Calling all triple negative breast cancer patients in the UK
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Hello CocoonCat and Kath,
Thank you for your posts and Kath thank you for the link and the photographs.
It has been a busy tiring day today so I shall answer when I feel more relaxed and have more time.
Best wishes.
Sylvia xxxx
Hello Gill,
Someone sent me a Private Message saying that you might be interested in reading posts from someone called Wrenn, who is apparently metaplastic. If you put her name in Members, you should find her details and her posts.
Best wishes.
Sylvia xxxx
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Hello Sylvia,
Thank you for passing on the message. Very kind of someone on the site to take the trouble to look at Wrenn's profile and pass it on. I found Wrenn a few weeks ago. Her story should give everone hope that even the most aggressive cancers can be beaten and often are.
Love,
Gill X
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Hello Flora,
Hoping that your mother is continuing with her recovery. It's so difficult to see someone you love having such a difficult time. This wretched disease!
Dr, Harries was so kind and explained everything very clearly.
Apparently, metaplastic breast cancer is always treated with chemotherapy , notwithstanding the mastectomy and clear lymph nodes. Everyone should be assigned an Oncologist, it's basic protocol.
Dr. Harries has created a chemotherapy plan especially for my subtype and this should begin ASAP after the wound has healed. He explained side effects and it all seems very doable. Naturally, I've forgotten the names of the chemotherapy types, but he'll write to me, my GP and most importantly, my surgeon, this week, so I'll let everyone on the thread know the details then.
Apparently, the chemotherapy will increase my prognosis by 30% so very worthwhile.
Flora, without your recommendation, I would never have met Mr Harries or visited the amazing new London Cancer Centre, so thank you.
Best wishes to your mother,
Gill X
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Dear Rosie,
So pleased you got to see Dr Harries. It sounds as though it was a thoroughky worthwhile appointment with an oncologist who really knows about triple negative cancers in all their forms.
We also found him kind and clear. We would have jumped at the chance of having him as our primary oncologist except that we know it would have been highly impractical with us living an hour and a half’s drive away.
As it was, he was the one who recommended Dr L, my mother’s Oxford oncologist. She has also proved to be very good.
It’s nice to have been able to help-just what these forums should be for.
My mother is much recovered from her latest ordeal. She has been given a 10 day break from chemo and we’ll then meet Dr L on Friday to discuss her going onto pacliotaxel.
Right now, she feels that she never wants any drug put into her again, so we’ll have to have a very considered discussion re: the benefits of the taxane. More specifically : by what further percentage will her chances of the cancer returning be reduced if she goes ahead with this chemo. We are fully aware of the many side effects people can experience.
Her GP has actually been pretty reassuring about her new heart issues and said that they might even “have a conversation” about her coming off the beta blockers further down the line.
I have read quite a lot re: beta blockers possibly playing a part in reducing the chances of recurrence so will have to quiz Dr L about that.
Hope all of you are well-or as well as one can be on the various stages of your cancer journeys.
I have spent the day experimenting with cooking purple sweet potato, another supposed “superfood” and the most beautiful colour!
Flora
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Sorry - that should have said “Dear Gill”
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Gill and Flora,
After reading your posts I want to come to UK and meet Dr. Harries, he sounds wonderful. I am on my second MO and there is something missing there.
Gill, I'm glad he gave you a definite opinion, will you follow through with his recommendation?
Flora, best wishes for your discussions with your mom about continuing treatment. Big decision!
I have also heard about off-label use of beta-blockers and other old drugs too that seem to help with cancer treatment and prevention.
Talk later, love, Mary
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Hello Sylvia, Maryna and all other people on this thread --
Just thought I would drop in and say "hello" and to let you know that all is well here. I had an incredibly busy summer with a constant flow of house guests which I found very tiring - I was very glad to have the house back to myself again.
