Calling all triple negative breast cancer patients in the UK
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Hi Mary,
Always good to hear how things are going down your way. So, you very nearly had snow? South Norfolk hasn't had so much as a snowflake or even a proper Winter covering of ice. Both cats have decided to stay in and sleep throughout the day and night, just in case. This lack of normal Winter weather is particularly annoying as Michael has bought me a lovely warm padded coat with a fur-lined hood, (fake fur), as an early birthday present. My daughter asked if 'dad' had been coerced into buying the coat. She knows me too well. Like Sylvia, I'm getting worn down by all the dull wet days. The garden is a mess too, a few inches of snow would cover this nicely.
I've given up on American politics. The impeachment process has gone on far too long and I've lost interest. Politics seems to be have gone stale in so many parts of the world.
My belated new year resolution is not to spend so much as I did last year. With this in mind I've gone through all last year's bank statements and put together a monthly spending plan. I've also made a list all the rooms that need painting and all the places I want to visit this year. All this will go out of the window once the warmer weather arrives, but for now I'm organised and feeling very pleased with myself.
Have a good weekend.
Much love,
Gill xxx
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Hello Gill
Thank you for your latest post. As for Hanieh, it is very mysterious. If Hanieh had posted on a different site, why would KUNALGOLDY have replied to her on our thread where she has not posted for almost a year and KUNALGOLDY only posted once, that was removed and then put back. There has been no reply to my private message to the moderators asking what was happening.
I have no faith in Matthew Hancock as Health Secretary and I do not understand how he got this position. He is too much of a Yes Man and a nodding dog! Why not put a medical doctor in charge of Health? How about Chris Woollams!?
I was glad to read that you have no side effects from your zoledronic acid infusion that you had yesterday. It is always a nuisance finding veins. Fortunately this infusion has a long duration of action so that it can be used very infrequently. As you know, I am not a fan of bisphosphonates. I know that bone pain, fever, fatigue, sickness and vomiting can be common side effects of zoledronic acid, so I am glad to know that you are alright. There are quite a few rare side effect so look out for anything happening that is not usual for you. As least you can now relax from all that for some months now.
I am still reading through that first email from Cancer Active. I have four different papers on the Mediterranean Diet, so I do recommend clicking on some of the sections other than the main email. I have the following:
The Mediterranean Diet probably the healthiest in the World.
Heart risk reduced by switching to a Mediterranean Diet, and it says that several research studies in 2018 and 2019 have shown that the colourful Mediterranean/Rainbow Diet is capable of reducing heart attack risk, blood pressure and stroke by a significant factor.
The third paper is The Mediterranean Diet alters microbiome to lower breast cancer risk. This makes very interesting reading and there is so much information now about the importance of probiotics and prebiotics. I do try to have fermented foods in my diet such as sauerkraut, proper soy yoghurt and Kombucha drinks. For prebiotics I get aa mixture of red onions, leeks, asparagus and apples.
The fourth paper I have been reading is entitled The Mediterranean Diet is the best for reducing and treating type 2 diabetes.
I do hope some of the group will read thes. We do need to help ourselves.
I do find George Orwell and his books very interesting. I did not manage to listen to all of the 15 minute broadcasts about Orwell this past week and managed only one of the dramas in the afternoon, but I may try to catch up on their website. I never seem to have enough time.
I think much of his work is relevant to the way we are living in 2020. I wonder what he would make of England if he came back now? I saw that someone was asking recently whether Orwell would have a smartphone if he were alive today. Having listened to some of the broadcasts I was asking myself whether he would have voted for Brexit!?!?
I see that you and Mary would like some snow. I cannot say I would. It is nice at first but looks awful very quickly and in this country it would create chaos!
I do hope that all is well with Helenlouise and Kath. I know that the bush fires are still raging, but we do not get much news. I wonder what adagio thinks of Harry and Megan out on Vancouver Island. I remember going there when I lived in Canada and found it very peaceful.
I wonder how Mary and Maryjv are coping with the side show that is the impeachment process.
