Calling all triple negative breast cancer patients in the UK
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Hello viewfinder,
Thank you for your last post. I know that term excision is used, so it seems to me that re-excision is just another way of saying that they are re-doing the lumpectomy.
I do hope all goes well with your busy weekend.
Love.
Sylvia xxxx
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Hello adagio,
Thank you for your recent post. I was interested to know that you had requested and obtained permission for a bone density scan.
I was not surprised to read that you got the rundown on drugs for osteoporosis. That is the name of the game and it is not one I have ever played. Bisphosphonates are always being pushed and if there are objections up pops another possible drug! I was not surprised to read that the drug Prolia popped up. This is the brand name for the monoclonal antibody drug denosumab. If I were you I would have a careful study of this, as all drugs have side effects. This drug causes joint and muscle pain in arms and legs.
Are you having particular problems that you feel the need to have a bone density scan? I decided sometime ago that I would treat my osteoporosis with food and that I did not want any scans that exposed me to radiation, even low doses, and that the numbers that come up do not really mean much. These decisions are very individual. I do take 4,000 IU of vitamin D daily and try to take it with calcium rich food. From time to time I take just one Solgar calcium plus the other things needed such as magnesium and vitamin K that are included in that one tablet.
It sounds as though you are doing some interesting reading.
I do hope your husband will continue to improve. It must be awful for him to be suffering a lot of pain, numbness and tingling in his left hand and arm and has just minimal use of it.
Sending love and best wishes to you and your husband.
Love.
Sylvia xxxx
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Hello Flora,
I was sorry to read that you are still suffering with the nasty bug that seems to have hit a lot of people. Were you told that it was flu? Raymond and I were told that it was a viral infection but not flu. It is now five weeks that it all started and it is only this past week that we have felt more or less normal. Raymond did have a flu jab but I did not. Invariably the flu jab covers the wrong strains!
Wishing you and your family all the very best.
Love.
Sylvia xxxx
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Hello Mary,
I thought I would let you know that I have just started to work my way through the March edition of What Doctors Don't Tell You.
I was very interested in the first page, page 3, the editorial written by by Lynne McTaggart. I agree with all she said about the Walk the Walk Moonwalk in May in the UK and November in New York. I cannot think of anything more humiliating than women walking around at midnight in pink bras.
I agree with what she said about the big charities being mostly interested in more and more expensive chemotherapy drugs.
I agree with what she said about an alternative to a Moonwalk. "A midnight boycott march against prescribed female hormones of every variety – the Pill and HRT." I also agree with a boycott on breast implants because of the dangers of silicone.
I agree with what she says about keeping away from processed foods and Free From foods, as well as "natural flavours".
What did you think of this editorial? It has a lot more in it than what I have been able to print here.
I read the article entitled The anti-cancer powerhouses – Noted food researcher and advocate Ocean Robbins reveals the three main foods that prevent breast cancer and more – mushrooms, cruciferous vegetables and celery. A lot of this is already known but I thought this was good in-depth detailed research.
It is not to be taken literally because, as I have said many times, breast cancer and others are all multi-causal, so I would say that these vegetables are all part of a healthy diet and probably help to keep cancer at bay.
The other article I read was about coffee. I did like the big diagram of a cup of coffee and I liked the heading Healthuccino? Is coffee the espresso route to health – or are the claims too little, too latte? I liked the division of the cup of coffee and the two titles – The health benefits of coffee – The health dangers of coffee. I am not a coffee drinker but Raymond loves coffee. I do not take notice of any sensational claims but I did laugh at the following "Drink one cup of coffee a day, and your risk of dying from any of the big killers – such as heart disease or cancer – drops by 12%; drink three cups and it drops by 18%".
I hope you have a nice weekend.
Love.
Sylvia xxxx
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HI, viewfinder
Thanks for the info about the re-excision. Best wishes to your sister, and I hope she will get clear margins this next time.
Love, Mary
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HI, Flora
Thanks for well-wishes on my surgery, I dread it, or rather I dread the long recovery. As you are finding out with the flu, some things take a while to get over with. It does seem that you have been down with it for quite a while, that is what it does to me when I succumb to it. The worst symptoms seem to be gone in about a week to 10 days, but then one is left with extreme fatigue and sometimes coughing for weeks.
