Calling all triple negative breast cancer patients in the UK
Comments
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Hello Mary,
Thank you for your post of April 4th. I was glad to read that you are making progress.
I can understand that you have not had time to study the Chris W emails. I do find that there is sometimes too much detail and have taken to just underlining the basic facts. There is often a lot of repetition. In the April 1st email there is mention about metformin and how it is increasingly being talked about with reference to cancer. He says how it cuts blood sugar and some research that shows that it can attack the AMPK pathway in the cancer cell power stations. He points out that metformin can cause sleepiness and deplete B12. Of course we know that it is the most common drug used for diabetes. I think his main point is to say that the herb Berberine works just as well as metformin and is in fact better than metformin. He points out that Berberine cuts blood sugar, is an inflammatory, reduces blood lipids, reduces blood pressure, kills microbes and actually leaves metformin a long way behind. He then points you to the section about Berberine as a cancer treatment and there are lots of details here.
I do not know much about Berberine but would be interested to hear from anyone taking it as an anti-cancer treatment. It would also be interesting to hear from anyone taking metformin as an anti-cancer treatment. I think there might be quite a lot of people.
I have decided not to go through all the other information in one go, as I feel it is too much for people to absorb. I shall gradually try to put in any other basic information.
As for my 'job' as director, it can be quite stressful as with the other director we have to make decisions based on what is good for the Company as a whole and not what is good for the whims of individuals. We do not have really troublesome residents and we are nearly all retired. Our apartment complex is what you would call a Condominium and all the apartments are owner-occupied.
Your daily nutrition sounds very healthy. I eat a lot of the same things, but as you know I do not eat any meat, poultry or dairy products. The only animal products I have are some fish and cold water prawns. Occasionally I have organic eggs. I try to keep supplements to a minimum, but regularly have daily vitamin D (4,000 IU), a vegan probiotic, and soft gel garlic capsules. From time to time I take a Solgar Bone Support Calcium supplement, but I do wonder about calcium supplements and try to get calcium from food to deal with osteoporosis. Two friends of mine, both nurses, have said they steer clear of calcium supplements. One said that they furred up your arteries and the other said that they were not good because of breast cancer.
I do hope you do not get lymphoedema. Mine is quite mild and does not really bother me, but I do worry about insect bites possibly causing cellulitis.
As you no doubt know Brexit did not happen and I do not think it will ever happen. I have never thought that we have a true democracy here because we have an inherited monarchy and not an elected head of state that we can get rid of.
That is all for now.
Love.
Sylvia xxxx
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Hello Susie,
Thank you for your latest post.
You seem to have a well ordered life with your book club, your theatre club etc. and I always feel that you have a good sense of humour.
Your book sounds interesting. I do not read much fiction these days.
I hope you have a good week and congratulations on losing all that weight. That is a great achievement.
Take care.
Love.
Sylvia xxxx
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Yes, as others have mentioned, turmeric may be one that supports a healthy inflammation response. There are many supplements and nutrients that can help with this. However, you may want to look into and ask your doctor about the absorption of everything you take. For example, turmeric in supplement form is often better absorbed in a hydro-soluble form that in ordinary spice form.
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Hello Sylvia,
Apologies for taking so long to reply.
I was very fit, slim and had a healthy diet, my cancer was also down to sheer bad luck.
No-one seems to have any idea as to why my apparently healthy body reacted so badly to chemotherapy. My case was discussed at every weekly multi-disciplinary team meeting. I doubt my reaction could come down to bad luck - there must have been a reason.
I had blood tests, weight check, BP check and an echo cardiogram before chemotherapy. Attending the chemotherapy unit, I did notice that some patients were overweight or morbidly obese. I guess chemotherapy couldn't be delayed beyond a certain point in many cases. I just hope that these patients were warned about the risk of surgery and chemotherapy. I wonder how they are all doing?
As you know, I had sepsis after each chemotherapy treatment and universal antibiotics were given to fight the infection as the source of the infection was never discovered. The oncology team didn't explain that I would now be a high risk for C.difficile infection . Had I realised this at the time, I would have stopped the chemotherapy. The after effects of C. difficile go on and on and are difficult to cope with or explain to people - I can't take the chance of being far from a bathroom.This impacts heavily on Michael's life too. So it seems that a healthy lifestyle is of huge benefit, but cancer and the side effects of chemotherapy can be completely random in some instances.
