Calling all triple negative breast cancer patients in the UK
Comments
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Hello Mary,
Thank you for your latest post. I was glad to know that you have figured out how to stop losing your posts.
As for Alzheimer's disease and other forms of dementia, I would think that, just like cancer and other chronic diseases, there are multiple risks and causes. I think that diet plays a major role in our health. We are what we eat.
Walking around in Exmouth I am horrified at the number of people I see who are obese. Nevertheless they are stuffing themselves with huge ice creams, junk food and nothing healthy. Eating a simple healthy diet of mainly fruit and vegetables is very easy. You do not have to be a vegan but you do need to eat whole foods and stay away from all the processed foods that are everywhere and are really non-foods. I eat some oily fish, mainly salmon and only wild. Farm salmon is not much good and is lacking in omega 3 oils. I eat lots of raw nuts and seeds, beans, peas and pulses, North Sea prawns and organic plain soy yoghurt, along with unsweetened soy drink. I think we each have to do what we can, so that life is bearable for us. Like you, I love vegetables.
As for the human papillomavirus (HPV) I think it has been around for a very long time.
It is a type of virus that is responsible for warts and genital warts. There are more that 100 strains of HPV and infection with some of these strains is thought to be a causative factor in some cases of cervical cancer, mouth cancer and anal cancer. A vaccine has been developed that protects against the two strains of HPV associated with cervical cancer and genital warts, and the vaccine is offered as part of the routine immunisation programme to girls age 12 to 13. I think there is some controversy about this vaccination.
As for Lyme disease, this a disease caused by the bacterium Borrelia Burgdorferi which is transmitted by the bite of a tick. Areas in which deer live are especially likely to harbour ticks. Symptoms vary and if complications arise because the bites have not been dealt with promptly, you can suffer from meningitis, facial palsy and an abnormal heart beat. The most serious long term complications of Lyme disease are Lyme arthritis and persistent neurological disorders that are similar to multiple sclerosis. Treatment for all of this is through antibiotics.
A cousin of a cousin of mine has what must be chronic Lyme disease and I think she caught it in the USA. I am not sure how it affects her, but I know she is on a special diet and I think it is the macrobiotic diet.
Raymond and I learnt all about Lyme disease when we first arrive in Canada over 42 years ago.
All you really need to know about politics in the UK is that it is totally archaic and it needs to be modernised and the politicians need to get out of the Palace of Westminster, which is the seat of Parliament and get in touch with the real world. All the ceremonial is completely mad. The devolved parliaments in Scotland, Wales and Northern Ireland are much more business-like and more modern. We need to get rid of the House of Lords and have an elected Upper Chamber. We also need a democratic republic and to get rid of titles. These are my personal views and I do not expect to see them in my lifetime.
I do hope you have an enjoyable time on July 4th. I doubt whether I shall see an England day in my lifetime either.
In the meantime, over here, the Brexit drama drones on.
Take care, Mary, and keep in touch. Too many of our group have gone missing!
Love.
Sylvia xxxx
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Hello Helenlouise,
Congratulations on your good news and keep that in mind all the time.
I do hope the wound will heal soon and that you can head off to Japan. You have earned a break.
Thank you for your kind words. I am glad to be an inspiration. Sometimes I find it hard to believe that 14 years have gone by since my diagnosis and that I have been doing this thread for nearly 9 years.
Take care.
Love.
Sylvia xxxx
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A rather windswept Sylvia having a look at one of our lovely hebe bushes.
The same hebe bush close up.
This bush had just come into bloom. We call it a bottle brush but its real name is a callistemon. I understand this is a wild plant in Australia.
This is taken from our main driveway.
Lace hydrangea in a bed near one of the entrances
Hello everyone,
I thought I would post a few photographs of some of the shrubs in our grounds.
Thinking of you all and hoping you are all doing things that make you happy.
Best wishes.
Sylvia xxxx
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your garden is beautiful Sylvia. The Australian plant is a grevillia, a native that comes in many varieties. It attracts all sorts of birds here, particularly honey eaters. We have a couple in our new garden. Thanks foe sharing
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Hello Sylvia,
I doubt many, if any, breast surgeons would refer patients to a homoeopathic hospital or practitioner these days. It's not a route that I would have considered for myself, but if patients want to combine homoeopathic medicine with conventional treatments I do think that oncologists should be accommodating. My oncologist asked me if I was taking supplements, (just vitamin C and turmeric with black pepper at that time), and asked me to stop for the duration of my chemotherapy. I didn't ask about homoeopathic remedies, I'd be interested to hear her thoughts on this and wonder what hospital policy is.