"Call the MIdwife" sounds very entertaining, I'm glad you found some diversion through these long days you have had to endure.
I hope Spring is around the corner and you will feel well again soon!
Love, Mary
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Hi, Adagio
The book you are reading does sound very interesting, I looked it up on Amazon and read a bit more about it. I am interested too in the repurposing of old cheap drugs that have fewer side effects than many of the newer drugs. I might order this book, a very good friend of my sis-in-law has recently been diagnosed with Stage 4 Lung Cancer, she is just starting with testing and seeing what kind of treatments will work on her, it might be something of value to her. After I have looked at it, that is!
I am glad your husband continues to improve, however slowly. I am interested to hear the results of the MRI scan he had. In my brother's case, the docs said that the area in the spinal cord that was causing the problem was badly bruised, and would take time to heal.
Best wishes to you both, and to all for a better Spring,
Love, Mary
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Hi, Sylvia
I think the latest edition of WDDTY could have been titled "The Benefits of Vitamin D". It is mentioned so often in this issue, and rightly so if it is the powerhouse that it seems to be. I don't know what my Vitamin D level was at the time I was diagnosed with TNBC, but later it was tested and my level was low. I began taking 5000 IU daily and next time I was tested I was normal, but only slightly above normal. So I still take it, I take 2500 to 5000 IU daily, I have Solgar D3 5000, and I also have some Turmeric that includes Vitamin D that I am finishing off. Sort of a vitamin cocktail. Our winters are usually quite gloomy, from November through February, and this winter has been doubly so. When it has been sunny, it is usually too cold to be outside very long, with a few exceptions. It's either supplement or do without this necessary vitamin.
Here I would like to add that my acupuncture doc has been selling a line of supplements since I have been going there. He does not push it, but offers advice if I ask. His line of supplements is from Australia, he says that is one of the only countries that has regulations over the ingredients in supplements so people know exactly what they are buying. I think that would be very valuable to know.
I agree with you about the editorial comments in the latest issue re the silliness of women parading at mignight in pink bras. I suppose it would raise awareness!
On Page 25 is another piece called "The future of Healthcare", the author asks the question: what if we would keep people healthy rather than manage sickness? What if the individual could be at the center of the system, and everyone shared a holistic view of human health? He brings up the NHS, and thinks if it could be fixed it could be a system worth copying. He also says it is now crumbling. In my opinion, this all sounds both wonderful and at the same time rather utopian. How do you magically get all people to take optimum care of their health? It would have to be such a takeover of everyone's daily life as to be a gargantuan task. To what ends will the establishment go to make sure everyone complies with their edicts? Anyway, I would be interested to hear what you think of this article.
I am always glad to read an article that says coffee is good for us, I bet Raymond is too. I use Puroast Coffee, Organic House Blend. It is advertised as having 70% less acid than other coffees, and 7 times more antioxidants than Green Tea. I like it very much. Like you, I find it humerous when claims are made such as drink one cup of coffee a day and chances of dying from any of the big killers drops by 12% and drink 3 cups it drops by 18%. How on earth do they get data for these claims, and is there anyone who will rush out and start drinking coffee for these reasons? At any rate, I have had morning coffee for most of my life, and hope to be able to continue to do so.
I was impressed with how Ocean Robbins explained the whys and wherefores of the goodness of cruciferous vegetables and mushroom for our health. I agree, I think we all know these things are good for us, but it's nice to hear how they work.
I will have to close for now, there is more to this issue, hopefully we can get to it later.
Once I have surgery my posting will be left-handed for some time ugh.
Talk to you later, love,
Mary
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Hello Sylvia and all
I am down with flu and having high temperature and chest congestion. I think it is because of change of weather . Everything tastes horrible and it's not nice to be in bed all day.
Why do people sympathies with you when you have cancer. My doctor told me that it's like any other disease like diabetes etc and you have to accept it. He was very understanding but people think otherwise. All this makes me less confident but I guess they don't understand that they are doing more harm than good.
Love
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HI, Jags
I am so sorry you are down with the flu, and have fever and chest congestion. It seems almost everyone on this thread has been sick over the last month or two. I hope you recover quickly.