I have not had any more check ups since April - I am due for a mammogram - but I am re-considering if I want to have another one or not - it has been 18 months since my last one. I did not go for my usual blood tests with my GP this summer either because I was so busy - but maybe I should make the mammo and blood tests my fall project. I find it takes a lot of my emotional energy to get all these things set up. I do continue with acupuncture regularly, eat a healthy diet and walk for 8,000 - 10,000 steps fairly consistently on a daily basis - I call this my medicine!
Just like you, Sylvia, I will not be getting a flu shot - never have had one.
My husband and I had a fabulous 2 weeks in Turkey and I found the culture fascinating. The geology is other worldly in Cappadocia - and Ephesus is simply mind boggling - the very streets in that ancient city were made of marble - incredible. They are still unearthing residences from the 4th century and the architectural detail is quite intact and the mosaic tiles and paintings are so well preserved from being underground for so long. We had 5 full days in Istanbul and I loved it there - although it is very busy and a bit noisy. I found the Turkish people to be friendly and happy. I felt very safe in the parts we were in and everything is so cheap there.
I am going to try and post a couple of photos of Turkey just to give you an idea of what it is like.
So glad that this group continues to serve so many women - I know it was a valuable resource for me.
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Hot air balloons at Cappadocia
Ancient Ephesus - this is the library.
Hagia Sophia, Istanbul in the background and me in the foreground
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Hi Sylvia
I think the link on radiation is from Ty Bollinger, so all the skin-aids are organic, natural things. Good of Raymond to help you out with all this.
The Judge Kavanaugh fiasco is over for now, on to the next, he has his seat on the Supreme Court. What I thought about it is this in a nutshell: I thought it was a last-ditch effort by the opposing party to block him from the court. While most people think the woman (Dr. Ford) probably was attacked in a despicable way 36 years ago, she failed to make the case that Kavanaugh was involved, and it was the same with her witnesses. They either didn't see him there, or he might have been in the hallway, or he was a friend of one of the guilty ones, according to witnesses. Then the whole mess became tied to the problem of women in general being attacked and not believed, with Kavanaugh still in the middle of it while proclaiming his innocence. Once the case was given up as a lost cause, further shocking news came out about him; once when in his 20s he threw ice at someone in a bar! Good grief. The news has now been taken over by Hurricane Michael, it looks to be a very serious storm and will hit Florida sometime today.
As to Brexit, I still think the politicians just drag things on because most people get fatigued by it and then the politicians can end up doing as they please. It takes a strong leader to keep things in the forefront.
I had not heard of Charles Aznavour, I'm sorry he is gone, I will have to look him up. I heard a little about the new version of "A Star is Born", which has come out in theatres recently. I did hear that the female lead (Lady Gaga), sings a version of "La Vie en Rose", Edith Piaf's song in this film. I have not seen the movie yet.
I hope you find the episode on the Alzheimer's research interesting; yes, the telomeres are important apparently. We take so much for granted when we are young, we had no worries about telemeres then! I'm also glad Raymond is looking at the information, we can hear his opinion perhaps.
I am now getting ready for houseguests, I have even bought a new bed! I am quite used to living alone, since my husband has been gone for 3 1/2 years already, it will be different to have my brother and his wife here for a week.
I will talk to you soon, love, Mary
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Hello Kath,
Thank you for your post dated October 8th, and thank you for the new link. I have made a note of it to look up later. Thank you for the photographs.
I was glad to know that your mood improves as the weather improves.
I think we all have to learn to live with aches and pains. They seem to be part of life. Flu is very much in the news over here at the moment. Yesterday I had to pop in to my GP surgery, so I picked up there Autumn/Winter Newsletter. All of the first page was about the flu vaccine and it says much the same as what you told me. I was surprised that they are vaccinating children as young as two. I was even more surprised to read that if a child is aged between 6 months and 2 years old and is in a high risk group for flu, they will be offered and injected flu vaccine.
It is exactly one year ago today that I had a flu injection in the left arm that brought on swelling in my right lymphoedema arm and led to an anxious year.