Like you, I don't know what to make of statins either. I wasn't aware that they had any influence on cancer, good or bad, until reading Chris Woolams' newsletter.
There's far too much badly thought - through information about cancer in the media. The media approach is sensationalist in so many cases - misinformation really. I wish editors would behave more responsibly. Having said that, my research into metaplastic breast cancer uncovered some very poor studies. Where very little is known or understood it's probably better to keep quiet. Fortunately metaplastic is rare, so I'm never confronted by media stories, though triple negative suffers more than it's fair share of inaccurate reporting.
The gardens of your complex are beautiful. Our hebe gave up after a particularly harsh Winter a few years ago, seeing yours has reminded me of how lovely it was. Everyone should have access to a garden or an allotment, a peaceful place in a mad world. It saddens me that there are schools without green spaces for children to play in or to have quiet times. So many schools have needed to place mobile classrooms where gardens, trees and green areas once were. Large playing fields are too often sold off for housing developments and housing developments too often have no gardens to speak of.
The weather here in South Norfolk is just right. Blue skies, sunny, but not too hot and a slight breeze. Hope it's just as good where you are.
Love,
Gill X
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Sylvia, Maryna and everyone else on this thread,
I just got the results of my mammogram and all is well - no sign of malignancy in the breast tissue which I think is good news. It is 7 years now since I discovered my tumour - so to those going through treatments and just finished treatments - there is hope!
My blood tests are all within normal range - my DEXA scan has not changed at all in the last 3 years - so the osteoporosis has not progressed. I still got offered the usual medications, but politely declined.
I am off to Quebec and Ontario to visit my children and grandchildren - so will not be back in Vancouver until mid July.
WIshing only the best for all the wonderful ladies in this group.
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Hello Gill,
Thank you for your latest post. At the homoeopathic hospital in Bristol there were many patients going through breast cancer that were also having homoeopathic treatment and the consultant was a breast cancer consultant. She worked with my breast cancer consultant and after my appointments reports were sent back to her. I had homoeopathic treatments every step of the way with my orthodox treatment. I never mentioned any of this to my oncologist, but she would have been aware of what I was doing through all the reports in my file. I was very glad to take oral Iscador on diagnosis and for five years.
I took any vitamins that I thought would help and generally did my own thing since it was my body.
I am not taking any prescribed medication that GPs seem to be pushing on everybody and never will. I make my own mind up about what I want to do.
I agree there is too much sensationalism in the media about cancer. As far as the triple negative hormonal status of cancer tumours go, I think the doom and gloom news comes from the fact that the drug companies are eager to find money-making drugs to put patients on for years once they have finished the standard treatment. I have always been positive about being triple negative and glad not to be on any nasty drugs. I think the type of breast cancer is probably more important than the tumour status, but that is my own personal view.
We have had a lot of dry sunny weather here in Exmouth, but we really do need some rain. It seems to be all or nothing. Exmouth is full of holidaymakers and the huge Sandy Bay holiday camp really overloads everywhere.
Do you have any projects for the summer?
Love.
Sylvia xxxx
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Hello adagio,
It was nice to hear from you and to read that all is well with your mammogram results. Congratulations on your seven years since you discovered your tumour. This will be great motivation for the newly diagnosed. I think you must be, after me, the one who has remained the longest on the thread and I want to say thank you for your loyalty.
I was glad to read the good news about your blood tests and your DEXA scan. I was glad to know that you had politely declined the usual medications. I did the same a long time ago and have no regrets.
I was interested to know that you are off to the provinces of Quebec and Ontario, because, as you know, I lived in Montreal for just over three years, and in Ottawa for over nine years and finished up in London, Ontario for about four years, before coming back to the UK. I do wonder how much these places have changed since then.
Please try to keep in touch and if you have photographs of your holiday please post them.
Love.
Sylvia xxxx
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Hello everyone,
Mary, Val, adagio, Helenlouise, Kath, 53Nancy, viewfinder, Susie, Gill, Flo, Jags56, Hanieh and Marias, and anyone else who posts and views. Have a good weekend and do what you enjoy.
