Calling all triple negative breast cancer patients in the UK
Comments
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Dear all,
Thank you for your messages of support and solidarity.
My mum and myself were as shocked as you were to hear we had to pay for the paclitaxel (Sylvia, this is the one my mother has been prescribed not the docetaxel-on the basis that it seems to involve less severe joint/bone ache. Clearly every oncologist has their own pet theory about which chemo has the less severe side effects. I am very interested to hear that you were given the docetaxol on the basis that it is is less cardiotoxic. Certainly something we are very worried about with my mum. I will ask Dr L about this).
We are yet to hear about how much we will have to pay. Dr L is working on that now. She did say the drug is cheap but the administration every week is the expensive part. And how long it is going to take to transfer the administration of this drug to the private sector is a whole other matter. We haven't heard anything about this yet, and are slightly concerned re: time ticking away. My mother's now been off chemo for over 4 weeks.
The problem is that we still feel so battered by my mother's AC experiences - and have so enjoyed having 4 weeks off thinking about cancer-that neither of us has the energy right now to take this one to our MP and, if necessary, beyond. But I hope my energy will resume , and, in that case, I will do something about it.
On my to-do list is also to write to the hospital/Woman's Hour/somewhere about my own " 4-day retained tampon misdiagnosed as advanced cervical cancer experience" in the summer. I'm not quite sure where I want to go with this other than to decrease the chances of this particular crazy misdiagnosis ever happening to anyone else again!
Gill - it sounds as though Norwich/Norfolk Hospital trust are in a rather similar state to Oxford at the moment. Why did the hospital drag their heels so much re: you getting chemo? Did they at any point say you had to pay for it?
I'm so pleased that you got to see Dr Harries. We still think of him very fondly! And are considering getting a second opinion from him re: all that's going on with us now.
Sylvia - you're right that my mother does feel very weird about having to take medication for her heart. That said, she is not anti-medication per se. The one actual advantage I can see to her having to take beta-blockers is that there does seem to be some suggestion that it slightly reduces the chances of TNBC coming back in post-menopausal women. I know there has been discussion about this on the forum before, and clearly the evidence is mainly based on observational studies and not concrete by any means. Still, it is better than if the beta blockers actually raised her chance of cancer.
(I like to talk about "better than nots" in this whole situation: with respect to the TNBC, it is better that she had two cycles of AC rather than none; it is better that the AF(if one has to get it) is something that can be treated effectively; it is better that beta-blockers may have some anti-TNBC effect; it is better that she has recovered pretty well despite the huge battering four weeks ago than if she hadn't). Thank goodness for the tendency humans have towards optimism!
Anyway, take care of yourselves. I will keep you posted.
Flora x
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Hello Flora,
I was not asked to pay, neither was funding mentioned at that time. I was simply told by the Surgeon that I would be offered no further treatment. My chances of survival without chemotherapy were 50-50. I saw your post very soon after and went to see Dr Harries within a few days. He was appalled and made it very clear that insufficient funding could not stand in the way of what is standard treatment. He said it was unheard of and was appalled. He sent a treatment plan to my hospital saying that he assumed that this would be followed. Dr.Harries said that after chemotherapy my survival rate would just be a few points behind other TNBCs and that I had every chance of a cure.
Flora, in your position I'd go back to Dr. Harries. He and Professor Tutt are very influential men in the world of breast cancer and have a special interest in TN. Dr. Harries may well decide to investigate the issue of NHS funding in failing hospitals. He's such a compassionate man, as you know, but I also detected a streak of solid steel.
I'm so bl...y angry that I intend to begin researching the phenomenon of cash for life within our NHS. I've no intention of sitting back while this becomes the norm. Wondering how to campaign effectively and who to get onboard? I know we (your mum) both have get through chemotherapy first, but I do feel that something has to be done.
It may well be illegal to demand cash for, possibly, life saving treatment. The NHS is not the private sector.....yet.
Well done for raising the issue of tampons. They may be convenient, but I've always thought they were unsafe. Your misdiagnosis is worrying. How could any competent doctor get it so wrong?
Keep ploughing on,
Gill X
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Hi Susie,
Doesn't seem fair to go down with a cold during your first free week. My husband has one too so I'm staying out of his way for now.
