Calling all triple negative breast cancer patients in the UK
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Hi Pam
Hi Pam
I understand also that adding in platins is a new approach for some women and I wonder if it's related to tumour size. Like you, mine is around 4cm. I finished my last EC last week and start 9 weekly tax/ carbo at end sept. Good to hear that someone else is experiencing the same re in otherwise it feels like a very lonely and scary place too be
Chris xx
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Hello Val,
It was nice to see you back on the thread. I do hope you are making progress after the stroke.
I was wondering whether tests about green tea and turmeric and their effects on chemotherapy have been carried out? I doubt it.
I am glad you are now enjoying your green tea. I drink lots of it every day and have tried different kinds. I do love Clipper Green leaf tea as well as QI organic gunpowder green leaf tea. I love the bitter taste. I also have Clipper decaffeinated green teabags. I also have turmeric but take rests from it. I buy the powder and mix it into organic hummous with some black pepper. I have also found fresh turmeric in a local store here. I usually just wash it and cook it with some carrots.
Keep up the good work with recovery.
Fond thoughts from the UK.
Sylvia xxxx
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Hello Kath,
I was glad to know you had a good chat with your oncologist today. Two way conversations is how it should be. It is good to know that the lumps are just fatty lobules.
I do hope all goes well on Friday with your next dose of AC.
Enjoy Wednesday with your grandchildren.
Fond thoughts.
Sylvia xxxx
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Hello Chris,
I hope you get your computer sorted out. Computers seem to have a mind of their own.
As for green tea and avoiding it during chemotherapy, I can see no reason. Green tea is said to be anti-cancer and is full of antioxidants, phenols and catechins, all said to be anti-cancer. As I have already said in previous posts, I decided long ago that I would follow my own diet during all my cancer treatment and ever since. Each of us has to decide what we are going to do. As far as I am concerned, I am anti meat and anti dairy because of growth hormones. My own breast cancer consultant told me she thought dairy products were one of the risk factors in breast cancer. My everyday nutrition consists of a varied diet of fruit and vegetables, organic where possible. I eat a mixture of nuts and seeds (almonds, Brazils, walnuts, linseeds, pumpkin seeds, sunflower seeds and sesame seeds). I grind up the seeds fresh each day and use them as a base with yoghurt, plain, no sugar, soy and live culture. I have Alpro unsweetened almond drink with calcium in it. For protein I have beans and pulses. In addition to all of this, I have some wild salmon which I buy frozen. I eat lots of cooked tomatoes for lycopene and some cold Atlantic prawns or crayfish tails for iodine. I have just the vitamin D3 and a strontium tablet for my chemotherapy-induced osteoporosis. I steer clear of all medication and keep supplements to the minimum.
We each have to do what we feel fit.
Take care fond thoughts.
Sylvia xxxx
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Hello everybody,
I am just posting to say that this thread that I started sometime ago, has been active now for exactly six years. I started it on September 12th 2010 because I felt that in the UK we were in the dark ages about TNBC. I actually discovered breastcancer.org in 2009 when I was trying to find information about an overactive parathyroid gland. I had been diagnosed with this at the same time as I was diagnosed with breast cancer, on June 20th 2005. I was told that an overactive parathyroid gland was rare, dangerous because it caused calcium to be leached from the bones into the blood and that it was usually caused by a non-malignant adenoma on one of the four tiny parathyroid glands. I was told I would need surgery to remove this adenoma and then everything would be normal. The parathyroid problem was diagnosed when I was found to have high levels of calcium in the blood and the oncologist thought my breast cancer might have spread to the bones. Fortunately it had not. The parathyroidectomy was not done until November 2009.
While researching I met a fine woman called sam52, and we became great friends on the thread. She had been diagnosed with hormonal breast cancer and also an overactive parathyroid gland. We posted a lot and went through our surgeries at the same time. We posted a lot on the thread High Calcium.
