Calling all triple negative breast cancer patients in the UK
Comments
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Hi Mary,
You shouldn't feel dreadful, it was obvious that you hadn't seen Sylvia's post. I know you'd have replied right away if you had. I hope Raymond will be home very soon. I think they both need a break from all the work they do.
I'll reply to your earlier post over the weekend.
I wonder if adagio has any news?
With love,
Gill xxx
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Best wishes to Sylvia and Raymond. Hoping all is ok.
Loved the pic of winter wonders.
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Hola Silvia, espero que pronto voy a renunciar en sus hogares y sonido y que esta temporada en el hospital a ser tan corto como sea posible y lo mejor para los dos.
Muchos abrazos
Marias
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Sylvia, keeping you and your family in my thoughts and prayers 🙏
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Hi Mary,
The Super Bowl kicks off here at 11.30pm. A bit late for me, but it sounds like fun. Apparently hot dogs and chicken wings are the favoured accompaniments. We're both watching Six Nations Rugby, France v England. So far France is leading 15 - 0. I don't think this is going to end well for us.
I'll be very happy if the Wall Street Journal is right about brexit. The Financial Times is doubtful, as Boris Johnson has left the withdrawal agreement shrouded in mystery. We have no idea what is actually on the table and it's likely that Boris Johnson doesn't know either. I live in hope.....
From what I can gather, estradiol shouldn't be taken for more than 5 years, this seems to be the case for most hormone therapies. After 5 years there may be a higher risk of oestrogen + breast cancer. Your took a low dose and your cancer was TN, so no connection as far as anyone knows. Apart from the BRCA1 gene, I can't find anything about the causes of TNBC and you can bet that there's plenty of research going on. I wonder about environmental factors? Contrary to what I posted earlier, while alcohol is implicated in hormone + breast cancers rather than TN, some research suggests that alcohol can damage DNA and this could lead to cancer, including breast cancer. About 15% of breast cancers in the UK are triple negative, so not common, but not rare enough to put down to sheer bad luck surely?
France now 24 - England 7. Enjoy the Super Bowl
Keep warm.
Much love,
Gill xxx
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Hi All,
Marias loved the pic of Cali.
Snippets of japan Here I am on the way to Hemeji Castle.
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The Imperial palace gardens Tokyo. Right in the middle of the city and although winter is was still very pretty.
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The dome that survived the atomic blast and a eucalypt tree that survived as well.
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Christmas eve is a Japanese valentines day! The streets in Hiroshima were lined with lights and festivities. We had lots of fun.
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Lastly, a Shinto shrine with the Kyoto tower in the background.
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Helenlouise - your photos look fabulous - thanks for sharing. Japan seems like a magical place
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Sylvia - I hope that you are managing OK and that Raymond is starting to feel a bit better. Many warm thoughts coming your way.
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I had my CT scan done on Thursday, so I should hear early this week what it shows. I have had quite a stressful week, but I am feeling much more relaxed today and I am feeling somewhat better physically which helps. I will let you know what the outcome is - I remain hopeful.
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Thanks adagio. I have been very lucky to be able to enjoy a vastly different culture and have a happy holiday.
Yes stay as relaxed as is possible. Easier said than done I know but I also know worrying can’t change the outcome. Good luck to you andlet us know when you do please. X
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Hi Helen louise
Japan looks lovely, like fairyland. And you look really nice, and the two of you together make a happy couple. I was just reading earlier how it is illegal to take pics of geisha without permission, it's a very interesting culture.
Talk to you later, love Mary
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Hi Adagio
Wishing you a good report, glad you are starting the week in a better frame of mind and the stress has lessened. Talk to you soon,
Love Mary
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Hi Marias,
The sky photo is really beautiful. I've been wondering how you were and how the treatment was going. I remember you saying that you were exhausted by all the trips to hospital and all the waiting, only to be told that your meds hadn't arrived. I hope this has improved and that you're now getting everything you need on time.
Love,
Gill xxx
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Hi Helen,
Lovely picture of you and your husband framed by a heart. I'm glad you didn't miss out on the Christmas fairy lights, even if they were really meant for valentines day. Japan looks wonderful.