Best wishes.
Sylvia xxxx
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The receptionist at my physio had breast cancer four years ago and has been on Tamoxifam ever since and has now been told that she should take it for ten years rather than the five she was originally prescribed. She has horrible side effects, I believe, though she didn't go into detail.
Susie
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Hi Mary,
I'm behind with my posts as usual. No excuses, just been enjoying the sunshine and getting the garden back into some sort of shape. Hope the temperature down your way drops enough for you to sit outside with a glass of wine at the very least.
Did you enjoy your 4th July celebrations? We don't do anything like that here. This needs to change as much of the country seems to be depressed at the moment and someone needs to inject some fun and sense of community back into our lives. This would also give the village a good excuse for another party and general booze up on the playing field. We're having a beer festival this week and a barbecue at the village hall on Saturday evening. On Sunday some of the chaps will get together to drink any leftover beer - waste not, want not and all that.
I've been reading about the earthquake in Southern California. Is the area where you were holidaying affected? Let's hope that it all settles down again and there isn't anything worse around the corner.
Private hospitals here are a bit 'crumpets and buttered scones', the food that I had was restaurant quality. I really enjoyed myself in the short time I was there. Private surgery in the UK is very expensive though and not that many of us have health insurance. I came back down to earth with a bump the first time National Health Service food was plonked in front of me. Michael brought in extra supplies to tide me over, not that anything tasted of much more than cardboard after the chemotherapy, but at least it looked like food.
Hope your shoulder is still healing well, it's been a long time since surgery. Recovery has certainly been tough for you.
Enjoy your weekend.
Love,
Gill X
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Hi Susie,
The NHS view is that Tamoxifen over ten years rather than 5 years lowers the mortality rate significantly. However, I know several older women who just took it for 5 years and they're still doing well years later. They were all post menopausal when diagnosed.
I wonder if the side effects of Tamoxifen are worse for younger women who naturally have more oestrogen for Tamoxifen to deal with? I also wonder about HRT, surely having oestrogen in our bodies for longer can't be a good thing in terms of breast cancer? I was asked by 2 consultant oncologists if I'd ever taken HRT.
Gill X
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Hi Gill,
Not sure how old Louise, the receptionist, is but might well have been pre-menopause four years ago. Her hair remains thin, thanks to the Tamoxifen.
I was also asked if I had taken HRT, which I didn't.
I think if you're going to have breast cancer, then post-menopause is best.
Susie xx
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Hello!!! In May 2019 a thoracoscopy for two nodules in the right lung , result triple negative .cancer metastasis in both nodules .. now in chemotherapy of Gemcitabine and Carboplatin for 6 months. I have finished one cycle.I have the plates in 550.
The doctor sent me a microsatellite instability test. She told me that since there was no instability in my test, I was not a candidate for immunotherapy treatment. Some of you did that test.
I'm really sad and worry.
I feel that I do not think anything deeply. my younger sister who lives in Bogotá came for 20 days to accompany us. My mother comes in August and will be here until November.
I have been very overwhelmed with all this and with the implantation of the subdermal catheter and I also had a biopsy of subcardinal lymph nodes that also came with metastasis of breast cancer. so just today I have had some energy to enter to visit them. I trust you are all in good health and enjoying the summer .
In Colombia killing us every day !! those of the extreme right who for many years forged paramilitary armies that supposedly more than 10 years ago surrendered their weapons during the Uribe administration. now they are systematically killing social leaders. the government says that is not true but the figure amounts to 700 or more. so the news from my country is not encouraging.
I'm so sorry to be so negative. And depressed.
Abrazos
Marias
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Hello Marias,
It's good to hear from you even though your news is not so good. I'm sorry that you have triple negative cancer in both lung nodules and that you're not a suitable candidate for immunotherapy. How are you coping with Gemcitabine and Carboplatin?
I'm not at all surprised that you feel overwhelmed, you have had such a lot to take in. You really don't need to think about anything deeply if you don't want to, taking each day as it comes might be the best plan at the moment. I'm so glad that you have your mother coming in August, this isn't the time to be alone.