I absolutely agree with you, our hospitals have far too few front line staff, far too many managers . There seems to be a large and growing number of young (inexperienced?) matrons too, just another layer of management in reality. When I was a student I had a Summer job as a cleaner at Leicester Royal Infirmary there was one matron and two deputies for the entire hospital, all were in their late fifties. I appreciate that hospitals are now much bigger and this inevitably means that more staff in management positions will be needed, but never more managers than front line staff surely!
On a happier note, it's a bright sunny day in South Norfolk again - cold in the breeze though. Our cottage overlooks a meadow and the horses are galloping round it today. The rabbits are chasing each other and the male pheasants are very active stalking possible partners or picking fights with possible rivals. Even the robin is singing happily for once. He'll go back to his grumpy self once he finds a mate. Ida, one of our cats is hiding in the Ash tree, so they'd all better look out.
Take care of yourself and Raymond, especially as the weather is due to change very soon.
Love,
Gill X
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Hello Gill,
Thank you for your latest post. With reference to breast cancer, there are many risk factors that are beyond our control and I have posted some of these over the years. They include having the start of your periods very early, having a late menopause, not having had any children or having had your first child late in life, HRT treatment, environment, perhaps the birth control pill, and so on and so forth. We can be healthy, slim and eating healthily but still have things going wrong in our body of which we are unaware, such as hormonal disrupters. I feel that stress is a strong factor, whatever the experts say.
If I look at my own case, I had a late menopause, I have not had any children, I took the pill for a couple of years, and I have had a lot of stress. On diagnosis of breast cancer, I was also diagnosed with an overactive parathyroid gland and had surgery to cure it. An overactive parathyroid gland leaches calcium from the bones into the blood and certain research links this overactive gland with development of breast cancer.
We shall never really know what caused our breast cancer.
None of us knows how we are going to react to chemotherapy treatment and even if we go through it with few problems, there are always the long-term side effects with which we have to live, such as problems with the heart, lymphoedema, neuropathy, osteoporosis and who knows what else? These drugs are all toxic and I am not surprised that patients have a terrible time with them.
Breast cancer treatment is no easy journey and there are risks at all three stages, surgery, chemotherapy and radiotherapy. Some patients feel that radiotherapy is easy, especially after chemotherapy, but it is still very toxic and with side effects. My oncologist told me there was a risk of damage to the lungs and recently I was reading about radiation-induced pneumonitis and, of course, there is burning.
I suppose we just have to make our choices and hope for the best.
You have had a really awful time and I am surprised that the medical team did not stop chemotherapy. It must have been terrible to have sepsis and then C.difficile.
What is being done in helping you to recover from all this and get back to normal? Are you still on any antibiotics? These really reek havoc with the healthy bacteria in the gut and you need to be on strong probiotics, I would think, to get your gut healthy again. You can buy high dose non-dairy probiotics at Holland and Barratt. Yoghurt is a very helpful fermented food, but not dairy. As for food, the best fermented food is probably sauerkraut. You also need prebiotic food to help the probiotics. I buy such foods as apples, onions, leeks, asparagus and artichokes, to name a few.
I agree with what you say about hospitals. I think they have become too big and too bureaucratic and I do wonder about the hygiene. There are always problems with superbugs such as MRSA and C.difficile. I am sure Raymond and I picked up our nasty bug after a visit to the hospital in Exeter. That bug lasted four weeks, took another four weeks of recovery, and we are only just getting back to normal.
It sounds very nice where you and Michael live. Here in Exmouth it is quite a cold day but I can tell from the shrubs in bloom that Spring is advancing.
Take care.
Love.
Sylvia xxxx
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Hello Mary and others,
I thought I would just post the basics on some more information from Cancer Active and Chris Woollams.
There is mention of HPV, the human papillomavirus found in high levels in many cancers.
"Human papillomavirus or HPV lies behind about 70 % of cervical cancer and a disproportionate amount of publicity is given to this lower volume cancer and the use of two vaccines, but what if HPV lay behind the biggest cancers, like breast, prostate and ovarian cancer?"