Much love,
Gill xxx
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Hi adagio,
I'm glad you're feeling less stressed out this week. I have my fingers crossed that the results will give you the all clear and you're able to put this truly horrible episode behind you. I'm very impressed by the speed and efficiency of your healthcare system.
With much love and positive thoughts,
Gill xxx
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Hello Sylvia,
Please don't reply to this. I wanted you to know that I'm thinking of you and Raymond and hoping that he'll be out of hospital very soon.
With very much live,
Gill xxx
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Hi Gill
I suppose I should have said the Editorial page of the WSJ was pro-Brexit, elsewhere in paper there were other opinions.
Our team won Super Bowl! As they have done recently through the playoffs, they had to come from behind and suddenly go ahead with extra touchdowns to boot. As they got fired up, the other team suddenly seemed to run out of gas. Sorry about the soccer game, unless they had big comeback! So we win the big Trophy, first time in 50 years.
Hormones, I remember taking a supplement for many years, and every year being assured it was safe and only helping me, as in stronger bones, better mood, skin, and so on. I finally called a halt to it, and was okay for about 10 years. As for alcohol, I read a few articles elsewhere on this site, the gist of them was alcohol is perhaps partly causative in E+ BC. And one article claimed alcohol was somewhat preventive for TNBC, fancy that! It is so hard to know the truth about all these matters concerning things we ingest. I suppose the best way to go is to find foods that agree with us and of the best quality we can afford and treat ourselves if we like, within reason.
Also I'm sorry about your thinning hair, I read that in a previous post. That is distressing. My latest obsession is my thinning skin, my arms are bruising very easily and I have to be very careful not to be covered in purple spots. I have naturally thin skin anyway and was a sunbather many years ago. I have ordered leather gauntlets for use this summer when i work outside, or else I'll have to wear a muumuu to cover arms and legs.
I so hope we will hear positive news about Raymond soon.
Love, Mary
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note to self! Test facial hair remover cream before use! Gave myself a lovely skin infection and then proceeded to do home remedies. (Sterile Needle) on my check and jaw cause a rip roaring infection that I'm on oral antibiotics for! Have to keep reminding myself that I did it to my face and nothing else because it's right near my maxillary lymph node and freaking me out. Very red hot and inflamed ! Bloodyhate this fear!
Cheers
Kath
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Hi Kath,
I've been there. I don't trust hair removal cream, mind you, I did leave it on for about twice as long as advised - very determined hair. I tried bleaching it instead. This meant that in the sunshine my moustache shone like burnished gold. Back to the tweezers.
As for the maxillary lymph node, completely understand the fear, but remember that the problem is most likely the result of the home remedies rather than anything worse. Cancer leaves this horrible aftermath of fear. Hope everything settles down very soon. Keep thinking of that Caribbean cruise coming your way in just 60 something days.
Gill xxx
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Hi everyone,
I got the result of my CT scan and thankfully there is no evidence of metastasis - my left lung has "crushed glass opacity" which the radiologist said suggests acute pneumonia - which would explain why I have felt so wretched. The doctor prescribed antibiotics for me, which she said might help but she felt I was over the worst of it. Or she said, I could keep them on hand in case it flares up again. I really do not like taking antibiotics - so not quite sure what I will do - perhaps Kath Seward could help me with my decision. Anyway, thought I would keep you all updated.
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Hi adagio,
Very relieved that you don't have lung mets. I don't like taking antibiotics either, but acute pneumonia sounds very serious, thank heavens you're over the worst. I can't say whether you should take antibiotics as a precaution against a potential flare up. I hope you find someone who can advise.
Hoping you'll be fighting fit again very soon.
Gill xxx
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Wonderful news Adagio!!! Hope you feel better soon
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Hi Adagio
Wonderful news, except for the pneumonia. I am glad it's gotten better and hope you are soon fully recovered. Take care of yourself and get rested up, you're a patient now, a relieved patient!
Love, Mary
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Hello everyone,
Raymond is still in hospital. He had a heart attack. It is a nightmare with the NHS.
Love,Sylvia.
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