Calling all triple negative breast cancer patients in the UK
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Hello Maryjv,
I am just popping in to say that I was glad to read that your treatment is progressing.
Keep looking forward with determination. You will get through all of this.
Love.
Sylvia xxxx
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Hello adagio, Mary, Kath, Helenlouise and any other members of the group that I have missed.
I suppose you are all busy getting ready for Christmas. Please pop in when you can.
Kath, I cannot believe the raging fires you are having and there seems to be no end in sight. With the weather now it seems all or nothing. Here we are getting endless rain and the damp seems to chill me to my bones.
HelenLouise, have you left for Japan?
adagio, i hope all is well. Are you having a big gathering for Christmas?
Mary, I imagine that you are very, very busy at the moment.
Best wishes and love to all of you.
Sylvia xxxx
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Hello again,
I saw this famous quote that Val had posted on the TNs and I thought it would be good to post it here. Thank you Val I am glad you are doing so well and that you have now past five years since diagnosis.
Sylvia xxxx
"An ancient quote has really helped me: So never be anxious about the next day, for the next day will have it's own anxieties. Each day has enough of its own troubles."
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hi Sylvia
You are right, I am very busy right now, hoping for a lull later next week. Today I will go to a Christmas party later, with my brother and his family. Christmas eve will be with my late husband's side of family, and christmas Day I will spend the afternoon with friends. I will only have guests for a few hours at my house, so am planning a little food for that. This time of year also means paying property taxes, and insurance bills, on top of all the shopping!
I read a little bit on the Moderators report on the annual BC Symposium; TNBC does get a section, apparently researchers tested pre-adjuvant Keytruda and Tecentriq on early-stage TNBC. These are both immunotherapy drugs. Keytruda performed better in these tests. I have noticed that quite a few TNBC patients here are being given Keytruda, so I didn't see anything new really.
Politics is usually annoying, and I don't watch much of the impeachment farce going on over here. It's like watching a bad soap opera that never ends, the Democrats keep getting shot down and they bounce up again with another charge against the president. Everyone I know is thoroughly sick of it and considers it a waste of time and taxpayer dollars.
I read this morning there will be a show on PBS STARTING on Wednesday, ( Christmas Day, i suppose.)" Lucy Worsley's12 Days of Tudor Christmas". It sounds entertainig, I want to see how Henry celebrated the Holiday!
I will close for now, and will b back on another day,
Love Mary
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hello all! Thank you very much Sylvia!! Yes, all the tests are completed...and now I prepare for 5 months of chemo, AC then Taxol. Deep cleaning right now so that way hopefully just light cleaning during chemo! My daughter Annabel (7) is such a big help, loves washing dishes, helping with clothes and does a great job cleaning her room❤️ Happy holidays and thank you al for you’re encouraging and inspirational words of support...Iam truly honored and blessed to have stumbled upon this forum and all of your wonderful ladies 🙏❤️
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hi Maryjv
How wonderful you have your little girl to help you, what a blessing. You have made me realize again what we all share here, and how we are all in different places with this TNBC diagnosis. While I am 5 years out and complaining a little about paying bills and shopping, you are facing the treatment phase of this journey and preparing for that as best you can.
Please know that I am wishing for you a smooth way through, and a great outcome overall. We have all been standing where you are now, and are here for you. Just one of the nice things about talking to the ladies here is the fact that we here in USA are sleeping when they are up, for the most part, so there is usually someone here!
Merry Christmas to you and family, talk to you again soon.
Love, Mary
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hi Gill
Your description of the English countryside sounds lovely, and Cornwall very intriguing. Not sure how I would feel about the clotted cream, and where does the jam go? I must confess much of my Cornwall interest comes from reading many novels, by Victoria Holt, Daphne du Maurier, Charlotte Bronte's Jane Eyre and Wuthering Heights on the moors of Yorkshire. All of those poor governesses, the saturnine, brooding Lords of the manors, the kindly (sometimes) housekeepers and the 4 PM teas, with hot buttered scones and biscuits. I found it all fascinating. One of the nicer cruise ships I've been on offered High Tea every afternoon, we tried to get to that each day and enjoyed It, but didn't see any clotted cream!
Jump to the present tense and I do still very much want to come there!
I am so sorry to read about the state of your Hospital (s). "The least unsafe option" does not sound like a good plan, I can't even imagine what that must be like if one is a cancer patient or any patient for that matter. I suppose the only option is to travel to a large city or go for private care?? Or is that any better?
As for our Christmas Mass, I think you are right and I had same complaints last year, as in scratchy throat and draining sinuses, ugh. This year I add to that, recalcitrant singers who wont take their hands out of pockets and some who wont get anywhere near the microphone. And a couple who are saying hang it all and are bringing schnapps to Church! It's anarchy! O well, this too shall pass.
Talk to you soon, love, Mary
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Thank you Mary, happy holidays everyone 🙏❤️
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Hello all
Best wishes for a wonderful Christmas and a happy new year.
Love
Jags
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Hi Mary,
Cornwall is intriguing, rugged, and beautiful, full of drama, smuggling and shipwrecks. It also has many deprived areas now as there is virtually no employment left down there. Agree about the clotted cream, yuk! Strawberry jam works for me.