I do hope you enjoy your Spring.
Love.
Sylvia xxxx
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Hello Gill,
I read your post to Flora and would be very interested to know the names of the chemotherapy drugs that Dr Harries is proposing.
Wishing you all the best.
Sylvia xxxx
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Hello adagio,
Thank you for your post. It was good to have you back on the thread.
I was interested to know that you had never had a flu shot. I had that one last year against my better judgement. It was the first one I had had since 2005 when I had to have one as I began treatment. I shall not be having one ever again! I went from 2005 to 2017 without any flu.
I shall not be having any more mammograms either. I just want my body to be left alone to keep as healthy as possible with a healthy diet, gentle walks, keeping my brain active and as much as I can keeping away from all things medical!
Thank you for the lovely photographs from your holiday in Turkey.
I am wondering whether Hanieh has now gone to Turkey. She has disappeared from the thread, as has Marias.
Keep well.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your latest post. I have just looked through the printouts that Raymond made for me. There are three from Chris Woollams of Cancer Active. They are:
20 tips for people having radiotherapy
Here are ten ways to improve the results of your chemotherapy whilst reducung the risks and severity of potential side-effects
Cancer Active Immunotherapy Review – the new frontier
Immunotherapy is apparently considered the fourth pillar of cancer treatment and carries on from surgery, chemotherapy and radiotherapy.
It is strange that no one on the thread, as far as I know, is being offered immunotherapy for breast cancer treatment.
The other papers which I think must be the ones from Ty Bollinger are entitled "4 Natural Ways to Prevent Radiation Burn (Radiodermatitis) by Marnie Clark". It explains the goal of radiotherapy and the good products to use which I think I listed in a past post.
I would think that all new patients and those going through treatment would want to read these papers.
The final lot of papers I have are entitled "Geroscience" and that is about Dr Michael Fossel on telomerase therapy in cancer, Alzheimer's and more". I am in the process of reading these pages.
I think that is about all for now. I think you are right about Judge Kavanaugh. It was more about annoying Donald Trump and keeping a Republican out of the Supreme Court. I am fed up with politics. It is a dirty game. However, I do believe that a government is there to take care of it people and I certainly agree with Jeremy Corbyn, when he says "For the many and not the few".
I shall talk more later. Try to listen to some songs by Charles Aznavour. I am sure you will like them. I loved Edith Piaf singing La vie en rose.
More later.
Love.
Sylvia xxxx
I noticed you have just bought a new bed. Bingo! We had a new bed delivered yesterday!!
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Hello Helen,
I was reading your last post and you did seem to be having a painful time. I do hope you are feeling a lot better.
Love, Sylvia xxx.
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Hi Mary,
They say it's going to be the worst storm in 100 years! Bateen down the hatches.
Susie
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Susie
I think it was a record-setting storm for that part of Florida, the only good thing about it was it moved fast and kept going, although staying pretty strong even on land. Glad we don't have those where I live, too far from the ocean. News will be trickling out today about all the devastation, so many people's lives impacted.
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Hi, Adagio
I am so glad all is well with you, I had the feeling that you were busy traveling, enjoying family and living your life. It does sound like life is good for you, hurrah! And I can see why you are ready for some peace and quiet for a bit now.
I do still keep up with my acupuncture appointments too, I find them very therapeutic. I still have a mammogram every year. I have a general blood test once a year, but not as a part of the oncologist visit. She says labs are of no use in breast cancer check-ups. So I request the blood tests from my General Practitioner once a year, just to keep an eye on things like cholesterol, hormone level, kidney and liver function etc. Call me paranoid, it's probably true. I wish I could speed-walk the miles every day I used to, but now between the neuropathy and the bad knee I can't do it, but I do as much as I can.