It was sam52 who told me about parathyroid.com and also about Swedish research which thought there was a connection between breast cancer and parathyroidism. My consultant told me my parathyroid problem had preceded the breast cancer. Swedish research was not conclusive about which caused which or whether there was another factor that had caused both.
sam52 started a thread on here about breast cancer and parathyroidism.
I would like to say that I started the thread about TNBC all those years ago, have met lots of wonderful people from around the world and am very proud of all of you who have kept this thread going.
Best wishes to all of you.
Sylvia xxxx
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Dear Sylvia,
I'll have to catch up with everything properly in a few days. I just wanted to say that I'm thankful that you started this thread, and that its participants are so attentive and supportive. I strongly believe that we get our best information by collaborating with each other, and by advocating for our care.
Thanks so much for all that you do,
Pam
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Dear Sylvia
Although I am new to this site I've already found it an invaluable support and I'm sure that in the 6 years since you started this thread you must have helped scores of women through what is undoubtedly one of the most difficult times in their lives. I really would like to thank you for persevering and continuing to be a real beacon of hope. Many other people may have moved on with their lives long ago
Chris xx
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Hello Pam,
Thank you for your kind words about the thread. It makes all the hard work worthwhile. I agree with you that the good thing about these threads is that we get to communicate with people who can talk about what they have experienced and help others get through this difficult journey.
I am sure you will catch up in time. I do hope all goes well on September 20th.
Sending you fond thoughts.
Sylvia xxxx
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Hello Chris,
Thank you for your kind words about the thread. It makes me so happy to know that you are finding invaluable support here. A cancer journey is one that you do not need to have alone. There is help all along the way. You can come here and clear your mind with everything and anything that worries you.
I hope and believe that all those great women that have been on this thread have gone on to lead happy, healthy and fulfilled lives. I think there were only a few that were having more difficult problems and am not sure what may have happened to them. It would be nice if anyone who wants to move on could just tell us so. We all understand that desire to move on, but if we are not told that this is what a person wants to do now, we are left wondering what has happened to them.
How are things going with you?
Sending you fond thoughts.
Sylvia xxxx
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Hello Mary,
I thought you would like to know that I received the latest email from Chris Woollams yesterday, September 13th. It is entitled "So what's new in the great big world of health?". You asked me to remind you when I received one. I have not had time to look at it yet.
Did you happen to read the article in the Sunday Telegraph a couple of Sundays ago about the increasing numbers of cases of cancers in young people, especially in the 14 to 25 age bracket. I think it is shocking.
We have not heard from you in a while, so I was wondering you had gone on a trip. I have suddenly remember you said you were going to a conference in connection with Ty Bollinger, but I cannot remember when.
I hope to hear from you soon.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia and all
Sylvia, again thanks a million for starting this thread and being so supportive to all TN ladies from all over the world. I'm sure the universe will appreciate all this kindness. Tomorrow we are going to take a trip to Russia , yet I'm not as happy as I had supposed I would be. In fact, one of my colleagues who was so nice to all passed away in a car accident. I feel so miserable that I think I m not completely sure about my wish to have a long life any more. Since , as you grow older, you should witness the death of so many people around you who you care for very much. She was only 32 full of hope for the future. I miss her smiles so much. Yet, I'm happy for her as I'm sure she is having a rebirth. However, this sense of despair comes from my feeling of losing her and also the fact that she was killed with all her family except her poor mother who is well enough to understand what misery has happened to her. I feel really sorry for her.
Sorry to share my bad feelings with you.
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Dear Hanieh,
I am so sorry you have lost your friend, and what a beautiful young woman she is! Her eyes are full of light and life, it is such a shame that she had that accident. It is true, it seems so unfair, why are the young and healthy taken when they have so much to live for? It is a question with no answer. I sang at a funeral Saturday for a young man, 35, in apparent robust health, who died in his sleep one night. He and his wife were expecting their first child in a few weeks.
