Calling all triple negative breast cancer patients in the UK
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Hello everyone, especially Mary, Gill, Paula and deltag (adagio),
As I do from time to time, I have a look at how the views are doing and the posts. I have noticed that the views have increased by 417 since June 10th which is not bad. However, I cannot understand why, with these views, very few people viewing do any posting. An active thread needs posts. The real views are now 151,186. Surely the technology should have brought the numbers up to this now. I have never undestood why they cut off the numbers when they changed the format.
Thank you to the dedicated few who keep the thread going. We do need people with triple negative breast cancer to let us know how they are getting on.
Are the numbers increasing? How is the treatment changing? Are more people surviving? How are they coping with all the new drugs?
As for me, I am now 19 years out and feel well but I take nothing for granted.
Wishing everyone well.
Love and best wishes.
Sylvia xx
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Oh my - it is so challenging to reach the right thread on this new website - but so glad that you got my message, Sylvia. I look forward to hearing from you😊
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Hi Sylvia,
Just found your recent post - it is late here now, but I will try to respond tomorrow. Good to hear from you.
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Hello deltag (adagio),
I was so glad tou managed to find our thread. it is such a pity that loyal posters over the years are being put to so much trouble. I am managing alright to find our thread and I also look at Calling all TNs, but the life has gone out of that one as well.
I have bookmarked both of these threads and if I click on my avatar they are listed there. By avatar I mean my photograph which I put on there when I first started the thread in 2010.
Keep trying. Do not give up.
I hope to hear from you soon. I am now wondering what has happened to Gill. It is not like her nit to reply. I do hope she and her husband, Michael, are not having health problems.
Wishing you all the very best.
Love.
Sylvia xxxx
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Hello Gill,
Thank you for your email to me. I was sorry to read that you had trouble on the thread again. I know from deltag (adagio) that she had trouble finding us on the thread, but did manage to send me a PM. I do not seem to have trouble getting on the thread. I have Calling all triple negative in the UK at the top of my computer. I click on it and it takes me to our thread. I then just type in the thread. I do not write lengthy comments and I have not lost anything so far. It may be better to type short comments in several parts and post each part separately.
If this does not work you can just click on your avatar and proceed this way.
I do agree that it was not good that Mary had chemotherapy when it was not necessary.
I shall email you later on today and bring you up to date.
Thinking of you and Michael. Give him our best wishes.
Love.
Sylvia xxxx
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Hi Everyone
Hope you are all well and sending love to you all! So good to see Hannah back on the thread. I’m on the way to Dubbo to do a BCG clinic for kids under 5 who are travelling to high TB incidence countries. It’s a specialised technique and we do nt have many people trained to do it. We have a huge amount of migrants particularly HCW moving to rural and remote areas so our tb clinics are getting very busy.
It’s winter here and we are also seeing a high rate of influenza A everywhere so supporting immunisation programs is par of my lifestyle. Just did a presentation on Rheumatic Heart Disease at the National Communicable Disease Conference that went really well. Finding I am missing study tho now I have finished my masters so I’m think of try to learn another language.
Love to everyone
Cheers
Kath
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Hello Kath,
It was wonderful to see you back on the thread. I am very busy right now but will reply when it is less hectic.
Love
Sylvia xxxx
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Hello Kath,
It was a very nice surprise to see you back on the thread when I had a look today. I do hope Mary, Gill, Paula, deltag (adagio) and perhaps Hanieh will pop in to say hello. The forum and our thread have still not recovered from the technical changes that were made to bc.org, but we live in hopes! Lots of our regular posters seemed to have given up on the complications in posting and the different feel of the forum.
It is always interesting to read about what you are doing in your work.
It was interesting to read about what you are doing with BCG injections for tuberculosis. I remember way back when I was at school that we were being given BCG injections for TB. I did not need one and was told that I had developed my own immunity. What does HCW mean?
As for influenza injections that has already begun here. I have not decided yet whether I shall have one. There was talk of mixing a Covid injection with the flu one. I do have reservations about that. The summer Covid injection here has only just ended and lots of people seemed to have been unwell from it. Raymond and I did not have it. It seems there is still plenty of Covid here.
What is the news about triple negative breast cancer in Australia?
That is about all for now. We have not had any news from HelenLouise. I do remember she was having lots of problems.
I am very intereted in Rheumatic Fever and Heart Disease. My eldest brother died of it at age 10 back in 1945. He had scarlet fever, then rheumatic fever and died of inflammation of the lining of the heart. All this happened before antibiotics, penicillin came on the scene.