"The odd thing is that HPV is found in high levels in many cancers, yet this is rarely mentioned."
"A meta-analysis reported in 2013 that there was a high prevalence of HPV-positive DNA in ovarian cancers. The prevalence was much higher in Asia than in Europe."
It also mentions that a meta-analysis in 2012 showed a prevalence of HPV of 23% overall in breast cancer. It was higher in North America and Australia than in Europe.
Both studies concluded there was strong evidence to support the link between the virus and cancer but the mechanism of action was unknown.
If you want to read more you can always go to Cancer Active and Chris Woollams.
The thread is very quiet with few posts but a lot of viewing.
I hope all is OK with you, Mary, and best wishes to all.
Sylvia xxxx
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Hello everyone,
I am posting this for those that are interested in the possible connection between an over-active parathyroid gland and breast cancer. This is not rare but under-diagnosed as parathyroid testing is not part of routine full blood tests. In my opinion it should be. I had it with no symptoms and it is a dangerous condition. Research is not sure which might come first, the breast cancer or the hyperparathyroid disease. I was told my hyperparathyroidism proceeded my breast cancer.
Best wishes.
Sylvia xxxx
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This looks like real progress for future generations.
https://www.bbc.co.uk/news/health-47886282
Susie
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This is for anyone who has any input to offer. I will be a year out of treatment this September, I had my last chemo treatment in July and my last radiation treatment in September. I feel awful in the morning, it seems every bone in my body aches along with muscle stiffness and soreness as well. Is this normal to feel this way. I do feel a bit better as the day goes on and continue to try to walk everyday. But don’t remember feeling quite like this before I was diagnosed
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I have seen people complain of post chemo aches on other boards... it is not uncommon but yours sounds bad enough that you should discuss it w you MO. There are also naturopathic things you can try (supplements, nutrition) if it is related to a chemo-damaged system that needs to be shored up.
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Hello Pkville,
My timetable is similar to yours: finished chemo in August, radio in October. I feel fine, back to normal, no aches and pains. People react so differently to everything but, as Santabarbara says, I would be asking for an appointment to discuss it in your situation.
Hope you feel better soon.
Susie
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Hello Susie,
Thank you for your link. I have printed it out and shall read it during the weekend when I have more time.
Have a good weekend.
Love.
Sylvia xxxx
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hi sylvia
I am okay, 5 more days of sling-wearing, that is one reason i havent posted much. I can use rt. hand and fingers but they tire easily and awkward while writing unless things at right height. also i have been very busy. doing spring-time things like getting lawnmowers ready to use, got someone to clear off old asparagus, i sprinkled some fertilizer and picked my first good mess of it yesterday. My flowering plants are on their own, not able to do much with them right now. I have therapy 3 times a week, i drive half an hour to that. Right now also tax-time, pay the piper. Paperwork never seems to be right the first time. By evening I am very tired, fit for not much. i guess because of healing process? Like most others here, i have some scary thoughts at times.
I have read some of Chris W., I did start taking ashwaganda a while ago hoping for some benefits. there is so much positive press about curcumin these days too. Not sure what to think about HPV, I know the vaccine is heavily pushed for young people. So are they saying it has been around a long time, thus affecting older adults as well? ? I am not even sure about how it is acquired. I did read chris's post about possibly being a cause of BC
I must close for now, off to therapy and hopefully finish this Tax process. Hope to be here more again soon. Right now most of my pain is in the small scars on my shoulder , i am supposed to rub vigorously, very sore! i am sure this will be an evolving process!
Talk soon, love, mary
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Hello Mary and everyone,
I am finishing the last part of Chris Woollams newsletter etc. This one is entitled Cancer Blog: Fat, histamines and cancer spread. This particular article is dated March 1st 2019.
If you are interested go to Cancer Active, look at this article with particular reference to the heading Antihistamines increase survival time.
Briefly, it says "At the Karolinska Institute someone noticed that women with breast cancer who co-incidentally took an anti-histamine for their allergy lived longer.
I found the article interesting, especially about a big American study which showed people with higher levels of blood fat have have more metastases and lowered survival times. It says "Take an anti-histamine, beware high levels of LDL and triglycerides."