I'm also sorry this happened right before your trip to Russia. You must try and enjoy yourself, and let the lesson be that life is short for all of us and we must enjoy what we can of this world. Your friend would want you to enjoy your trip. It is indeed terrible that her mother is left alone of the family, that is a very sad thing. It is hard to know how to console someone after such a loss.
It happened that I not only went to a funeral Saturday, but also Sunday and Monday! The other 2 gentlemen were 89 and 90 years old. Those are easier deaths to accept, but still require many adjustments for the family, on top of the grief. I wish I could give you a hug, and tell you that it will be all right. It will get easier for you.
Please do try and enjoy your trip, and let us know how you are, and what you are seeing when you can.
My faith tells me that we will all be reunited some day, that is often consolation for me.
Talk to you soon, dear Hanieh,
Love, Mary
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Hi, Sylvia,
Thanks for telling me about Chris Woollams, he is still hiding on my computer! I found him however.
I will post a longer message tomorrow.
Talk to you soon!
Love, Mary
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hi everyone
Third AC tomorrow not looking forward to it at all
Cheerkath
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so sad
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Oh Kath. KNow we are holding your hand virtually. As someone recently done with chemo, believe it or not soon this will be in rear view mirror. Remember to hydrate and hopefully your se's won't be as intense.
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thank you! Soooo flat today but only 1 more AC left after thi
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HI, Sylvia and all,
I have not yet gone on the trip to the symposium put together by Ty Bollinger, that is in mid-October.
I have been feeling down and tired lately. I think I have never got over the chemo fatigue, along with the neuropathy it gets to me. I saw acupuncture doc yesterday, I told him to work on my energy levels, please. I could tell a difference today, for the better. I also had an appointment with my sinus/allergy doctor Tuesday because I had run out of a pill I take to help with the chronic sinus issues. She diagnosed me with a sinus infection, and I now am on 2 rounds of antibiotics. Acupuncture doc doesn't like antibiotics but he agreed I need to get rid of the infection. Perhaps that will make me feel better as well.
Occasionally I get entrenched in a self-pity party, it is not productive but hard to climb out.
On to Chris Woollams:
He talks again about the importance of Vitamin D when you have a cancer diagnosis. He says that a Harvard endocrinologist, Dr. Michael Holick said "25% fewer women would die from breast cancer if they had enough Vitamin D in their blood." Apparently, proper levels of Vitamin D can also help in preventing Alzheimers, reduce Type 2 diabetes risks, strengthen bones, reduce gut problems, and help prevent asthma attacks.
Personally I do take 5000 mg.Vitamin D, but I stopped all supplements when I was on chemo at doctor's advice. Right or wrong, I don't know. But I was off chemo by first part of August 2014, I had a blood test in October and my Vitamin D level was very high. So apparently a person can build up the amount in the blood quite quickly, because I was not in the sun any time at all during that long chemo summer. That's just my outlook from where I sit. This is such a long article that I have linked to it, hope this works:
www.canceractive.com/cancer-active-page-link.aspx?...
The next article links to an article on Thyroid Cancer, Chris agrees with doctors who think it is overdiagnosed, with many cases being treated that may never have lead to malignancy.
In the next short article, Chris quotes researchers who say that it is possible that the most severe form of brain cancer could be caused by a very small parasite. This would have to be treated with strong antibiotics. This seems to me like a big breakthrough if true.
He talks again about inflammation being the cause of many diseases, and then goes on to talk about the shocking increase of cancer in children, with research showing that in the last 16 years children's cancer has grown 40%, with colorectal cancer in children growing at a rate of 200%. I think I will link to this one as well:
http://www.canceractive.com/cancer-active-page-lin...
Okay, I think I have gone on long enough, probably way too long! I will save some for another day.
I hope all are feeling well.
Talk to you soon, Mary
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Hi Kath,
Glad you only have one AC to go, that is something to feel good about. Hope you are feeling okay, and soon it will be done. If you are feeling flat, then you must just go with it and rest. I watched so much TV while on chemo. My husband was ill as well, and always watching TV, I now know a lot about WWll! You are doing very well, and you had no cancer in your lymph nodes, so that is also something to feel good about.