Here in the UK we haven't heard very much about the problems in Colombia recently. However, We have known about the political and social unrest for some years. It doesn't surprise me that the far right are killing social leaders. As always, it is the the law abiding majority or those determined to raise issues of social justice, who suffer most. The world appears to have gone mad!
Dear Marias, I will continue to think of you, pray for you and to light candles for you.
With love,
Gill X
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Hi Susie,
I agree that post menopause seems to be the best time to have breast cancer, whatever the type. Not sure I'd be keen on taking Tamoxifen for 10 years as it can can cause cancer of the uterus. Oh the joy of being born female!
My wig itches, but hair isn't long enough to be cut into something that makes me look vaguely normal.
Gill X
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Hello Marias,
Thank you for your post. I was so glad to hear from you, but very sorry that you have metastases to the right lung and that this is triple negative. I am not surprised that you feel sad and worried. Concentrate on the positive side of this news and the fact that you can have six months chemotherapy with gemcitabine and carboplatin. Tell yourself that you will get through this and keep in touch with us to support you.
I was glad to read that you have some family support and that your sister from Bogotá came to visit you.
It is good that your mother will come for a long visit. I am sure that will give you a lot of support.
It is so sad that there is so much trouble in Colombia. All this killing and warfare serves no purpose. The world is in such a mess and it is all to do with power, bullying, greed and sheer stupidity. Humans are destroying the planet. With warfare and fighting it is always the innocent people that are the victims.
Concentrate on yourself and getting yourself better.
Try to keep in close contact with us and share your worries and anxiety with us.
Lots of love.
Sylvia xxxx
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Hola marias
Gracias por tu publicación. Me alegró mucho saber de usted, pero lamento mucho que haya tenido metástasis en el pulmón derecho y que esto sea triple negativo. No me sorprende que te sientas triste y preocupada. Concéntrese en el lado positivo de esta noticia y en el hecho de que puede recibir quimioterapia durante seis meses con gemcitabina y carboplatino. Dígase a sí mismo que lo superará y manténgase en contacto con nosotros para brindarle apoyo.
Me alegró leer que tiene algún apoyo familiar y que su hermana de Bogotá vino a visitarlo.
Es bueno que tu madre venga para una larga visita. Estoy segura de que eso te dará mucho apoyo.
Es tan triste que haya tantos problemas en Colombia. Todo este asesinato y la guerra no sirven para nada. El mundo está en un desastre y tiene que ver con el poder, la intimidación, la codicia y la estupidez. Los humanos están destruyendo el planeta. Con la guerra y la lucha, siempre son las personas inocentes las víctimas.
Concéntrate en ti mismo y en mejorarte.
Trate de mantenerse en contacto con nosotros y comparta sus preocupaciones y ansiedades con nosotros.
Mucho amor.
Sylvia xxxx
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Hi Sylvia,
You asked me to update you on my sister and I appreciate your concern.
She had a salpingo-oophorectomy and double mastectomy today. They wanted to remove her uterus but she said no at this time after hearing it was a 3-4 month recovery. The surgery was about 5 1/2 hours.
Her friend that is staying with her texted me about two hours ago:
"Linda is out of surgery. She gets an A plus. All vital signs stable. She has two small incisions in her abdomen. Her chest is bandaged with a drain on each side. She will be awake in an hour or so. Then transferred to her room. The surgeon is VERY happy with the outcome."
I'm so relieved. Thank God for the skilled surgeons and a sister so full of courage!
My thoughts are with you all!
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Morning all,
I was wondering if anyone had read Anticancer by Dr David Servan-Schreiber, a psychiatrist who found he had a brain tumour at the age of 31? I downloaded a sample to my Kindle this morning and it seemed very readable so I've gone ahead and bought it. One of the things he mentions in the introduction is the negativity surrounding all talk of cancer and how counter-productive it is.
Susie xx
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Hi, Susie
I have this book you mentioned "Anti-Cancer, A New Way of Life". I like it, I donated most of my other books on cancer, but kept this one. I was also interested in what he says about negativity, and the bad effects of it and also stress, on one's body and mind. He has quite a story to tell about his own battle with brain cancer.
Mary
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Hello Viewfinder,
Thank you for popping in to let us know how your sister got on.
I was glad to know that she is recovering well after all that very long surgery. I can understand that she did not want more surgery with such a long recovery time.
I was glad to know that she has a friend staying with her.
I can understand how relieved you must be that all has gone well.