Both of our motthers had rheumatic fever and they both developed heart disease.
Sending you love and best wishes.
Sylvia xxxx
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Hello Mary, Gill, Paula, deltag (adagio) and Hanieh,
I do hope you will all acknowledge Kath's post. She always has something of interet to say.
We are still getting views but not enough posts.
Thinking of you all and hope you are all well and getting on with your life.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia and TNBC friends.
I've never posted on this thread . And it's been quite a while in general since I’ve been on this website. I appreciate the camaraderie here.
Checking in say hello to TNBC friends.
I am in Florida.
Diagnosed in 2017, Stage 2B, double mastectomy without recon (flat), PALB2 mutation, one dose dense round of chemo (Adria & Cytox) (I dropped out of chemo very early).
Wishing you all a peaceful day.
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Hello romashka
I have just noticed your post and wanted to say hello.
I was interested to read about your particular case. I noticed that you were diagnosed seven years ago, so congratulations on that. I was interested to read that you gave up chemotherapy after one session. That proves that a person can do well and survive without the months of chemotherapy which can take a great toll on patients. Am I to assume that you did not have radiotherapy either? I do think that the most important part of breast cancer treatment is the surgery. This could be especially the case with TNBC.
You said that you had not posted on this thread before and that you have not posted on bc.org for a while. You probably missed all the technological changes that took place a year ot two ago and upset many members. This thread and Calling all TNs had been very active for a long time, but suffered from the technological changes. Members found it too difficult to post and thought that it had lost the great community feeling that had made it so successful. I do not know whether we shall ever get back to normal.
Can you tell us about PALB2 mutation? Over the years we have talked about BRCA1 and BRCA2 but i do not remember anything abour PALB2.
I am now 19 years since diagnpsis and I started this thread in 2010. I was inspired by Titan who started Calling all TNs earlier in that year. I used to read that thread regularly and also post there and people from there posted on my thread. It was all very enriching.
Tell us a bit about your life in Florida.
Very best wishes to you.
Sylvia xx
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I went with my heart in discontinuing chemo and so far all ok. It seemed recurrence risk was the same either way for me - whether looking at the numbers or reading about it.
I do find this new format odd and cumbersome. The old one had lots of character.
PALB2 is Partner and Localizer of BRCA2. A close family member of BRCA. I have read that there are links to PALB2 and TNBC.
I see my oncologist once a year and there are no scans.
Life here in Florida is nice. I am a caregiver at home for my husband. Amongst other issues, he had colon cancer in 2021, so my experience was quite helpful in the process.
I did not have radiation. Since I had a double mastectomy, they said there was no need for radiation.
My surgeon and oncologist were lovely. One relocated and the other retired, so I now see someone else at a different clinic.
Thank you for the nice conversation.
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Hello romashka,
Thank you for your latest post.
I do agree with you that the new format on bc.org is not as homely and relaxing as the old one was. This new one has no character and so many interesting and lively people have diasappeared. I do remember how Calling all TNs and this one used to intermingle in a very friendly way. I often wonder what happened to Titan. She was my inspiration. Technology is going too far and is too formal and without character. I do not know whether we can ever revive this thread as it was.
I do not have much time to write today but I shall write more tomorrow, Sunday, when I hope to have more time!
Thinking of you and sending best wishes.
Love
Sylvia xxxx
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Thank you Sylvia. Look forward to next exchange.
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Hello romashka,
I was glad to read that you had a positive breast cancer journey and that you continue to do well. My own journey was positive as well in that I had a very good team and had a good relationship with them. Triple negative information was quite scanty in the UK back in 2005 and TNBC was not mentioned to me. I was just told that my breast cancer was not hormonal and that tamoxifen was of no use to me.
I stayed with visits o the oncologist for ten years and five with the breast cancer surgeon. These were both women. For the first few years I had a breast cancer nurse as well and she was very helpful.
I did make up my own mind about what I would do and would not do. I asked my team many questions. I also did some alternative treatment and I did it through my team.
If you would like to start reading this thread from the beginning I am sure you would find it very interesting!
Unfortunately I do not think this thread will continue as it is just not the same. There is not enough interaction. Perhaps someone else will continue the thread as happened when Titan left her thread ages ago.
I am also very busy and preoccupied with looking after my husband who has health problems, and various family members who need my support.
Nothing has been the same since the technological changes.