Talk to you later, Mary
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Hi, Val,
How are you?? How are you recovering from your experience? You must be doing well since you are now posting. I am so glad, did you get to go on your trip? I'm afraid I lost track of events the last couple of weeks. I am very glad to see you back.
Talk to you soon, Mary
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Hi Mary
How consoling your words were to me. I really could feel your kindness as if you were giving me a hug. I could not attend my friend's funeral but I am sure she is resting in peace. Right now I'm trying to take my mind off what has happened, as it may be my only chance to visit Russia. After 3 months of hard working I really needed this break.
Yesterday, after a three and a half hours flight, we arrived in Moscow. It's a really beautiful city which is located in a big jungle and near the river of Moscow. As we arrived in the evening , we couldn't see the city very much but we went to Russian national dance show , which was really amazing. It showed the Russia's whole story and civilization through a chain of amazing dances. It's really good to see other people and other cultures. Our hotel is located opposite the building of Foreign Affairs Ministry and it has a very good view of the city. Yet the weather is cold and rainy which is in a sharp contrast with the summery weather we had in Tehran.
Last night I saw some people in the lobby speaking American English and also some British people. How lovely it would be for me to visit an English speaking country one day. Here in Moscow, the people's extreme sense of nationalism has not let them learn English well and you can rarely find any English words in their signs and street names. This has made it really difficult for the tourists to find their ways. In Iran, under each Persian sign and name the English equivalent is noted.
Today, we are going on a city tour. I hope this heavy rain let us see enough of Moscow.
Lots of love
Hanieh
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thanks Mary still so very scared th
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Hello Hanieh,
Thank you for your kind words about the thread.
I was so sorry to read about your friend and I can understand how upset you are about her being killed in a car crash. She looks so beautiful in the photograph.
Life is unpredictable and we never know what is going to happen to us each day and indeed when we go to bed, we never know whether we are going to wake up. We just have to accept the moment we are living and never take life for granted. You must just give yourself time to grieve.
It is true that the longer we live the more likely we are to have to say farewell to many people in our lives.
Try to enjoy your visit to Russia and tell us all about it.
I saw on the news that in Muslim countries Eid has been going on. Did you have a celebration?
I have a lot of catching up to do on the thread, so talk to you later?
Love.
Sylvia xxxx
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Hello Mary,
Thank you for two posts on the thread and for your PMs. I shall answer all of them later today or during the weekend. I do understand all that you are going through.
Hello Kath and Val,
Thank you for your posts. I shall talk later.
To everyone, keep your spirits up and try always to look on the bright side and on this thread we must all try to help one another through whatever problems they are facing.
Very best wishes to all of you. Try to do something special this weekend.
Sylvia.
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Hello again to Sylvia and all here,
Delving back into Chris Woollams newsletter: He addresses the issue briefly of Canadian research showing that antidepressants are often wrongly prescribed for things like insomnia and pain. I don't know about that, I do know that over the last couple of years I have been offered antidepressants several times; I tried them once but did not like the side effects and stopped. I have several friends who take them and like the results.
In the next short article he gets into the subject of Triclosan, which was first approved by the FDA as a pesticide. It is now also used in common household products and even toothpaste and mouthwash. He quotes the FDA as saying they are now reviewing its' safety in humans. I would hope so if it has already been put into toothpaste! I know I have become much better at reading labels, but some of the chemical names on cleaners and things like shampoo, toothpaste, etc. are a challenge.
Lastly, he quotes a study done by New York University Langone Medical Centre. It is on the possibility that obesity leading to Type-2 Diabetes onset could be influenced by repeated doses of antibiotics, especially in the young. I know we have been hearing for years how antibiotics are over-prescribed, which can also hasten the advent of super-bugs, which our current antibiotics are struggling to control.
Also, I would like to thank Sylvia for starting this thread, I have been here about 2 1/2 years and have found it so beneficial. I have made friends, and found information, and comfort among kindred spirits.