Well, your church is either, anarchy or fun, depending on how much you like schnapps. The sulky singers made me laugh. It isn't all Christmas spirit around our church either. The volunteers are getting rebellious after years of being taken for granted. They work hard, more and more work is loaded on the few and when people make mistakes they are castigated quickly enough, but rarely thanked. Anyway, there's trouble at t'mill.
Hoping that your shoulder is continuing to behave as it should at this stage. Still keeping fingers crossed for March or very soon after.
That's about all from me until after Christmas. Enjoy the festivities, they come but once a year, for which I'm profoundly grateful! 🥂
Much love,
Gill X
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Hi Maryjv
Happy Christmas to you and all those you love.
We're all here to give you any support you need and, of course, just to listen. Keep on doing just what you are doing - getting on with it and looking forward.
Much love,
Gill X
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Hello Sylvia,
With all the rain you've been having I hope there's no danger of flooding. I remember when Christmases used to be white, now they're just wet. I long for a crisp frosty day just for a change. Looking on the bright side, yesterday was the longest night. I always start looking forward to Spring in February, so not long to go.
I don't enjoy the Christmas madness either, just seems like greed to me and very little to do with the true spirit of Christmas, peace and goodwill.
Johnson was caught at a party with an ex Russian spy earlier this week. The much promised Russian report has not been published and the much promised improvements in social care and a higher minimum wage have been sidelined. Our PM did not visit our failing hospital and Prince Philip was taken from his Norfolk home to London for treatment last week, no Norfolk and Norwich hospital for him. There is only so much that people will tolerate.
Johnson has no idea what his much lauded Brexit Bill really means. His modus operandi is to wing it, avoid it, and generally pull the wool over everyone's eyes. The right wing press is complicit and a danger to democracy, what little we have left.
I will be back on the thread shortly after Christmas. In the meantime, I wish you and Raymond a peaceful and healthy Christmas. Thank you for this wonderful thread.
With much love, as always,
Gill X
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Hello everyone on the thread, both regular posters and those who drop in occasionally. It's lovely to hear from old friends. We have so much to learn from each other.
Wishing you all a very happy Christmas and a peaceful New Year.
With love,
Gill X
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Hello Mary,
Thank you for your latest post. I do hope you will have a good Christmas and have time for some relaxation. I think that all of us will be wishing for a healthy New Year.
it is actually a nice day here so far and Raymond and I have been doing a bit of tidying up in the grounds. However, it seems that rain is, once again, on the way and there is serious flooding in many parts of the UK.
I must admit that I do not take much notice when new drugs for breast cancer, especially TNBC, are being pushed. They will all be toxic. I had two friends here, one with triple positive breast cancer that had spread, the other with melanoma skin cancer that had spread. They both had immunotherapy drugs that made them much worse, and Keytruda seems familiar to me, and they both died.
I have always said that I was positive about TNBC because there were no long term drugs to be put on after standard treatment. Because of this you can try to get your body back to normal.
I shall probably watch the Lucy Worsley programme, though I must admit I feel there are too many cookery programmes on the television although I realise this will be very different. There are too many people stuffing themselves while others are living in poverty.
I can understand your attitude to the impeachment procedures. We have our own soap opera with Boris Johnson, who is not fit to be Prime Minister.
Raymond and I will be glad to see the end of this year. It has been stressful and we hope next year will be better.
Love and best wishes.
Sylvia xxxx
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Hello Gill, adagio, Kath, HelenLouise, Maryjv, Jags56, Marias,
I just wanted to wish you all an enjoyable Christmas, but above all a healthy and happy New Year.
To others in the group who have not posted in a while, remember that we are always happy for you to pop in and say hello.
Love and best wishes.
Sylvia xxxx
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Hello Gill,
Thank you for your latest post. We do not have any flooding here yet.
I was so interested in what you said about Boris Johnson and that ex-Russian spy. Whatever is happening here, it is always the Russians that get the blame. I did not believe the story about the Salisbury poisoning and I would like to know where that man and his daughter are now.
From what I can tell it is the Australians who have been masterminding the General Election for the Conservatives and that although we have been told about Dominic Cummings and what he has been doing behind the scenes, the big boss in all of this is an Australian, Isaac Levido, who is just 34. I have been looking him up on the internet and do not like the sound of him, but all Boris Johnson's stupid sound bites are what he has been told to say. I think it disgraceful the way they demonised Jeremy Corbyn. From what I can see, Brexit has not been done, the deal is a con trick and the new sound bite is one nation Tories, the people's government.
I agree with what you said about Prince Philip.
That is about all for today.
Have a peaceful Christmas.
Love.
