugs used.
There are quite a few side effects usually caused by these chemotherapy drugs, but we all vary in what side effects we have. Apparently the most serious side effect of chemotherapy is bone marrow toxicity. The bone marrow produces our different blood cells and these can all be reduced by chemotherapy. For example, chemotherapy causes a drop in white blood cells and these cells help fight off infection, so we have to be vigilant about not getting infections. Red cells carry oxygen around the body and platelets make the blood clot, so we have to be vigilant about any reduction in these. The first sign of bone marrow suppression is a fever, for which you will need antibiotics.
I clearly remember the visits of a district nurse, the day before each chemotherapy session was due to begin to take a blood test. This was sent to the lab at my hospital and was available to the chemotherapy nurses in the chemotherapy ward on my arrival. If there is anything that is not right that chemotherapy session may not go ahead. I was fortunate not to have any problems, but I do know from my reading of various threads on the forum that women are being given Neupogen or Neulasta to help keep white cell counts high enough to prevent infection. I had not heard of these back in 2005. Are any of you being given any of these?
Apparently, there are two drugs called Procrit and Aranesp which help to stimulate red blood cells and help decrease the risk of anaemia. Are any of you being given these? If you are anaemic you can feel very tired, lethargic, dizzy and breathless. I was told when going through treatment that sometimes blood transfusions are necessary. I was lucky enough not to need any, but I do remember seeing some women being given blood transfusions in the chemotherapy ward.
Other side effects of chemotherapy can be bruising or bleeding. I do remember having a few nosebleeds and apparently this is a sign of low platelets. I took a homoeopathic remedy for this and the bleeding was short lived. Another side effect is nausea and vomiting. I found that the anti-emitic drugs given during chemotherapy and for a few days afterwards worked well for me and I did not experience these. I did eat ginger-nut biscuits, drank ginger and lemon herbal tea, often with pieces of real ginger root added, and ginger capsules. Mouth problems can also occur, but I found there were special toothpastes and mouthwashes that could hold these at bay or alleviate them. They are the Biotene products. These are easily available now. The worst side effect for me was the hair loss. It is traumatic to see your hair falling out after the first chemotherapy session but you soon get used to it and get on with it. There are many other side effects but they may not affect you personally - loss of eyebrows and eyelashes, premature menopause, constipation, diarrhoea, problems with feet and nails. I am sure there are others and it would be useful if we could have posts relating your own side effects. I remember having very red palms for a very long time, and it even happens now, as does blushing of the face when I feel hot or stressed. Some women talk about chemo-brain - loss of cognitive function. My feet are still very strange, apparently peripheral neuropathy, which I am told will never go away. I certainly had a funny metallic taste in my mouth when on paclitaxel. What are your experiences during chemotherapy? The good news is most things revert to more or less normal in time.
That is enough for now! I hope all of you are making some progress, especially with the chemo and not feeling too awful.
Sylvia.
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Hi Christina and Sylvia. I'm half way through six rounds of A/C chemo. Being Bipolar the worst for me is the mania, if that goes too far - problems. Nausea is controllable and only comes on about three days after. I'm still working, only having the chemo day and the next day off. Can get tired, so take naps if i need them.. Do have nosebleeds but not a big problem. Have no idea about the type of port they will fit. Arm very sore, can't fully straighten it. The worst for me is i'm banned from my animals - chickens, quail and my connemara pony - Ash. Ok with the dogs and husband, at the moment.
Hope you all have a good weekend
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BernieEllen,
It is hard being separated from your animals! What is a connemara pony? - I have been staying with my sister and my dogs and cats are at home with my husband. I've been very careful about avoiding anything that might cause an infection and even then ended up with a minor one for which I was given antibiotics. I believe it was from eating dinner out one night at a buffet.
Sylvia,
Thank you! I saw the oncology surgeon today. He wants to do a mastectomy rather than lumpectomy. He is not at all convinced that I need radiation but wants to postpone the decions on that based on he finds during surgery. I am still considering radiation either way, and am ever in the process of researching the issue. I know some recent studies have shown a benefit to node negative patients, but trying to read between the lines in some of these studies is difficult for a layperson. I know that sometimes the studies are not comparing apples to apples. It is also a fine line to know when to drop the reins so to speak, and trust the physician. I have always been very proactive, but at the same time I realize the benefit of listening to those who actually have the relevant education and experience.
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Hello Everyone
I have a few questions that I thought someone on the thread could answer.Did any of you have chemotherapy and surgery but no radiotherapy during your treatment for primary TNBC? I know that some women have just surgery and radiotherapy, but I do not remember anyone not having radiotherapy.
To those of you going through treatment for recurrence or mets, has anyone ever been offered radiotherapy as part of that treatment, or is it always some kind of chemotherapy?
Are any of you with mets taking a combination of capecitabine (Xeloda) and vinorelbine (Navelbine)? My understanding is that vinorelbine belongs to the group of drugs known as antimitotics. Paclitaxel and docetaxel belong to this group, according to one medical book, but, in another, docetaxel and paclitaxel are down as antimicrotubule agents.
Thanking you for your help.
Sylvia.
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Hi Christina, connemara ponies used to run wild in that part of ireland. It's very rugged country so the ponies are extremely hardy. They are generally different shades of grey going into black down their legs. My girl is a rare colour - a blue roan. Will try to attached picture but still not very good at doing that.
Hi Svlvia, my feet have been getting very sore.
Hope you're all enjoying the sunshine
Bernie
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