Talk to everyone later, Mary
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Hello Mary,
I have just posted a PM to you in answer to yours. I do hope it will help. I do hope you will soon recover from your sinus infection. I know that none of us likes taking antibiotics but sometimes with an infection there is no choice. The problem with antibiotics is that doctors are dishing them out too easily without bothering to ascertain whether people have a bacterial infection or not.
I do hope you will feel some benefit from the acupuncture treatment.
You should not feel guilty about what you term "a self pity party". I think we all understand what you are going through over the loss of your husband.
I have not yet found the time to read the details of Chris Woollams' latest email. I hope to do it today. I know that the two of us discuss these emails, but I do not know whether other people on the thread read them. I certainly cannot remember anyone else commenting on them. Of course it is their choice but I think Chris Woollams has always been way ahead of orthodox medicine. I think all of us at least know that cancer treatment is awful, not really the answer for the future, but it is the best we have. I am not even sure about immunotherapy. It sounds good but from what I have read about the medication used, it has bad side effects and there have been deaths. I still think cancer is caused by lifestyle and our industrialised world and the answer lies in prevention.
I shall get back to you about the latest newsletter as soon as I can. Like you, I have ups and downs and sometimes feel very pessimistic about life. Most of the time I try to shake it off.
I do believe in the great importance of vitamin D. Congratulations on having such a good level. Thank you for the link.
I do believe that inflammation is at the root of all our chronic illnesses.
I have been reading articles in the papers about the increase in cancer in younger people.
We have to remember that this latest email from Chris is based on bits and pieces that he has been finding in the media and they are not of his own invention.
Once again, many thanks, Mary, for all the effort that you put into this thread. I hope everyone appreciates the time and effort this takes. I know from six years of doing this that you have to do a lot of hard thinking when you are composing a post. It is not something that you just send off in a few minutes.
I do hope you will take care of yourself and surround yourself with your family and friends to help you through all these difficult moments.
Love.
Sylvia xxxx
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Hello again Mary,
I am still reading through the thread and catching up.
I am totally against antidepressants and I think that they are probably one of the causes of dementia. Like antibiotics, doctors are too fond of dishing them out and goodness knows what they are doing to peoples' brains. I certainly do not think they should be used for insomnia and pain. I also think that dementia is often a form of loneliness and despair. I think people need other people to talk to more than anything else.
I shall certainly read about Triclosan. It proves what I said to you about a toxic world. Man is supposed to live with nature not against it. I am certain we are slowly destroying the planet.
I shall also be reading that article about obesity, type 2 diabetes and repeated doses of antibiotics, especially in the young.
Many thanks, Mary, for all that you do.
Autumn has started here in Exmouth and the leaves are falling fast. We are in a state of muddle and chaos and Brexit is not going fast enough. The Labour leadership contest is coming to an end. The shops are already full of Christmas stuff, especially sugar goodies, even though we know it is poison to our bodies.
Love.
Sylvia xxxx
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Hello Kath,
How are you feeling today?
Hello Val,
How is everything going with you today?
I do hope I have not missed anyone out while I have been trying to catch up.
It would be useful to know if any of you are reading the Chris Woollams' newsletters and what you think of them.
Do you think that we are all suffering from too much information?
Sending everyone best wishes.
Sylvia xxxx
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hi Slyvia not too bad today physically well hydrated still really nervous about the lumps and bumps I have feel a bit sore bit I reckon it's because I'm poking at them all the time! 1 more AC to go then on to paxitaxol. Still need to keep looking at one day at a time and totally loving having my grandsons her
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Hi Sylvia, Mary and all
Today was our second day in Russia and tomorrow we will leave for Saint Peterborough. The weather is cold and cloudy but everything looks so good here.
So far,we have visited so many places . The many Churches , the Public university, Kremline Palace, and a lot more places. It's really worth visiting. I also learnt alot about the history of Russia and the Soviet Union.
I would like to post some pictures :
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