I'm not sure how to answer your question, "Why do people symphathize with you when you have cancer?" Maybe because everyone has heard sad cancer stories where people die quickly and they think all cancers are the same. I myself think that diabetes is a very bad disease too, it affects every system in the body and has to be taken care of strictly to have a good outcome. I hope you don't let what people say bother you too much, most people mean well and just don't quite know what to say. Having a cancer diagnosis is definitely a life-changer for all of us.
Thank you for wishing me well on my surgery, I have been trying to think ahead about what I will need. I am now tired of worrying about it and just want to get on with it. Soon enough, I suppose!
Take care of yourself, Jags.
Love, Mary
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You know, Jags56, all my long life I've heard about and known people with cancer. Felt badly for them then went on my way not giving it much after thought. This is to my shame.
Then, at age 74, I was diagnosed with breast cancer....about three months later my 70 year old sister was diagnosed with triple negative breast cancer and has to go through a whole lot more treatment (and side effects) than I.
What I'm trying to say is that I wish I understood better earlier in life to be more sympathetic, to offer more help if needed; to call the person and ask how she or he were doing.
If people express sympathy graciously accept it and try not to let it bother you. I don't want pity, but do appreciate understanding.
Let me add this. In 1987, my oldest daughter, aged 18, was killed instantly by a habitually reckless driver. You wouldn't believe some of the stupid things some people said to me. But I came to understand that they were uncomfortable, realizing my family and I experienced what they feared most. I think people feel the same about cancer. I learned to be gracious because they were well-intentioned, albeit awkwardly. I think that's what we cancer patients need to try to do.
Hope you feel better soon!
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Hello Jags,
I was sorry to read that you are down with flu and not feeling well. It looks as though it is a nasty year for viral and bacterial infections. All you can do is rest and keep having warm drinks. I find lemon and ginger tea to be very beneficial.
What you say about cancer is true and your doctor is right in one way to say that it is the same as any other disease. We have to remember that for a very long time cancer was a hush hush kind of disease and people would almost just whisper the C word. The thing about cancer is that it is very unpredictable, the treatment is very harsh and even when you are NED you do not know when it is going to strike again.
Diabetes is indeed a horrible disease with horrible consequences but it can be treated more easily and can be cured through such things as watching what you eat and losing weight. If you do not take care of yourself you can have all kinds of eye problems, including going blind, limb loss with feet and/or legs having to be removed. Diabetes is the kind of disease where a patient can do so much to help himself or herself.
Unfortunately there are so many people who just want to swallow a pill in the hope that it will cure everything!
Wishing you a rapid recovery.
Love.
Sylvia xxxx
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I agree with Jags. There are so many diseases more horrible than cancer (though it depends a lot where it is) -- I fear Alzheimer's, which both my mother and grandmother suffered from; Parkinson's is probably worse as it affects both body and mind; Motor Neurone Disease; Multiple Sclerosis; I hate the idea of having a stroke (unless it's instantly fatal); a woman in my Pilates class has a 28-year-old son who has just suffered a brain haemorrhage and has had two operations so far. A friend has recently had a tumour removed from her brain. It was benign but who wants a surgeon messing about in their brain?!
And yet somehow it's only the word cancer seems to put the fear of God into people.
Susie
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Hello Mary,
I agree with you about how often vitamin D is mentioned but it is so important and not easy to get in your diet. I have read many times that it is a hormone rather than a vitamin. We have to remember that vitamin D is a fat-soluble vitamin and so it is important to take it with some fat-containing food in order to absorb it. I usually have it with an avocado, some organic eggs, or some nuts. As for vitamins, I did get concerned about fillers in them and I do try to keep all supplements to a minimum. I understand what you mean about your acupuncture doctor and his supplements. About a month ago I was talking to one of the assistants in the natural food store, Mother Earth, where I go in Exmouth. She told me that the two purest brands of supplements that she sells are Viridian and Terra Nova. I looked into them and they are excellent but very expensive for small numbers of them, so they would not last long. I have kept to my two supplements from Solgar. They are Bone Support, which has the complete formula in one supplement to help your bones. I also buy vitamin D3 soft gel 4,000 IU by Solgar. I used to buy the 5,000 IU one that you take but it became unavailable in the UK sometime ago. I also take a probiotic and a high strength soft gel garlic supplement, which I buy in Holland and Barratt here. On the whole I just try to get everything from nutrition.