Sending best wishes to Jags56, Marias, 53Nancy and our very dear Hanieh.
I hope you and yours have a good weekend and I hope we do not get the rain that is forecast.
Love.
Sylvia xxxx
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Hi Sylvia, Gill and all
Finally I am back, and sure enough when I'm somewhat ready to comment on Chris's post, there is another one from him in my inbox!
From his first post: I was particularly interested in reading about the 7 most important supplements that fight TNBC. These are: Vitamin D, Indole 3 Carbinol, Curcumin, Green Tea, Blueberries, rose hips, and Luteolin. There is also a list of more things that help ward off problems with TNBC, but these have special emphasis. I do eat/take as supplement all of these things except for Luteolin, I am going to look that up.
I am also always interested in the use of old drugs to treat new problems, anything that is not chemotherapy has my vote, if it works. Chris mentions the use of Dipyridamole, or DIP. This is a safe and widely prrescribed drug used in ischemic disorders where the blood supply is limited to tissues-it inhibits thrombus formation by short-term vasodilation. It is usually being used for cancer treatment by accompanying chemotherapy, and making it work better.
It is also being tried with many other cancers.
Another repurposed drug is Itraconazole is a broad-spectrum antifungal drug shown in various research studies to increase cancer-free progression, increase cancer survival and reduce cancer-free progression. This drug is known to be safe in humans.
I also read the part of the post relating to red meat may increase risk of breast cancer. My take on it is that it seems to be aimed at Hormone-positive BCs, because of the hormones given to cows. But does that mean that organically raised cattle's meat is safe, according to the experts, and especially for us because we are TNBC? I do eat red meat occasionally, from deer and cows. I find it very nice and satiating after my usual meals that are very heavy on the vegetables and with some fish.
This reminds me of something that has interested me because of the subject, and it is in another part of his post. This post says that HRT raises the instance of BC by a third. Is this for Hormone-positive cancers, that is what they seem to intimate. What about us, the Hormone-negative? It has been suggested to me that I use a vaginal suppository, to battle vaginal dryness and atrophy, it is a non-hormonal treatment but then turns into hormone when in the body. This has been said to be safe for women who have had BC. But the packaging says "Not for anyone who has had, has, or think they may have BC." What to believe? My gynecologist has recommended it, and I asked my oncologist, and she says yes, it is fine for me to use because I didn't have Hormone-positive BC. But then my question is, where is the guarantee that I wouldn't get a hormone-positve BC? Anyway, the product is called IMVEXXY, if you want to look it up and tell me what you think. At the moment, I am afraid to go forward with it.
I have to stop for now, and will be back later to talk to both of you about the weather!!
Love, Mary
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Since my treatment finished in April 2013, I have felt very well - but the past few weeks have not been great for me - coughing, short of breath, chest tightness - I have a doctor's appointment today - I am very anxious to say the least. I got a head start by going to a walk in clinic yesterday and the doctor there ordered a chest x-ray - so that is done, and hopefully I will find out something more today. I did have a bad cold over Christmas, but a slight tightness in the chest was apparent when I was walking uphill a week or so before that - I did not give it too much attention really. I will keep you all informed .
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Hello friends
This is to say that I am fine. Life is moving on. I am keeping myself busy . I enjoy doing housework and socializing. Recently I visited Shimla (hill station). I wanted to enjoy the snow .
Love
Jags56
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Hi Adagio,
I can understand your anxiety and I'm glad you haven't wasted any time having your symptoms checked. Let us know how your doctor's appointment goes. Everyone here will be hoping that all is normal and the breathlessness /tight chest is nothing more than a Winter virus. Will you be asking for your heart to be checked out as well as your lungs?
Thinking about you,
Gill xxx
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Hello Jags,
Glad to hear that life is moving on and you're happy. I can't claim to enjoy housework but I do get a sense of satisfaction when it's all done. I've just been looking at some pictures of the heavy snowfall in Shimla during 2018. People seem to be enjoying it and I envy you the opportunity to see some 'real' snow. We haven't had so much as a snowflake here.