Take care of yourself and pop in when you can.
Love.
Sylvia xxxx
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Hello Susie,
I did read the book Anticancer by Dr David Servan-Schreiber quite some years ago now. I was going to say that Mary had read it as well, but she popped in before me. I knew the name because there was a famous politician by that name when I was in France and I think they were brothers. The doctor did die eventually.
I am sure you will find the book of great interest.
I seem to remember that we discussed it on the thread in the past.
Love.
Sylvia xxxx
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HI, Marias
I am so sorry the docs have found triple-negative metastases, you have certainly had a lot to deal with. I hope the chemo is not too difficult. I can understand you don't feel you think anything deeply, just getting through treatment is quite enough to think about now. I pray it is successful.
I am so glad your sister from Bogota is visiting you, and I am glad your mother is coming soon to stay till November. That will be so good for you.
The news you speak of from Colombia sounds very grim. I have tried to find news stories on these events, and I have not found any yet. That is a part of the world that we don't hear much about, I'm sorry to say. Most of what I did see was about pipelines and oil. Please stay safe, and enjoy your time with your family.
I am still lighting candles for you, and Hanieh too. We haven't heard from Hanieh for a long time.
Best wishes, hugs and love,
Mary
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HI, Sylvia
I can't believe it's been a week since I've posted to you, it's been busy through the holiday, and then my arm is better so I can do more outside, thank goodness. My farm is now very dry, we are in the time of year when rain is widely scattered and I count myself lucky if rain falls on my things so I don't have to water.
I was sorry to read that the doctor who wrote "Anti-Cancer", has died. He wrote a powerful book about his experience, and I agree with many of his theories about causes of cancer.
I got my copy of WDDTY, with Fibromyalgia being the subject of the cover. I haven't read it all yet, but only a few pages.
I am sorry to see that Marias continues to have serious problems, it is hard to fathom all that she has been through.
I enjoyed seeing the pictures of you and the flowers you care for in your surroundings. You and the flowers look great!! Here it is now very hot, and the flowers I have are looking a bit wilted. I will have to get out tomorrow morning and water my pots.
The politics in both our countries are strange indeed, and the politicians are not very admirable people for the most part. With exceptions.
I will close for now, and will talk to you again soon, my friend.
Love, Mary
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hi Everyone
Back from my month holiday in the sun and back to dreary winter! Flu has hit very hard here so we have been extremely busy on the public health front.
I have completed both a clinical assessment unit and a research unit at uni and did extremely well in them much to my surprise. It has been really great to be able to concentrate on other things and keeps my mind away from those dark places. Only have 3 units left to become a Nurse Practitioner
My aches and pains have been better with weekly massage but i still manage to fixate on the worst things. Due for my mammogram in sept and terrified about that! Can see some changes in the shape and density of my irradiated breast but no lumps so I'm hoping it's radiation changes from the boosts!
Been visiting my grandsons which is a joy and keeps me focused. Stay well everyone
Much love
Kath
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hi girls. My mom has 2 taxols left. We see the BS today to scheduke MRI for breast. I am truly so scared. I keep thinking the absolute worse that the chemo didn’t work and it turned into mets. I really want some survivor stories.. my anxiety won’t let my thoughts re
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Hi ufcknights,
I do hope your mom is okay. It seems an odd time to have an MRI, when chemo isn't finished. Or perhaps the MRI will be scheduled for after she is finished with all treatments. Is she having some kind of problem, or has she complained of anything to the doctor? I feel as if we are missing some of the story. Again, I do hope all goes well for you and your mom.
Mary
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maryna, mri will be scheduled after chemo is done to prepare for mastectomy. She had a lumpectomy but after we thought about it we think a mastectomy would give more peace of mind. She isn’t having any complaints, she’s tolerating chemo well
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Hi ucfknights
So she is doing a mastectomy for peace of mind, and then the surgeons will be sure they have everything. Sounds good to me! The docs were going to do lumpectomy on me, but since my breasts were small, they said there wouldn't be much left after getting clear margins around the tumor. So they took it all and I was glad. I do still have left breast.
In answer to your PM message, I am doing good, it did take me a long while to get over the chemo. The neuropathy is still with me. I injured my shoulder during chemo and didn't get surgery until March '19, still getting over that.
Talk to you again, Mary
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