I have just the article entitled The future of healthcare on page 25, by Robert Verkerk, PhD. I do agree that the key is to work with nature and not against it. I do agree with everything he says in his blueprint for a different way of managing health.
I do not very much like a health system which just treats symptoms, does not pursue causes and treats every ill with a pill. I think cocktails of pills are probably making patients worse.
I think that the 1945 Attlee Labour Government was the best one we have ever had and that the 1948 National Health Act was one of our finest achievements. It is now a shadow of its former self and I shall not be surprised if it does not survive. It has been abused on all sides and England especially is so over populated that the system cannot be sustained.
I think people should take more responsibility for their health and I think this has to begin with good nutrition and I do not know how you educate people to stop eating junk and processed foods. The supermarkets are leading all this junk and I do not know how they can be stopped. Poor nutrition is getting worse and worse. I cannot believe people still continue to smoke. There is no excuse now. There is also far too much alcohol consumption, even though people know it is an addictive drug.
That is about all for now. We are having some kind of storm here but is nothing to what you get in the US.
I hope you will get to see the channel Keep it Country, especially the programmes that have Down Memory Lane for the 1950s, 60s and 70s. It is on 8 pm on Sundays and 10 pm on Tuesdays, but in the week I have discovered that is doing repeats that seem to go way back at 11 am most weekdays. I do not know what channels you can get it on in the US, if at all. You may have to go to the internet.
Take care.
Love.
Sylvia xxxx
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Hello Susie,
I do agree with what you say. I also fear Alzheimer's or any form of dementia. It is awful to see people suffering from it. I also think Parkinson's disease, Motor Neurone Disease and Multiple Sclerosis are worse than anything you can imagine. I had a cousin die of Motor Neurone Disease and I also had a friend who was diagnosed with it and went to Switzerland to Dignitas to drink the poison. I had a friend here with MS whom I used to help a lot and it was heart-breaking to watch him. I could not have anyone digging into my brain.
I also worry about strokes and would hope if I had one that it would kill me outright.
Today I have heard of two people in my block here who have macular degeneration of the eyes. That is scary.
I feel that ageing is a very difficult time of life and you never know what is just around the corner.
I do hope all is well with you, Susie. I thought of you some weeks ago when I saw a snippet of a play that is on in London, called The Price by Arthur Miller. It stars David Suchet. It is probably not very politically correct in today's world. Have you seen it?
Keep well.
Love.
Sylvia xxxx
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Hello, Sylvia,
No I decided to give The Price a miss as I'm not a big Arthur Miller fan, though I do like David Suchet. I saw a terrific play at The Bridge on Saturday -- Alys Always starring Joanne Froggatt and Robert Glenister. Andrew Marr interviewed them about it on his programme yesterday.
Susie
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Hi, all
I agree, Alzheimer's is among the worst, and since we are on this cheery subject one of my brothers died of a very bad rare disease, Cruetzfeld-Jacob Syndrome. It is always fatal, and it eats the brain away quite quickly, unlike Alzheimer's. Every day a new symptom, from his first complaint to death was 2 months, and it was bad. The only blessing was he slipped into a comatose state for the last two weeks. The docs could not diagnose until the last week. I wonder if the Motor-Neuron disease Sylvia mentioned is something the same? There are so many strange things out there.
Yes, there are worse things than some kinds of cancer, and there are also worse things than death.
My mother-in-law used to say "Getting old is not for sissies!" She lived till 93, and was very crippled by rheumatoid arthritis for almost 30 years. She was indomitable, that's the word I always think of for her.
Not that anyone here is old! We are all young, and/or youngish and/or young at heart!
Mary
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HI, viewfinder
I am very sorry you lost your daughter so suddenly when she was so young. My sincere condolences. Also thank you for explaining, to Jags and to all of us, how to handle the things people say, usually in a well-meaning way.
Talk soon, love
Mary
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If anyone's hair is growing back a bit thin, this might be worth trying:
https://www.amazon.co.uk/gp/product/B07L9N3G5L
It's quite pricey (I got mine free from Amazon for review). I've been using it for a few days and will report how I get on. It makes my scalp feel nice and cool on top (sides and back are downright bushy but the top feels thin).
Susie
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Hello
Thank you viewfinder for explaining your point of view. I am sorry about your daughter and feel for you . I know people do get confused and probably mean well or maybe I have become more sensitive and selfish.