Take good care of yourself.
Love,
Gill xxx
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Hello Sylvia,
Well, we haven't heard anything more from KUNALGOLDY so her post may well remain a mystery. I just hope that Hanieh is safe during all the recent turmoil in Iran.
Your idea of a qualified medic being in charge of the NHS instead of Matthew Hancock wouldn't do at all. The whole point seems to be to hide the real state of the NHS, make empty promises and keep us in the dark about the increased outsourcing /selling off of services to 'for profit' organisations.
The Mediterranean diet is healthy all round and I have absolutely no idea why people aren't taking this on board. What is it about pizzas, chips and McDonald's burgers that makes them so addictive that some children - and adults- eat them on a daily basis? This sort of foods isn't cheap, it's just lazy. My daughter has only ever fed her children on fresh healthy food, plenty of fruit and vegetables, rice lentils, wholegrains, chicken etc. No fizzy drinks and chocolate or cake is a rare treat. Difficulties will no doubt arise once they are old enough for school and become more aware of what other children are allowed to eat.
You will have seen adagio's post. She must be very worried and, as we all know, waiting for results is very difficult to deal with. The worry of breast cancer reappearing somewhere else never really goes away.
I wonder how Marias and Helenlouise are? They seemed to be coping well when they last posted.
As you know, my hair has grown back, not too bad on the top and at the back, but very thin and non-existent in patches at the side of my head. There is a site, 'A Head of Our Time' with stories from women who suffered permanent hair loss after chemotherapy with docetaxel. Apparently when docetaxel is used in combination with cyclophosphamide, as mine was, it's even more likely to cause permanent alopecia. I found it useful to read through individual accounts of how women were dealing with this unexpected and devastating side effect. There are photos which made me grateful that I do, at least, have most of my hair even though my very thick healthy hair has gone forever. I'm not impressed that oncologists have known about this for years, yet keep quiet. Paxlitaxel is equally effective, comparable in cost and does not cause permanent alopecia, why isn't it available to us all? Informed consent has become meaningless. I'm afraid that people who comment on my hair by saying 'well, at least you're still alive', are not being helpful!
Weather here is cold but sunny, however there is a small chance of snow in Norfolk and Suffolk in a few days time.
Keep warm in Exmouth.
Much love,
Gill xxx
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hi Adagio
Here's hoping for good results today when you see the doc, good results being that you have a cold, or something else that is just annoying.
I am sending positive thoughts your way, talk to you soon.
Love Mary
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Adagio-keeping you in my thoughts and prayers 🙏
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Thanks everyone. The chest x-ray shows area of opacity on the left lung so the next step is a CT scan with contrast - this is being done tomorrow. I had numerous blood tests done today and an ECG - I am also going for a stress ECG next week. I am doing lots of coughing and my appetite is not great. Thanks so much for all the good wishes - I appreciate the support a great deal.
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hi everyone
Sitting by the pool to try and get cool! 43 Celsius here today which is about 116 Fahrenheit. More heat expected so it sounds really strange to hear u talk about snow! On the countdown for holidays. 67 days and counting down! Off on a Mediterranean cruise then London for a fortnight. Can’t wait. My poor labby is so hot he is beside himself! Stay well everyone
Love Kath
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Hi Adagio,
Just flicking through which I do every few weeks and happened to see your last post.
When Liz was first diagnosed with Triple Negative the surgeon and a high up cancer nurse told us that there was one positive to being triple negative and that was it very rarely comes back after 5 years have past. The surgeon went on to say as far as he was concerned if it does not return within 5 years he considered people cured.
I have read through many threads in various groups and spent many hundreds of hours reading and I have only come across a couple of instances were peoples cancer has returned after 5 years who were triple negative but there were very few details and they could have in fact been new cancers not the original one returning.
3.5 years after Liz was diagnosed she had exactly the same symptom's as you and I was convinced the cancer had returned. I even posted on here saying so. This was also in the winter months and it turned out to be nothing more than a coughing virus Liz could not get rid of.