Gill X
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Hello Gill,
I agree with what you say about balancing the books. All this cutting of services since 2010 has served no purpose. It is a false saving.
I agree with you about the authorities suddenly refusing to fund the rest of the chemotherapy treatment. I personally would not accept it and would be challenging it. Cases like these need to get on the talk station LBC and others and put their case. The Health Secretary, the pathetic Mr Hancock, needs to attend to this. I do not think that patients can be made to pay for their treatment under the NHS.
I do agree that cancer patients have enough to contend with and should not have to worry about money. I agree that the NHS and the UK have indeed entered a very dark place.
Take care and have a good weekend.
Love.
Sylvia xxxx
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Hello Gill,
I have just read your other post dated November 2nd in which you mention Zometa.
You said that your oncologist at Guy's Hospital told you that, in your case, it would help your chemotherapy to be more effective. How does that work? I must admit that I have not come across this.
I would love to find out why some patients get FEC and other patients, including me, just got EC. I do know that F (5FU) – fluorouracil – belongs to the group of chemotherapy drugs known as antimetabolites.
I noticed too that when I was looking at all the chemotherapy drugs again that one regimen is FEC, another one is FEC-T and then another one is T then FEC. All this got me wondering why one drug is used first rather than another.
Thinking back, on the whole, I think for me the taxane (docetaxel) Taxotere has had more lasting effects on me than the EC. The taxanes have caused peripheral neuropathy in the feet, and lymphoedema in the right arm.
You are right to be optimistic. Keep this up.
Love.
Sylvia xxxx
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Hello Flora,
Thank you for your latest post. I think you are right about oncologists having their own pet theories about the side effects of chemotherapy. I think we could all probably make up a book entitled "What my oncologist told me about my chemotherapy drugs"!
I can remember asking my oncologist about the two chemotherapy drugs that are in the group Cytotoxic antibiotics – doxorubicin (Adriamycin), epirubicin (Ellence). She had said I would have epirubicin because it was not so hard on the heart. I did not have any heart problems from the chemotherapy according to the ECG I had afterwards.
As for the taxanes, I asked why I was having docetaxel (Taxotere) rather than paclitaxel (Taxol). She told me that docetaxel was less harmful on the heart.
What I was not told at any time was that the taxanes cause peripheral neuropathy in the hands or feet and that they also cause lymphoedema. I only learned this afterwards.
I am sure that your mum will have picked up a lot during four weeks off chemotherapy. It will have given her immune system time to recover.
I do hope you and your mum will manage to have a good weekend.
Love.
Sylvia xxxx
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Hello Flora,
I have just read the rest of your last post. I do hope your mum will tolerate this medication and that she will not have side effects.
I was surprised to read that you said that there does seem to be some suggestion that taking beta blockers reduces the chance of breast cancer with triple negative receptors recurring in post menopausal women. I must admit I have not heard this, but thinking about it I cannot see why. Like I said to Gill, there seems to be a lot of claims being put forward by different oncologists to persuade patients to take pills. It is also apparently being said that the drug Zometa, a bisphosphonate, used to treat bone disorders, prevents a recurrence of breast cancer.
All I can say about all this medication and supposed wonder treatments, is that I am so glad that I had breast cancer with triple negative receptors and that after my standard treatment I did not need any more drugs, but I feel hard work is going on with TNBC to bring in a lot of post-treatment drugs that will do a lot of harm. I am now 13 years and 4 months since diagnosis and I have not touched any medication and put my trust in eating healthily, and keeping active.
Keep in touch.
Love.
Sylvia xxxx
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Hello again Sylvia,
I googled Zometa and came across several pieces of research which suggest that it does help prevent breast cancer from returning. Sheffield University has done some research and a trial has been undertaken somewhere else - the results are not yet published. Of course I'll never know what has worked in my case and I've also put a great deal of faith in having a mastectomy as soon as possible. The advantage of this, for me, has been no side effects whatsoever. No pain, no loss of arm movement and a very neat, rapidly fading scar. I know I'm very fortunate to have had such a good result. The long term side effects of chemotherapy do concern me, but I feel it's a risk worth taking for my cancer. Not for all cancers though and this is finally being recognised by medics. Like you, I'm very pleased not to be taking drugs for years down the line , particularly now that Tamoxifen no longer seems the easy option that it once did.