I do hope you will continue to make progress and that your husband continues to stay well after his illness.
Love and best wishes
Sylvia xxxx
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Hi Sylvia and all here
It's been a while, I've been busy too, I'm doing pretty well after the surgery to remove part of my lung, it's been 3 months. So I'm trying to do things that have needed doing for a while.
Greetings to Romashka, I hope you will continue here. I was also caretaker for my husband, actually when I was going through TNBC treatment. He did pass away in early 2015 when I was starting to feel better.
This year I've been treating an unrelated lung cancer. Docs removed one lobe of my lung, it contained the ttumor. I received a good prognosis, so we'll see, I suppose.
Sylvia, I think of you often, and Raymond too. I hope you are both well, I hear on the news of much upheaval in UK, but then it seems to be everywhere now.
I will talk to you later
Love, Mary
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Hello everyone,
My husband has been recently diagnosed with prostate cancer. We don’t know what stage it is yet because the Doctors have ordered a pet scan but the imaging departments are having a hard time getting him in. Prostate cancer from what we are reading for the most part is slow growing, but from his biopsies that have come back the grade of the tissues samples are quite high meaning it’s aggressive. I think that the treatment will depend upon what stage they determine he is. He has always been the most positive person and always believed that I was going to be ok and come out of my TNBC diagnosis. He is my anchor even on a good day. I’m struggling to find the words to say to him simply because I’m the one in the relationship to see the more negative side of things. He is very worried about the PETscan and it showing that the cancer is spread and that there would be limited treatment options for him. He’s a strong person both physically, mentally and spiritually but this has shook him to the core as we all know how this diagnosis can.
This is a photo of us a couple months ago on a trip with our daughter and son in law with two of our grandchildren.
I’m trying very hard to get past being so critical of photos of myself, it is what it is as far as age and going through treatment.
my husband Dennis is the best person I know, and I just keep telling him that we all need him here.
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Hello Paula,
I was sorry to read that your husband has been diagnosed with prostate cancer.Try to remain positive.
Wait to see what the treatement is. There are are always options.
Look after yourself and thank you for the photograph.
All my time and energy is devoted to looking after my husband who is suffering from heart failure.
I see that Mary posted and she is trying to get her life back to normal after her cancer treatment.
Life is pretty difficult.
Thinking of you. Love and best wishes.
Sylvia xxxx
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Hello Mary,
I ssaw that you posted on August 10th and am just replying.
The thread has not been the same since the new format was introduced. I think we have lost our friend Gill. She had lost all hope in the forum recovering and becoming active for us. The last time I heard from her was when she told me she and her husband were going on a cruise. That seems some time ago.
I have been busy looking after my husband, Raymond. It is a very difficult time for us.
I was glad to read that you are getting back to normal. I am sure you are going to do well.
I received a newsletter from Chris Woollams today and it sounds very interesting. Please have a look at it and let us discus it.
I have so many things to do at the moment and am working through a list.
Take care.
Love and best wishes.
Sylvia xxxx
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Hi Sylvia, Paula, and Gill too
It seems that since I missed much of the summer due to treatment and surgery, now there are so many things I try to catch up with, and am only partly successful. Then I tire myself too much and that's where I am today.
Sylvia, I think I told you that my husband also had congestive heart disease, there were no effective treatments for it at the time. He would get breathing treatments , because he also had lung disease. I hope Raymond doesn't have Lung disease! I did hear there is a medication that docs give now, I'm not sure of the name, I wonder if it's effective. I hope so.
Paula, I read that your husband has Prostate cancer. I know a lot of men that treated it and carried on with success, I hope he is one of these!
Sylvia, I lost my friend Jackie in August, and now my friend Sharon is at home living her last days, she has ovarian cancer that traveled to her stomach, and tumors fill her abdomen. I visit her every few days, she is weaker each time. Jackie died suddenly, I don't know why, her family chose not to do an autopsy. It's a busy summer for me, and a sad one. I'm glad to feel the cool breeze of fall coming though, it is blowing this morning, it feels so good after the heat of yesterday.
Greetings to Raymond, and to your husband, Paula. Good luck to both of them!
And to us! Lovee, Mary
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Hello Mary,
I popped in quite by chance and hoped to find you. I think we have all given up on the thread. I wanted to wish you a happy birthday for September 2nd. Mine was on September 1st.
Raymond continues to live as normal as possible. He just needs lots of rest. The main medication is a beta blocker to strengthen the heart and digoxin to slow the heart down. Heart failure is no joke.