Peter
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Hi all, I am still here and doing ok. Reading but not posting which I know is selfish. Already back at work. The MO still on about skin graft - DEIP flap to remove skin Mets. I’m not convinced. Love the pic of Kath and lab. Hope winter is going well. Weather in Australia crazy. So very hot and then not. At least the fires have abated. We are all stillreeling from the devastation. Still trying to sort out pics. Will post again soon. Xx
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Hi Adagio,
Everything is moving very quickly for you. I do hope the results of the blood tests will be available very soon. The CT scan will make the situation much clearer. A chest or cold virus is certainly capable of leaving you with a persistent cough and an opaque patch on your lung. I'm not at all surprised that you have no appetite, your stress levels must be through the roof.
My thoughts remain with you. I'm very much hoping that you'll have some good news very soon.
Love,
Gill xxx
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Hello Mary,
I'll reply to your very interesting post either today or tomorrow.
Much love,
Gill xxx
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hi gill,
Thanks, I look forward to it. And after all my complaints about lack of snow we have had several small snows lately. They were very wet and vanished quickly, our main weather story has been rain, over 12 inches in the last few weeks, plus the melting snow.
Talk soon! Mary
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Hi Helenlouise,
Not selfish at all! It must be difficult to find time, especially when working, coping with your diagnosis and living in a country still coming to terms with a huge disaster. I can understand your doubts about further surgery, particularly with all the problems you had with your wound last time.
No real wintery weather here. No hard frosts and no snow. My snowdrops are in flower and the daffodils not far off. Brexit happens tomorrow, half of the country is jubilant while the other half (including me) is despairing.
Good luck with keeping cool.
Gill xxx
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Adagio,
Good luck with CT and other tests. It sounds as if they are covering all bases by including ECG. Good that these tests are coming along quickly, and you are not having to just sit and wait too long. So sorry you are having all this stress, I am like Adagio, and thinking it could very well be a virus of some kind.
Love, Mary
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Hi Kath,
Don't know how you cope with the heat, poor lab with all that fur.
I do love snow when it first falls, but I'm in the minority here. The country grinds to a halt after the first few inches, schools close and the roads are quiet which always appeals.
Hope there's some cooler weather coming your way soon.
Gill xxx
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hi Kath
Glad you are escaping on a cruise and then London, have a great time. That is some serious heat you are having. I'll bet your dog will just lie in the AC while you are gone!
Love Mary
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Hi Helen, don't worry and feel selfish, you have been traveling and life gets busy.
I saw a documentary last night on Fukushima area, the moderator talked to people who said there was still radiation there. Rather odd they are building the Olympic city for 2020 Games very near to the site, they apparently want to prove all is well. It was a bit disturbing, not sure how that will turn out. I see that you are doing some thinking about further surgery, it sounds like a lot. I believe the DIEP flap is taken from the back? I did not have reconstruction nor radiation so I am no expert, I just hope for things to go well for you. You have been thru a lot!
Glad the dreadful fires have subsided.
Love Mary
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thanks for the reassurance ladies. Mary the DIEP flap comes from the stomach and uses the epigastric artery to improve blood supply to the skin graft. So double whammy to the front of the torso. It is a newer technique and proving popular for reconstruction. If I do the surgery I will only be reconstruction the skin to chest wall or repairing the defect as they call it. All very scary. Appointment scheduled for 19/02 to find out more. Another very hot few days. I had to drive 120kms to a meeting today and a one point the car was telling me it was 47degrees. A low tonight of 34. Thank goodness for air conditioning, good insulation and ceiling fans. Take care all xx
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Hi Mary,
So, you don't get to play in the snow quite yet. All this dull weather is so boring and I always think some really cold weather helps kill off the garden pests and bugs in general. As it is, the rabbits are out in force and chasing each other around as though Spring has arrived and the male pheasants are already showing off to the females.