I do hope that Raymond has fully recovered and you can both enjoy your weekend.
Love,
Gill X
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My understanding is that while Zometa will not prevent a recurrence of the cancer, it will make it more difficult for it to metastasis into the bones, so it seems to me a worthwhile thing to have.
Susie
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Hello Susie and CocoonCat,
Pevention of mets to the bone, even if only by a small percentage, is absolutely proven and thats why Zometa is given. However, it seems that the use of Biphosphonates in BC may go further and have a triple effect. Research at the University of Sheffield indicated that adding this class of drugs to chemotherapy before surgery actually made tumours shrink significantly more than by chemotherapy alone.
The Oncology magazine, Cancer Network has an article, 'Biphosphonates in Breast Cancer: A Triple Winner'. The article discuss a potential benefit may be an anti-tumour effect. According to this, the bone marrow microenvironment is a possible site where breast cancer cells could lie dormant and evade chemotherapy. These may then escape the bone marrow and either cause mets to other organs or the bone. Biphosphonates may help prevent this.
Lots of 'mays, mights and potentials' here, no definites. Much more research needs to be done. I would have liked to have seen more trial results. However, I'm taking everything on offer, even if this helps by only a very small percentage.
I guess breast cancer news changes so quickly and we'll all benefit from the vast amounts of money being poured into research. Just looking for the day when surgery and chemotherapy are no longer needed at all.
Gill X
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That's very interesting, Gill. I'm just keeping my fingers crossed that I don't get bad side effects from Zometa.
Like Sylvia, I'm actually glad that my cancer was triple negative and I don't have to take hormone tablets for 5-10 years. There was a young Spanish woman whom I often came across in the radiotherapy waiting room. She had lumps in both breasts, mostly oestrogen positive but some positive for Her2, which means she has to take two lots of hormone treatment!
Susie
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Hi Susie,
Poor woman. There are so many women out there with a much more difficult journey than ours.
You have to wonder how someone can have different breast cancers at the same time. Apparently it's even possible to have different cancers in the same breast at the same time. Despite everything, I can't help feeling that I'm one of the lucky ones.
Hope the cold is on the mend.
Gill X
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Hello Gill,
Thank you for your latest post. Raymond has now fully recovered and we are trying to have a peaceful weekend.
Thank you for your information about Zometa. It is not something that I would ever have contemplated taking, but we all have to make our own decisions. The medical profession seems to be forever pushing pills and potions on patients! I tend to avoid Google and also think that research can push everything to get the results they want. They can easily discard any part of the research that does not suit what they want to prove (I am not cynical!!!).
I often look up any drugs that are mentioned in the BMA New Guide to Medicines and Drugs – The complete home reference to over 3,000 medicines – 10th edition, fully revised and updated 2018. On page 423 of this book, there is a whole page on zoledronic acid (brand names Aclasta, Zerlinda, or Zometa). It says that it can only be given by infusion into a vein and has a very long duration of action. It is used to treat osteoporosis and other bone disorders. It is also used on patients who are on long term steroids and can develop osteoporosis. It does say that it is used to prevent bone damage in patients with advanced cancer that has spread to the bone. It does not mention prevention. There is a whole list of side effects.
I do not like any bisphosphonates and it does mention on this page that Zometa can cause ulceration of the jawbones. I read this problem about bisphosphonates like Fosamax causing necrosis of the jaw.
I do understand that with breast cancer treatment we all have to make our own choices. I think if we can possibly do without chemotherapy then it is good. I have friends here, one of whom is well over 30 years since diagnosis, and probably had triple negative, and she just had lumpectomy and radiotherapy. I do not know what kind of breast cancer she had. I am amazed at how some people just talk about the receptor status and not the kind of breast cancer they have.