"First, check your blood fats and never let your cholesterol and triglycerides get above the upper safe limit. In fact, keep them in the mid range if possible. We often suggest people use lycopene. There is good research that it outperforms statins without the side effects. Another strategy is to consume fresh ginger. It reduces lipid levels in the blood stream, amongst its many other benefits".
The rest of the article says that taking an anti-histamine like loratadine might be useful. Please remember I am quoting what it says in an article. This article further says that with this anti-histamine there are no oestrogen conflicts and it reduces the stickiness of cancer cells, making it more difficult for them to spread and less able to take hold in peripheral organs.
Finally, says anti-histamines are cheap over the counter medicines with few side effects.
It says, under go to, Antihistamines increase cancer survival times.
It would be useful to have some comments.
Best wishes to all.
Sylvia xxxx
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Hello everyone,
It has been a really quiet week on the thread. Please remember that we have Gill who needs your support, as well as helenlouise. I am getting the impression that most of you having finished your treatment are moving on. Please let us know if this is the case. The thread is only as good as posters make it.
I hope you all have a good weekend.
Best wishes.
Sylvia xxxx
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Hello Mary,
Thank you for your latest post. I appreciate it all the more because I understand what you are going through and also how difficult it must be to type with the hand that you do not normally use. I have that problem with vacuuming etc. when I am trying to vacuum with the non-lymphoedema arm. I can also understand how busy you are with your gardens etc. I have just finished going through all the monthly accounts here for our complex and I always find errors. Raymond and I are saying that too much of our day is spent doing all this and chores, and we have got to change our routine so that we get back to regular walking.
It is hard to know about the benefits of various herbs and spices etc. We can only do what we think and hope for the best. HPV is very common, has been around for a long time and affects many people. It will, of course, affect older people as well. I have read that it is acquired by skin to skin contact, which could mean anything. Mouth ulcers and cold sores are said to be symptoms.
Like you, I tend to feel really tired in the evening and not up to doing much.
That is about all for now. I need to take a break.
Thinking of you.
Love.
Sylvia xxxx
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Hello Sylvia,
Thank you for the tip about prebiotic food. As I still need to stay close to the bathroom I've kept away from apples, onions or anything which could make the problem worse. I'll have to rethink this. I'm no longer taking antibiotics and unless I need them to save my life, I won't be taking them again. In fact that's always been my policy. I had so many incidents of sepsis and these were countered with universal antibiotics which destroyed the good bacteria. With hindsight, I should have stopped chemotherapy, or the doctors should have called a halt. When will our doctors take a more holistic approach to their patient's wellbeing?
I've been handed back to the surgeon now. Things move very slowly and I don't have an appointment date yet. My oncology specialist nurse did tell me that she wasn't abandoning me and that I could still contact her with any problems, so I'll be in touch with her as soon as she's back from her holiday. She's been a lifeline. No aftercare other than that.
I'm wondering how Helenlouise is. You're certainly right about her needing our support at present.
Let's hope that the the reports about new treatment for triple negative cancer are accurate. If they are, then the misery of chemotherapy and it's long term after effects could soon be over.
Enjoy your weekend.
Love,
Gill X
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Hello Gill,
It was nice to hear from you and I was glad to know that you are no longer taking any antibiotics. It will no doubt take some time for your body to get back to normal after all that you have been going through. Just give yourself time and gradually you will get better. You will need to get back to a healthy gut. The prebiotics and probiotics work together to ensure a healthy gut. I take probiotics in supplement form, which I get from Holland and Barrett. They are Mega acidophilus with pectin (3 billion friendly bacteria). I take one or two a day with meals. I also make sure I have probiotics and prebiotics in my food on a daily basis, mainly plain soy unsweetened yoghurt and fresh sauerkraut for the probiotics and leeks, asparagus, artichokes (in a jar) and apples. Try to do what you can as you feel up to it. Just barely ripe bananas are supposed to be good for gastric upsets.
What is the next step in your treatment? What is the breast surgeon going to be doing?
I was wondering what you have read or heard about new treatments for triple negative breast cancer that you think will end the misery of chemotherapy.