Chris' first newsletter was packed with useful information. I haven't even opened the second one yet. I did some research on Luteolin and its cancer inhibiting qualities. I noted that it is found in a wide range of food - celery, thyme, peppers, chamomile tea, apples, and onions for example. However, this may not provide us with sufficient quantities. Again, a varied diet of fruit and vegetables is key. I wouldn't want to take it as a supplement. I do take high dose vitamin C, vitamin D and turmeric supplements. Green tea is next, it contains caffeine so I've been avoiding it up until now. I'll try it and see what happens.
Repurposed drugs are interesting. One of our priests has bladder cancer and is being treated with immunotherapy derived from the BCG (TB) vaccine. It is hoped that it will trigger his immune system to fight off cancer cells. I'm waiting to see the results of metaplastic breast cancer trials using a repurposed cardio drug. As the drug is repurposed, trials take only 5 years.
It's so frustrating when all breast cancers are lumped together by the media and by people who should know better. Hormones in our food only impact hormone receptor+ breast cancers as far as we know. However, what about our reproductive system? I steer clear of all meds contain hormones. I've always been strongly opposed to HRT and refused, it despite the supposed benefits. Prior to cervical screening I was offered the suppositories you mention. I refused even though the oestrogen content is small and very safe, according to my GP. I guess it depends on your quality of life, if the dryness is making you miserable, then it might well be worth it.
Today is Brexit day. Who knows what tomorrow will have in store? We now have two people with coronavirus, but our Secretary of State for Health has it all under control, what a relief!
Sylvia is quiet this week, but has very little spare time these days. Hoping all is well with both Sylvia and Raymond.
Enjoy your weekend.
Much love,
Gill xxx
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Hello everyone,
n ExeterJust to let you know that Raymond is in hospital in Exeter and that is why I am not postingi.
I shall explain later.
Love,
Sylvia.
xxx
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hi Gill
After my complaints about lack of snow, we did have several small snows. Put them all together and it would have been a good one. The big thing in January for us was rain, we had loads of very heavy rain.
I haven't looked at Chris's 2nd post either. I do have some organic decaffeinated green tea, maybe you could find some of that. I avoid caffeine in afternoon and evening. Thanks for scouting out Luteolin. Yes I don't think I will buy it as supplement either, I have enough of those already.
I was prescribed low-dose estradiol after a long-ago hysterectomy. I took it for years, always being told it was safe. Is that why I got TNBC? I don't know. This suppository thing all started when my gynecologist couldn't do a proper exam because of dryness and atrophy. And I told her it felt very dry. A couple of years passed and last summer she pronounced a new product that was safe! So I asked oncologist and she also said ok. So now I have this box of expensive suppositories that I am afraid to use; sitting uneasily on the fence, that's me!
I read an article that was very positive about Brexit in Wall St. Journal, the article said I should congratulate any Brits I know. The article says "a Brexit that goes well would be an economic boon to everyone. The voters chose peaceful and prosperous coexistence with their neighbors rather than mindless and relentless integration." So I say Congratulations, and I hope all will go well. A very pro-Brexit article, this was.
We have 1 professional football team in our state, they (Kansas City Chiefs) are playing in Super Bowl this weekend, the BIG football game. There is great excitement around here.
I will talk to you later, and I hope Sylvia is getting some rest.
Love, Mary
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This was lovely, snow preceded by ice.
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Hi Mary,
Replied to our other Mary the first time around. Blame chemo brain. Trees look so pretty with a coating of snow. This is what Winter should look like.
I had a feeling that something wasn't right when Sylvia hadn't posted before the weekend. Hope Raymond will soon be out of hospital.
Love,
Gill xxx
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Hello Sylvia,
Please don't reply to this when you have much more important things on your mind. My thoughts are with both of you. Give my best wishes to Raymond.
Much love,
Gill xxx
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HI Gill
I feel dreadful, apparently I sent my post exactly when Sylvia sent her news about Raymond. I left right after posting the snow pic and didn't see Sylvia's post till just now. I certainly hope Raymond is allright and i hope they are soon home and he can rest up.
Best wishes for Raymond and Sylvia, Love
Mary
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