Your trip to Turkey sounds so enjoyable, the history of the area remarkable. Our cruise ship wouldn't stop there 2 years ago because of some trouble they were having, but what makes the news isn't the whole truth about an area and its' people, I'm so glad you had a great time. I remember reading that explorers are 99% sure that Mount Ararat in Turkey is the site where Noah's ark landed. Ephesus sounds fascinating too, so much history.
Great pictures, what a strange landscape the balloons are floating over! The unearthed library is beautiful, and you look so happy and healthy.
Great to hear from you!
Later, love, Mary
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Hello Sylvia,
I'll let you know which chemotherapies I'll be having when the letter arrives from the Oncologist. I really should have written it down. Once my local hospital realised that a senior Oncologist at Guy's hospital had been consulted, it was agreed that I would have an Oncologist and chemotherapy locally. I don't have an appointment yet, but will begin operation pester later this afternoon.
Love,
Gill X
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Hello Sylvia
I am doing ok. Currently in the week off Xeloda and this round side effects seem to be ok so far. Fingers crossed my bloods are good next week. I do feel quite fatigued at times but my burns (whilst fairly unsightly) do seem to be improving! And my village (of family and friends) is just the best! I am very fortunate.
Best wishes one and all xx
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Hello Mary,
Very glad you're safe and unharmed by this devastating storm.
Yes, I'll certainly be acting on Dr. Harries' recommendation. He knew all about spindle cell metaplastic cancer and has a treatment plan that looks very doable. I'll run it past Sylvia when I get his email or letter. Sylvia can probably give me some ideas regarding side effects. I've reached the point when I take nothing for granted and always do my research.
Love,
Gill X
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Gill: Good luck with Operation Pester. Sometimes the most useful thing about a remote second opinion is that it spurs the local hospital into further action.
This happened with us as well in the sense that Mr Harries' appointment led to my mother's care being transferred to a more experienced oncologist in Oxford (who agreed with all he had to say) and even led to an apologetic phone call from the original breast surgeon who had said "Over 70-no chemo" to my mum. She felt very bad we had had to spend money on second opinions.
Adagio: we haven't "met" before but can I say how lovely your photos were-particularly the balloons over Cappadocia. We had a very interesting trip to Turkey about 15 years' ago: we were also very impressed by Ephesus (though boy was it hot!) and liked Istanbul (particularly our boat trip up the Bosphorus and the Roman cisterns). We never made it as far as Cappadocia.
Helenlouise: glad Xeloda is proving tolerable. Great that the oncologists now have this extra chemo in their armoury.
Mary/Sylvia and everyone else: hope you're well and not overwhelmed by the state of the world/politics in general.
I am not an articulate protester or ardent political type but am a great believer in"starting local" when it comes to issues. I can't help too much with schools in Indonesia at the moment, but I can help at my children's local school; I can't solve the NHS crisis singlehandedly! but I can offer our spare room to people who have to travel miles and miles to Oxford for operations/chemotherapy; I can't change the way junk food is marketed but I can make the odd (hopefully!) nutritious, home-cooked meal for people at our local Maggie's centre.
This all sounds rather smug and sanctimonious- sorry! Honestly, I am no saint. I just know that my skills lie in helping out locally , whereas others' skills lie in campaigning, demonstrating, working in research, medicine, social care, overseas aid etc. It takes a mixture of personality types to enforce change, so just as well we all have different skill sets!
Anyway, enough philosophising for the day!
My mother has her next appointment with Dr L tomorrow and, despite the feeling that she never wants anything put in her body again, knows (rationally) that she should at least give taxane a try if that is what Dr L recommends.
love to all
Flora x
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Hello Susie,
You must be about halfway through your radiotherapy by now. Hope it's still going smoothly.
The healthy food course looks interesting and if I had more spare time I'd enroll. As it is, as soon as I was diagnosed, I gave up sugar and wine. Very difficult at first, but now I can't touch anything sweet. I seem to have more energy too and this morning out-walked my husband.