Thanks again Sylvia Mary and all for your wishes .
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Hello everyone,
It has been a very quiet week indeed on the thread. We have had about eleven posts and most of them were on Monday. I do hope everything is alright with everyone.
I have noticed that we have not heard from Gill and so I am hoping that she is progressing after her last chemotherapy and that she has not been made ill again. Just to let you know, Gill, that I am thinking of you.
Thank you Susie, Mary and Jags for your contribution this week.
Hello to adagio, Nancy53, Val, Kath, HelenLouise, Cocooncat, Marias, Hanieh and any others I may have missed. If you have decided to move on please let us know.
Last night at 9 pm on Radio 4 I was listening to a programme Inside Science, when someone, a scientist, was talking about all the rubbish that is passing for information on the internet and mentioned a website that is being formed by experts to verify the truth about information on the internet. The website is metafact.io and you can go on and ask any questions about health and science and hopefully experts will be found to give their opinions. There is a whole list of questions that have already been asked and a percentage is put up about whether the information is true or false. I found it quite interesting looking at whether the experts on the whole think they are true or false. If you can, have a look at this website and see what you think of some of the questions and whether the percentage is for true or false.
I do not know how long this website has been functioning and whether you already know about it.
I was interested in looking up nano and colloidal silver because yesterday someone was asking me how I was and gave me a brochure about it. The person told me that had I drunk some of this colloidal silver mixture it would have got rid of my viral infection very quickly.
That is all for now. Wishing everyone a good weekend.
Love.
Sylvia xxxx
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Still here Sylvia, will give update ASAP.
Thank you for always including us all X X
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Hello Sylvia and everyone else,
I do still drop in and read this forum every few days.
I also wanted to send my best wishes to Gill, who must have started her last Paclitaxol chemotherapy now. I do hope you're not feeling too horrible.
My mother has now had 11 infusions of the Paclitaxol, she is having a week off and then her last one in a fortnight's time. Then she has to have regular Vitamin D injections in order to be eligible for the biphosphonate infusion.
We are both rather wondering how to go on with our lives once she is out of active treatment, without worrying about every single twinge she has. We have not yet heard about the frequency of follow-up appointments-this will all be discussed at her next oncology appointment in a few weeks' time.
Any comments from those on this thread re: how to get through the day without worrying about recurrence would be greatly appreciated.
Also, is anyone taking baby aspirin as a preventative agains recurrence? Dr L, my mother's oncologist, said the jury was still out on whether daily aspirin can reduce your chances of recurrence. When my mother asked if she(Dr L) would take any for this reason, Dr L said "she might". Dr L much more definitively said that metformin was not something she would take for similar reasons. We didn't really press her about beta blockers( a few studies have suggested this is another drug that could be repurposed to reduce the chance of recurrence), as my mum has to take them anyway for her atrial fibrillation. Once she has finished chemo, my mum is going to find out whether she still has the AFib.
I wish you all the best for your surgery, Mary, and your husband's recovery, adagio.
Have a lovely weekend
Flora x
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My thoughts and prayers to Gill, and others and their families who are going though difficult times!
Sylvia, the metafact.io website is fascinating, to say the least. Thanks for bringing it to our attention.
I haven't decided to move on but have been very busy doing social media work for my sister: editing hundreds of photos, creating dozens of graphics, then posting them to Facebook and Instagram; responding to comments from attendees.
I've recently been asked to do work on a website for a local organization and will decide after I find out what they want me to do and the amount of time. I'm really trying to get out and about more to focus my mind on other things....been almost impossible with the many doctor visits and will soon be starting physical therapy. Needless to say, my participation in two very active forums will be less than usual, but I do check in most every day.
I thought you would enjoy a collage from the show. Every year they have a special evening event for attendees. This year they had an Elvis impersonator. The Board recognized my sister's many contributions to the organization and Elvis sang "The Wonder Of You" in tribute to her. With tears in my eyes, I watched a video of the entire tribute. I'm very proud of my sister!
btw, she has the BRAC1 mutation, so my Oncologist wants me the genetic blood test next week. I went to get it yesterday but, DUH, the interviewer never told the office (or me) if it was covered by my insurance.