I did see that someone had posted a link on a different thread that went to an article in the Daily Mail. I had a quick look and did not like the fact that they were describing TNBC as the deadliest of all breast cancers. I do not think this is very encouraging for patients going through treatment for it and it is all based on the fact that after standard treatment there are no long term drugs such as tamoxifen and others, which are no picnic and I am very glad I did not have to take them. I think triple positive is much more troublesome.
In the Daily Mail article there is mention of a protein NUP98 that apparently switches on genes tht help cancer cells survive chemotherapy.
It is stated that this protein can be found using a simple biopsy of breast tissue with results in 24 hours. It then goes on to say that it could be available in ten years! If it is so simple why would it take so long to be available?
If I have understood correctly, the drug for this would be taxanes! We already have these and they were readily available back in 2005 when I was diagnosed. I happen to think from what I have a read and my own side effects that the taxanes are worse than the original chemotherapy drugs such as AC and EC.
Apparently one in seven breast cancers are TNBC.
I hope you are having a good weekend. Here the weather is wild with nasty winds and it is cold.
Take care and let us hope we hear from Helenlouise soon.
Love.
Sylvia xxxx
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Hello Mary, Susie and Gill,
Thank you for your contribution to the thread this week. Your posts, along with mine, have kept us going.
Thinking of you and hope you are all having a good weekend.
Love.
Sylvia xxxx
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hi guys,
I'm still here. Only two days to go. Seeing oncologist Tuesday so will know more about how to manage the skin mets and the results of the staging scans. It has been a long week. I am now on a break from work (mid term break) for a couple of weeks so that is fortunate with all that's happening. I did read about electro chemotherapy but don't think it is available in Australia for humans. I hope you are all well. Thanks for your thoughts and wishes.
X
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Hello Helenlouise,
Thank you for popping in. I do hope that you will have a positive meeting with your oncologist on Tuesday and that you will be told how they think the skin mets should be managed.
I can imagine how awful it must be waiting to find out what is going to happen. Consultants do not seem to realise the fear and anxiety that patients experience while doing all this waiting. It is totally unacceptable.
It is good that you are on a break and not having to cope with all this on top of coping with the responsibilities and stress of work.
I have not heard about electro chemotherapy. Is it being used on animals? How is it applied?
The thread is very quiet, bordering on dead, at the moment as far as posts are concerned.
Thank you for wishing everyone well. Gill is the one that has had the most problems, has been very ill, but seems to be slowly recovering.
Let us know how you get on when you see your oncologist on Tuesday.
Love.
Sylvia xxxx
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Hello Susie,
I have read the article to the link that you posted. It all sounds very complicated and I do wonder where it will go. Again, the emphasis is on more and more drugs.
I do hope you have a good week. Are you doing anything special for the Easter weekend?
Love.
Sylvia xxxx
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Hi Helenlouise,
Hoping that your appointment with the oncologist gives you a clearer idea as to the management of your skin mets. The waiting must be difficult and frustrating when you just want to get on with the treatment.
Best wishes,
Gill X
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Hello, Sylvia,
No, nothing special for Easter. Being child-free I tend the avoid the school holidays. I do have a theatre on Saturday afternoon and may go to the British Museum on Friday.
The article may involve more drugs but they will be instead of chemotherapy. Where would we be without cancer drugs? Mostly dead, I'm guessing.
Susie
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Hello Susie,
Thank you for your post. I know what you mean about the Easter holidays. Here in Exmouth there are crowds of people at the moment and lots of children, either on holiday or from the schools here. The Exmouth Community College now known as an Academy has 2,800 pupils (11 – 18) and they are all on holiday, not to mention the primary and junior schools. The Sandy Bay resort is also open and can take up to about 18,000 people.
I understand what you mean about drugs but they will still be toxic.
It sounds as though you are going to have an enjoyable weekend.
Love.
Sylvia xxxx
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Hello Gill,
I forgot to ask you whether you knew anything about colloidal silver? I have bought a bottle just to try it out. I have read about it and decided to try some. This is what it says on the label and I bought it in my natural food store here: About This Product. The use of silver to combat germs is recorded in many cultures going back centuries. Modern research shows that silver kills numerous germs by protein deprivation. In this colloidal form, we use the best of modern technology to create a consistent, pure, stable and versatile product. It is naturally anti-bacterial, anti-viral and anti-fungal and is used in homes and hospitals world-wide.