Didn't have time to visit the exhibition in London. Will try again as a pre chemotherapy treat. Being in London again made me realise just how much I missed the bustle, history and culture. Must go there more often.
Take care,
Gill X
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Hello Gill,
9 down, 11 to go. Some sessions are easier than others and it seems to be very much down to which two radiotherapists I am allocated each day with some being quick and efficient and others less so.
I haven't given up sugar yet, though intend to do so soon. I have done it for lengthy periods in the past and not actually found it difficult. Some people reckon to get side effects when they try but I'm not convinced.
Susie x
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Hello Flora,
I think it's terrific that you are offering your spare room for people who have a long way to travel for treatment and cooking for Maggie's. I do realsie how lucky I am in London with so many hospitals within easy reach.
Susie
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Hello Flora,
Having spoken to my breast care nurse this morning, I was left with the very strong impression that the multidisciplinary team have been somewhat shaken. When the surgeon said that if I wanted a second opinion I could always go privately, he probably assumed locally. I guess that Guy's still commands a lot of respect.
You do so much for your community, doesn't sound at all smug. This country would grind to a halt without its army of volunteers. I was a ward volunteer at my local hospice and after 21 years, was devastated to give it up when I had my diagnosis in August. Just felt that end of life care was not really the best place for me until I could deal with the cancer. May go back at some point though. Also volunteered as an Appropriate Adult with the police and with prostitutes, homeless people and substance misuse I'm now an archivist for the Catholic Diocese. I'm not a goody two shoes either, just insatiably nosey. People are so fascinating, I can't resist wading in. None of us would volunteer if we weren't getting anything back it has to be a two way thing. I've also made a lot of friends via volunteering.
I can understand you mother's reluctance after all the trauma. This time around, she'll be much more closely monitored and could always call a halt if, after a couple of sessions, she doesn't feel that chemotherapy is the right path for her. Seems unlikely that your Oncologist would want to take the risk of futher serious reactions.
Best of luck.
Love,
Gill X
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Gill,
"Operation Pester", I love that, good luck with it. That is very necessary these days, unfortunately. It did seem that you got in to see Dr. Harries quite quickly. How wonderful that he was so knowledgable about your specific BC.
The hurricane along our southern coast was so destructive, it moved fast but destroyed so much. Right now only 3 confirmed dead, but I think there will be more.
Later, Mary
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Hi, Flora
I would not say that Sylvia and I are overwhelmed by the world/politics in general. I would say that we are curious people and interested in a lot of areas.
How wonderful that you are so giving to others. I'm sure that all of us here give what we can and are able to do, physically, mentally and/or financially.
Again, I am so impressed with you and Gill's description of Dr. Harries, sounds like he was just the person to get things going in the right direction for your mom. I hope she can be at peace with whatever decision she makes, I do think they will be taking extra good care of her from now on!
Talk later, Mary
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Hello everyone,
The Oncologist from Guy's has recommended an anthracycline taxane based schedule, but there's an argument to spare these due to my hypertension, albeit well controlled. He would favour using them himself.
Typical examples would be FEC-C or EC-Paclitaxel weekly, with 4mg Zoledronic acid every 6 months for 3 years.
Radiotherapy has not been recommended in my case.
Any thoughts from those who've experienced any of the above?
Love,
Gill X
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Hi Mary,
Fortunately, I'm not afraid to pester when it's needed. Have to ask what if I hadn't gone for the second opinion and just believed everything the surgeon told me? Many women would have. I always thought our battle was with cancer, not the system.
When I saw the devastating impact of the hurricane I was convinced there would have been more deaths. As you say, there still might be. Complaining about the weather is a national sport here in the UK, but we're so fortunate really.
Have a good weekend.
Gil X
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Hi Gill,
I had three cycles of FEC, though not FEC-C and tolerated those very well. Many more problems with the three cycles of Taxane.
I'm having the first of my six-monthly cycles of Zoledronic acid in three weeks.
Susie
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