It is good that you have had such successful results from your mastectomy. I do remember that my oncologist told me that one of the signs of a recurrence is the appearance of a rash along the line of the mastectomy scar. Needless to say that I still keep an eye on this and still do my own breast check on the good breast on the left and examine the area of the mastectomy by running my hand over it and looking for anything that is not smooth. My oncologist told me that she was looking for smoothness when she did this. I also examine under both arms to feel for any swelling etc.
I think we are lucky not to have to go on ten years of drugs as the hormonal breast cancer patients do. Tamoxifen has nasty side effects, as do the aromatase inhibitors, such as Arimidex.
Saturday seems to be disappearing and I have already closed the blinds ready for the long dark evening.
Wishing you all the very best. Take care.
Love.
Sylvia xxxx
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Hello CocoonCat,
It was nice to see you posting on the thread. I was looking at your details again and was quite surprised to see how quickly you had got through your treatment compared to others on the thread, including me. I was wondering how many months your chemotherapy took. I suppose you have finished radiotherapy. Are you doing anything else?
How is everything going in Australia?
Special hellos to Kath and HelenLouise.
Love to you all.
Sylvia xxxx
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Hello Mary,
I have missed you on the thread this week and I do hope that all is well with you and that your brother is still making progress.
Please let me know all is well.
Special hellos to Val and Monica in the US. Pam, if you are looking from time to time in your busy work, I am wishing you well.
Love.
Sylvia xxxx
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Hello to the Canadian contingent,
adagio, 53Nancy, Moth and Cheryl.
I do hope all is well with the four of you.
Love.
Sylvia xxxx
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I can understand people having reservations about the over-medicalisation of our society, but feel that, when it comes to cancer, I have to accept the advice of my Consultant Oncologist as to the best treatment for me, which includes Zometa.
As for the flu jab, I have asthma and still have clear memories of a day of flu some 20, even 25, years ago when I was struggling to catch my breath, unable to use my inhalers because of a hacking cough, and thought that I might die. Nothing would induce me to miss the annual jab.
Susie
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Hola Marias!!
It is very good to hear from you. I am also glad you can be back at work, but I am sorry to hear that it is very hard on you and makes you tired. I do hope you will feel stronger as time passes, and your body can regain some strength. You have been through a long ordeal and this will take time.
Please come back from time to time and let us know how things are going, we love to hear from you!
Abrazos,
Mary
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Hi, Sylvia
I have been very tied up for most of last week, I will try and catch up with some things today. We had a lot of meetings, sitting all day for 2 days and listening and trying to stay focused is very tiring, we then had an event because of the business expanding which took up another day. Most of another day was spent taking one of my sis-in-laws to the closest large airport, which is a 2 1/2 hour drive one way. I woke up this morning wondering what day it was, and then remembered that our time had changed too, overnight. It will be dark very early tonight.
I have been reading with great sympathy about Flora's mom having been through so much and then being told that she should have more chemotherapy (paclitaxel), and then being told she would have to pay for it. It just seems like one blow after another. I also think she should take this time to build her strength and then make her decision, whatever she and Flora think best.
I also see that Susie has come through her treatment very well, that is so good to hear. Gill is having a harder time with chemo, I feel for her, it was not easy for me either. Dealing with all of the bureaucracy in the middle of one's misery is just awful, none of us go into this prepared, many of us become experts after the fact. It's too bad we can't really leave it in the doctor's hands, they are busy, and see so many patients in a day I"m sure we all become just the next one to walk through the door. Unless we are very lucky and can go to someone like Dr. Harries.
I am really surprised that patients are being told that they might have to pay for cancer treatment drugs. At the same time patients are being told that they must have them, and it is their only hope. I will comment further on this later.
I too was surprised and happy to see a post from Marias, I hope she will regain her strength as time passes and has no further health scares. She has been through so much. For some of our newer posters, Marias was diagnosed with TNBC, and had many difficulties with her treatment; and then while trying to recover was diagnosed with thyroid cancer, and had problems with that.
I will be back shortly!
Love, Mary
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Hi, to Gill, Susie and Flora
Susie, it seems you are doing well and not suffering any side effects of any magnitude. That is just wonderful and keep up with whatever you are doing.