Produced in Devon by Rivers of Health Ltd.
High stability Silver, mutli-use anti-microbial.
Not less than 250 ml.
Contents: Purified water, medical grade silver potency specification /particle size range: 2 to 8 nanometres. Silver content 10 parts per million.
I have been drinking a cap-full (the cap on the bottle).
I am doing this to try to clear my system because that bug I had took ages to clear and afterwards I have had a problem with my right eye and was told it was a stye, but although it has cleared a lot I cannot get it to clear completely.
Have you ever heard of this and how was it used? You can get it in a little spray bottle.
I do hope you have a good week.
Love.
Sylvia xxxx
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Hello Sylvia,
Michael is going into town to buy mega acidophilus with pectin. Stomach acid probably kills much of the good bacteria before it ever reaches the gut, so additional help on top of diet and probiotic yogurt is certainly needed. I can't face sauerkraut which is unfortunate as it has an excellent reputation for maintaining a healthy gut. Whist in hospital, the Doctor warned me that I may well develop colitis after the C. difficile infection and this could be the case. Even so, I'll go along the probiotic route for a few more weeks before seeking medical help which will inevitably lead to more drugs and more side effects.
Regarding advances in treatment for triple negative cancer, (also lung cancer lymphoma and melanoma), immunotherapy will almost certainly replace chemotherapy in the (I believe) near future. What I don't understand is why a treatment specifically designed to encourage the body's immune system into attacking only cancer cells, leaving healthy cells unharmed, would combine it with chemotherapy. It doesn't make sense. Immunotherapy doesn't work for everyone, so is chemotherapy an insurance at this early stage? Is Taxol to be used at a much lower dose? After your reply to my earlier post I revisited the information about immunotherapy and realised that I had overlooked the addition of chemotherapy.
I have been interested in the metaplastic cancer trial at the Houston Methodist Hospital. Human trials began in 2017 and as the drug is repurposed, the trial will only need to last for five years. It looks very promising. In mouse trials the growth of metaplastic breast cancer was retarded and even regressed in most cases. The research doctor VERY briefly mentioned the use of chemotherapy in combination with the treatment - almost as an afterthought. However, metaplastic breast cancer is known to be chemotherapy resistant in many instances. No explanation was given.
I visited the Daily Mail website and agree that the headline was very disturbing, irresponsible and completely wrong. Like you, given the choice, I'd prefer triple negative breast cancer. Out for five years and it rarely returns and no medication to take. Metaplastic is more aggressive, but it's certainly not unbeatable as many women on this website will vouch for. My oncology registrar is very optimistic as my tumour was only grade 2 and fairly slow growing - unusual as they're normally grade 3 and very fast growing. He's treated metaplastic patients before and all have survived.
It seems to be protocol here for oncologists to refer patients back to their surgeon after treatment. Not sure why, but it could be to check the scar and discuss reconstruction. I will also get my Macmillan nurse back and a mammogram on the right side and an ultrasound on the left will be organised. Reconstruction isn't something that I'd consider as it's such a lengthy surgery and I don't want to push my luck.
Thank you for all the information and support you give to me and so many others on the thread.
Hoping the weather down your way improves before Easter.
Love,
Gill X
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I've seen my surgeon a couple of times since finishing treatment (such a lovely man). I don't know about other parts of the country, but in London Breast Clinics are run by the surgeons so they are our first and last ports of call.
I too get annoyed when I see newspaper reports about how TNBC is 'especially lethal' or any other such scare-mongering blether.
Anyone else watching Game of Thrones?
Susie
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Incidentally, if anyone else finds that their big toes feel a bit rough after Taxanes, I recommend these:
https://smile.amazon.co.uk/gp/product/B01EJLXRUU/r...=ppx_yo_dt_b_asin_title_o01_s00?ie=UTF8&psc=1
They keep the big toe separate from the others. Mine are rough at the side and these stop them rubbing against the 2nd toe.
Susie
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Hi Mary,
As typing is so difficult for you, please don't even consider replying to this.
I just dropped by to wish you a peaceful and blessed Holy Week. I expect you'll have had plenty to do at Church but I hope you're also finding time to rest and heal.
Wishing you a speedy recovery,
Gill X
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