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Hello Flora,
I am taking part in a five-year double-blind trial which will hopefully answer the aspirin question once and for all. I know that's not much help at the moment. I was inclined to try taking it until recruited to the trial. Now I don't know if I am taking it or not!
You're bound to fret a bit about every little thing. My breast nurse says always ask if you're worried but I shall employ the same system I've used all my life when it comes to my health -- give it a few days to see if it goes away of its own accord (does not apply to chest pains, obviously!).
Best wishes to your mum.
Susie
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Hello Helenlouise,
Thank you for responding and I look forward to hearing from you when you have the time.
Keep well.
Love.
Sylvia xxxx
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Hello Flora,
Thank you for popping in. we are always glad to hear from you.
Thank you for bringing us up-to-date with your mother's treatment. I am sure she will be glad when her paclitaxel chemotherapy treatment comes to an end.
I do hope she will be alright with the bisphosphonate infusion. Is this part of standard treatment now?
You will find that you and your mother will gradually settle down to life after standard treatment. It may take a little time but it does happen. I do not know whether the after treatment check ups follow the same pattern as I had. I started with check ups every three months, alternating between the oncologist and the breast cancer surgeon. These were just physical check ups. After two years these check ups changed to check ups every six months, alternating once again. After five years I was discharged from the breast cancer consultant but continued for another five years with the oncologist one a year and then I was discharged.
During those times I lived my life normally and did not think that much about breast cancer, except when the check ups came due and then I felt apprehensive. I never had any problems and felt a great sense of relief after each check up.
The further you get from the cancer journey the less it occupies your mind and is just in a small corner of it.
It is important not to let fear of recurrence take over your mind. It is something that may never happen and if you are doing all that you can to keep healthy, that is all you can do. We all know about the importance of good nutrition and what we should and should not be eating, as well as the importance of physical and mental exercise and avoiding negative stress.
I do not take any aspirin or metformin as I am not in favour of taking drugs to prevent cancer. I do not think there is a magic bullet either to cure or prevent breast cancer. I do not believe in repurposed drugs at all. I think it is just a way of making money. I cannot see how beta blockers would reduce the chance of recurrence.
As I have said many times, I have always been positive about being negative and I was so happy after treatment to be able to do my own thing and build up my immune system through good nutrition and keeping active.
Please keep us posted about your mother's atrial fibrillation.
I do hope you are feeling much better now.
Love.
Sylvia xxxx
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Hello viewfinder,
Thank you for your most interesting post. I shall answer tomorrow.
Love.
Sylvia xxxx
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Maryna - thinking of you as you recover - hope your pain is manageable. Warm thoughts and prayers coming your way.
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Hello viewfinder,
I was glad to know that you found the metafact website fascinating. I thought it was a good idea to be able to ask questions and to get some expert answers and opinions. We all know that we have to be vigilant with what we read on the internet and I thought this was a measured way of looking for some kind of consensus.
I was interested to know that you have been asked to do some work on a website and I can understand that you want more information and also to know about how much time it is likely to take.
I think we all need to give ourselves more leisure time and I can understand how you want to get out and about more and focus on other things. Especially with breast cancer, we must not let it possess us and doctors' visits can take up a lot of time.
I do understand that being on this forum can take up a lot of time and that again we must not let it possess us.
Thank you so much for posting the collage. I do love Elvis Presley and I think the song The Wonder Of You is really beautiful.
I was interested to read that your sister has the BRCA1 mutation and all the more so given her age at diagnosis of breast cancer. It just shows that you cannot generalise with these things. I was definitely told, when I arranged an appointment with a genetic nurse at my hospital that she would not refer me to a genetic consultant because of the age at which I was diagnosed. She told me that generally women with the BRCA1 or BRCA2 mutation are usually quite young at diagnosis. At the time to go privately cost £3,000. I am glad I did not have the genetic test because I would have seen it as just something else about which to worry. It would have also been a worry to my brother who has three daughters. We have to remember that the males can carry it too and pass it on.
I have a friend whose sister had breast cancer and she had the faulty gene. My friend was tested and has it too. Of her two brothers one has it and one does not. Interestingly the one who does not have it has a different blood group to the brother and two sisters!
Do you think you will have the genetic test? I seem to remember reading sometime ago that Ashkenazi Jewish people are vulnerable to these faulty genes, but I do not know why.
Take care and have a good weekend.
Love.
Sylvia xxxx
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