Gill, I see that you will be starting Zometa after you finish your rounds of chemo. I know there are differing schools of thought on this, but Susie is taking it with no ill effects so it is a decision that is up to you. I have read a little on metaplastic TNBC, and about the fact that it travels through the bloodstream. I thought all cancer stem cells advanced in the bloodstream? I just find that part confusing.
Flora, I feel very bad for your mother and the trials she is going through. That being said, she is one lucky lady to have you in her corner. I know she has another decision to be made down the road, whether or not to have more chemo. If it's any help, I did not do all the docetaxel I was supposed to do, because of my side effects. I am now at almost 5 years (3 months to go) past diagnosis when I was 61. And I did hear the same thing you heard during treatment, that any chemo is better than none.
I am also very sorry you are told that payment for further chemo is up to you, unless you wait for 6 more months. That seems very odd to me, although our Health Care is handled differently than yours, ours is sort of a hodgepodge of private insurance and governmental. This is further stress at a very stressful time, please give your mother a hug from me.
I have read somewhere about beta-blockers being used for anti-cancer purposes. There are quite a few older drugs that are being repurposed in this way, another one is Tagamet, which is actually an acid-blocker for the treatment of acid reflux. Sylvia, Chris Woollams talks about the off-label use of these older drugs for cancer care, he is usually in favor of it because they have been around a while with very few ill effects. Low-dose aspirin is another one of these favored old drugs.
Gill, Susie and Flora, I wish you the best as you move forward! Talk to you all soon,
Love, Mary
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Hi Mary,
I think the main difference with Metaplastic is that it doesn't seem to make use of the lymph nodes to catch stray cancer cells. Instead it makes straight for the bloodstream causing mets much more quickly. That's why it's so critical to throw everything at it as soon after surgery as possible. Some metaplastic patients do have a little lymph node involvement too - just to confuse things.
Metaplastic cancer has a habit of recurrence that is much quicker and more often than other breast cancers. I have a Canadian friend who was wrongly diagnosed as triple negative. Her cancer returned quickly, but she was very fortunate as it appeared along the scarline of her lumpectomy and she noticed at once. Biopsies showed that it had been metaplastic all along. She went through mastectomy and chemotherapy again and is NED three years later. Quick treatment was critical, before the cells went travelling.
I know that you've had some fairly challenging side effects from treatment, but here you are, nearly five years out. May life and health just go on getting better and better.
Love,
Gill X
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Hello Sylvia,
Thank you for letting me know about the significance of a rash along the scarline. I had only been looking for lumps. A TN friend had neither, just a very persistent itch.
I went for a long ramble around the village after lunch and there was a real sense of the countryside closing down until Spring. Hardly a bird, rabbit or squirrel to be seen. I do like the dark evenings, curtains closed, log burner blazing, the cats (and the husband) peacefully sleeping.
Hope you and Raymond enjoy the rest of your evening.
Love,
Gill X
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Hi Mary,
I haven't started Zometa yet so can't speak to its ill effects. My last week of radiotherapy (the boosters) has left me with a couple of sores on my breast that I could do without, but the radiotherapy nurse is tending them for me and I hope they will clear up soon. Otherwise, can't complain, except about how early it gets dark.
Susie
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Hello Mary,
It was nice to see you back on the thread. I can certainly see that you have had a busy week. I did not realise that you were running a business. I hope you have a more relaxing time this coming week.
I see that you have now caught up with the posts. It is true that Flora's mum is having a difficult time and she should absolutely not have to pay for her treatment. The NHS is free at the point of service. There is, of course, private health care here and that is the only occasion you should pay. I think she needs to get strong again and then decide what she wants to do.
I was very happy to see Marias back on the thread and I do hope she will be well enough to post. I feel the same about Hanieh and Gina and I do hope they are both alright. There is such a lot of trouble in both of their countries.
As for the ever-increasing assortment of old drugs, that are being offered as cancer preventives or other purposes, I think we all have to make our own decisions. I firmly believe in "let food be they medicine, and medicine be thy food". I know that metformin is being used, as well as aspirin and beta-blockers, bit to mention the one you mentioned, that goes by the brand name Tagamet, the generic name of which is cimetidine, which has a whole load of side effects. I do remember that Chris Woollams talks about some of these drugs, but that does not necessarily make them right. I believe that all drugs have side effects and that there are no exceptions. I also believe that the medical establishment and big pharma is trying to medicate everyone from the cradle to the grave and that our government is failing to take care of people from the cradle to the grave and is trying to dismantle all that we built up in 1945 and 1948. It makes me so angry. I do not think low dose aspirin is a safe drug.