I continue to carry on as normally as I can but we are at home most of the time now.
Gill seems to have disappeared. The last I heard from her was when she told me that she and Michael were going on a cruise. I do not think she will post on the thread.
I do miss all the activity we had. It was so much like a wonderful club and we filled it with interesting photographs and made it like a happy family get-together, even though we were all on serious breast cancer journeys. I do miss it all. it gave such a purpose to my life.
Like you, We are losing friends through illness and we miss them so much. It makes life very lonely.
Thinking of you and sending love and best wishes.
Sylvia xxxx
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Hello Mary,
I hope all is still well with you. I noticed there has been no response to my post to you.
I had a nice email from Gill so we have brought each other up to date. I told her that you post on the thread so I hope you will hear from her here.
It is good to try to escape from the madness of the world for a while. I can hardly believe what is going on.
Love and best wishes.
Sylvia xxxx
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Hello Teka,
Thank you for your PM. I do understand what you mean. I think we all feel the same after these changes. It is such a pity.
Take care.
Love.
Sylvia xxxx
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Hi All
Just touching base to say hi. Hope I are all well and I think of u often. Summer is coming in Australia and although it’s hot I tolerate it better than the cold! My mind goes to very dark places when it’s cold. I wonder whether it will ever stop doing that!
I now have 5 grandchildren with my youngest daughter having a son. Who is now nearly 2. They are such a joy! Hope u are all doing well?
Much love Kath
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Sylvia, Im so sorry its been so long, I have been just busy with so many things going on. For one, I had to get a new computer and printer, that sounds minor but its been a challenge for me to move into this century and get rid of my old stuff. For another, My sister sent a cryptic message last weekend, she has been diagnosed with a lesion on her lung and a mass on her stomach, and she doesnt want to talk about it and she doesn't want to hear the C word. She doesn't live near me, and I"m left with not much information about such a serious situation. She is doing chemo and is having a miserable time. She has a close family so that's good.
Other than that, I've been told I need a new roof 2 years ago still waiting for the roofer. Also waiting for some guys who will renew my patio, it is quite gloomy right now. Also am waiting for people who will remove 2 very large dead oak trees in danger of falling on the road in front of my property. In the early evening I find myself very tired, am sure I got another level of neuropathy from the chemo I had in March.
I hope you and Raymond are well, you are well off to not have to bother with home maintenance,
I'll be back later, I have to make some phone calls while it's still morning.
Love, Mary
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Hello Mary,
I just wanted to say that I have read your post and am sorry to learn that you are having a difficult time.
I understand about the stress with computers. I think they have made life in general stressful and that they are more trouble than they are worth. Technology is destroying community. I do hope you have managed to sort out a new computer, but if I were you I would stay off it as much as possible.
I do hope that your sister is alright and that she is doing well with whatever she has had to face.
I do not think there is much point in posting on our thread. It is well and truly finished.
Gill has finished with it and thinks, like me, that the technological changes finished it. I have been very upset that it came to an end because I put so much of my personal life in it and was very proud of all the posters and all the information we put into it.
The reward was to have it wrecked and the right number of views just cut and misrepresented the huge number of people who put so much into it.
I see that Kath has also posted and I wish her the very best. You, Gill and Kath have tried to the very end but it is pointless now.
Wishing you all the very best.
Love.
Sylvia xxxx
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Hello Kath,
I just wanted to say thank you for your post and photograph. I am sorry to say that our thread is finished. I do wish you all the very best for the future and thank you for the useful information that you posted on the thread over the years.
I still worry about all these vaccinations. The elderly here never seem to be free of them. The latest was a flu injection and a Covid injection on the same day. The age group 75 to 80 are also getting an RSV injection. Who knows what will be next? We also have MPOX that has arrived in the UK.
Our country is a total mess!
Take care.
Love and best wishes.
Sylvia xxxx
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Hello Mary,
I am posting on the thread as a last gesture to the other viewers that the thread has truly come to an end.
I want to thank you for your dedication and for the compliments that you have made, I think we should all be proud of the thread that we all made together.
I do hope all will start to go better for you.
Everyone seems in a state of excitement today over the American election. I think your electoral system and ours need to be improved and modernised. The Electoral College does not seem fair and our way of counting votes is absolute rubbish. This is my own opinion. Our country is too antiquated!
I am sure that Kath and Gill will be thinking of you.
Many thanks for ten years od dedication and love and best wishes to you.
Sylvia xxxx
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