Sylvia xxxx
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Konichi wa! We made it and japan so far has been wonderful! I can’t believe we have made it after all these months of delay. Our plans have worked very well to date with every thing falling beautifully into place. My husband and I are having lots of fun, lots of walking, seeing amazing sights, meeting lovely kind people, eating strange and delicious foods and just really enjoying being together. It is cold and that is ok. I’m even hoping to see it snow. Our first few days in Tokyo we’re fine with some rain on the last night. But no worry really. Today we travelled to Hiroshima and will spend Christmas here then back to Kyoto for a few days then back to Tokyo for new year. It truly is an awesome adventure that I didn’t think I would get to do. I am fortunate, thankful and blessed to be here. Wishing you all a very happy, safe and healthy new year dear friends. Lots of love xxx
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Hi Helen,
Just had to call in again after seeing your post. You and your husband seem to be having a lovely, fun filled adventure. Just what you both needed.
Wishing you a very happy holiday and a peaceful new year.
Love,
Gill X
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Oh Helen, how wonderful ❤️ Happy Holidays to you all, thank you for all of your support and kinds words🙏
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WIshing everyone on this thread a peaceful, stress free and relaxed Christmas season - and a healthy New Year.
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Hello everyone,
Wishing you all the very best, especially good health for the New Year.
Hello adagio, thank you for popping in. It is always good to hear from you.
Love and best wishes.
Sylvia xxxx
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Hello everyone,
I have been so busy that I forgot to update my monthly survival numbers. On December 20th I marked 14 years and 6 months since diagnosis. If I can achieve this so can you.
Reading through some of the threads here in the TNBC section, I am once again concerned that patients are getting muddled up, probably because of too much information. The most important thing when you have been diagnosed is to know the basics and get on with your treatment.
You need to know what kind of cancer you have, what the tumour status is, hormonal or non-hormonal, what the stage is and what the grade is. The standard treatment will be a mixture of surgery, chemotherapy and radiotherapy. If you are diagnosed with triple negative breast cancer there is no treatment after this standard treatment, unlike hormonal breast cancer.
This is just the basics. You need to talk openly with your breast cancer team, mainly your breast cancer surgeon and your oncologist.
If you want any more details about these basics please join us on this thread and we shall do all we can to help you. You must remember that we are not doctors but we have been through breast cancer treatment.
Those going through treatment, try to switch off for the festive season and enjoy your days with friends and family.
Love to all.
Sylvia xxxx
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Hello Sylvia,
Many congratulations on 14 years and 6 months. Merry Christmas.
Love,
Gill X
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Amazing Sylvia!! You allgive me so much hope 🙏❤️ Happy Holidays everyone!!!
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Helen louise
What an adventure you are having, it sounds wonderful and it's making me want to buy an airline ticket! So happy for you, enjoy every moment!
Love, Mary
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Merry Christmas to all and Happy New Year!
May 2020 be a healthy year for all of us, and our near and dear.
Thank you for love,support and fun that I always find here.
Love, Mary
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To all
I wish for you and yours a very Merry Christmas and a happy and healthy New Year for you and yours!
Thank you for all the warm support that you all offer all year.
Much love, Mary
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Dear all,
I’m sorry it’s been so long since I last posted, but my mum and I have been enjoying getting back into normal-ish life.
I will take the time to read through recent posts, but, for now, it seems as though the regulars- Mary, Gill, Susie, Sylvia- are all doing well, and that Helenlouise is having a lovely holiday.
My mum is struggling a bit with continuing stomach issues and fatigue, but her oncologist has assured her that 6 months is still “early days” when it comes to chemo recovery and that she should wait a year before assuming these things are permanent.
“Energy” is a relative term, however, and she is able to walk 5 miles most days, and look after all 4 of my children from time to time!
Her fitness levels have definitely diminished and she is annoyed at having put on a stone, but, then again, weight gain is probably less worrying than weight loss where cancer symptoms are concerned, so she tries not to let it bother her too much.
But the last 6 months have certainly been more “normal” with lunches out;her presence on the school run; gentle walks together.
Mary- I do hope your shoulder is bothering you less, and, Gill, I hope your colitis is under control. I keep on telling my mum to keep a food diary to see what exacerbates her stomach issues, but she is rather resistant!
Anyway, I did want to wish you all a very happy new year, and hope 2020 has many happy moments for you all, to balance our the craziness of this world we inhabit!
I will try and pop in sporadically, and wanted to thank Sylvia again for all her work on this thread.
Flora and mum x
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Hello everybody!! I hope you had a good Christmas and have a new year full of health, peace, prosperity and much happiness. I've been very tired, today I started the third cycle of xeloda. I hope to be stronger every day. my mother returned to Sweden after so many setbacks with her health and arrived safe and sound. I got a cold and I got a lot of fever. I was in the emergency room, but they told me calmly, it's not just a cold. Take acetaminophen. The good night I went to bed early and on Christmas day I offered a lunch for my brothers and nephews. which I will repeat on the first day of the new year, I hope everything goes very well.
Abrazos
Marias
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Maryjv, welcome to the group. The support here is formidable and hopeful all the time. Above all, seeing Sylvie's survival and her continuous spirit makes her want to live and follow her example. I hope you are still in good health. With the chemotherapy FAC-T gave me complications in the belly but they sent me bacilli and that helped me a lot as well as boiling the water and always using a mask. I really like that your daughter is a great support for you. Receive my best wishes to you and your family.
Abrazos
Marias
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