I have a busy day tomorrow with a directors' meeting at 2 pm and we have a lot to cover.
It has been a miserable November day here, and I have been trying to do a bit of reading in both French and English. I am trying to read 21 lessons for the 21st Century but find I lack concentration. I did see that the author has all three of his books on the Best Sellers non-fiction list in French and I am not surprised. The latest one has been translated into French pretty quickly. All three are doing well here as well. The other two are Sapiens, which explores the past, and Homo Deus, which explores the future and this new one, 21 lessons for the 21st Century explores the present and discusses a lot of our current problems.
The thread is fairly quiet and a lot of those who have finished treatment no longer post.
That is about all for now.
Love.
Sylvia xxxx
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Hello Susie,
Hope the radiotherapy sores will disappear quickly. Your first week of freedom and you have this and a cold to deal with, so unfair.
I too have reservations about Zometa, particularly as the benefits seem so small. Like you, I'm going to try it as I don't want to be thinking 'what if' at a date in the future.
I had (I think Swine) Flu in the mid seventies major epidemic. I was young and fit at the time but very nearly died as so many fit young people did. As soon as the flu vaccination became generally available to all age groups, I had it. No bad reaction and no flu. I do know of others who did suffer reactions though. I just won't take any chances with flu ever again.
Lovely sunny day here in Norfolk, so I'm off out for a long ramble around the country lanes. I'm completely back to my old self again. Hair still intact and skin really glowing with health. Where have the spots and open pores gone?
Take care,
Gill X
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Hi Gill,
Glad to hear that you're feeling so well. We are having good weather for November!
Susie X
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HI, Gill
Thanks for filling me in on further details explaining metaplastic TNBC. Research is telling us more and more about TNBC, and progress is being made in the area. I read an article on immunotherapy treatment yesterday that explained that process quite well, and there are new drugs coming out often, although they are usually given with or after the old standard chemo. I do know that metaplastic can also occur with non-TNBC tumors.
Our "fall back" was just this weekend and it takes me a while to get the swing of it. Last night I was out of whack and had a very hard time falling asleep, hope that resolves quickly. In a way I like the early dark if I don't have to go out for anything; if I am just home it does seem to make me feel better about stopping working and just having an early dinner and calling it a day. The leaves are falling like crazy, and they are blowing everywhere. I have a partially enclosed area in front of my house and it seems to be a magnet for leaves, once in they can't get out until I have to physically remove them. One of my jobs for today.
Glad you are feeling so well, glowing skin sounds awesome!
Talk to you soon, love
Mary
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Hi, Sylvia
I thought I had commented before on my business involvement, but maybe quite a while ago. I am a part-owner in a business, I am not in the day-to-day running of it. We have quarterly attendance at meetings, where we learn about ongoing happenings and are required to sometimes say yay or nay. Sometimes photo-ops and so forth.
I am sorry the NHS is refusing claims, that is very disappointing. I don't know how this is fixable, when there are so many added claims from people entering the country who probably cannot find work immediately. It is just by raising taxes, I suppose, which also causes pain. If one wants the best doctors and the best fastest service it has to be paid for, we have the same problems here although here we are a hodgepodge of private insurance and government-handled insurance. Everything just gets more and more expensive and the Medicare for senior citizens is used as a tool every election.
I was not advising anyone to take the older drugs that are being repurposed for cancer care in some cases. I was only commenting on it, I found it interesting when I read about it on Chris Woollams' posts.
You are doing some heavy reading, I admire your dedication to keeping your language skills alive. I bet it is very good for your brain as well.
I am trying to get used to the time change, it takes me a few days. It doesn't help that it has been cloudy, rainy and gloomy since last Wednesday. Tomorrow promises sunshine but colder temps.
I shall talk to you soon, have a good week!
Love. Mary
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The last shot of color from my pear tree, it grew a good crop of pears this year.
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