Calling all triple negative breast cancer patients in the UK

Hello adagio,

It was nice to hear from you and to know that you are fine.

It is probably better to be busy than to have time on your hands, which can make your mind wander to perhaps negative thoughts. It does sound as though you have been very busy with family visits. I am sure you must appreciate some quiet time after all that work with family visits. I do hope you will now be able to get some rest. With what we have all been through we have to learn to pace ourselves and have a bit of a rest.

I have never taken bisphosphonates to treat my osteoporosis and I never intend to take them. I refused them back in 2005. Now that I have been discharged from the hospital with reference to breast cancer check ups, I shall probably not have any more DEXA scans, as it was all being arranged through the oncologist. I think once you have the osteoporosis you cannot reverse it but you can keep it stable. I just continue to self treat with Dr Best Strontium supplements (not the strontium ranelate that doctors can prescribe instead of bisphosphonates) but natural strontium citrate. I take this virtually every day, just one, along with one Solgar Calcium citrate complex and 4,000 IU of softgel vitamin D and just hope for the best. I continue with a calcium rich diet, largely made up of Alpro unsweetened almond milk, enriched with calcium (several different kinds) and soy plain sugar free yoghurt enriched with calcium. Occasionally I have canned wild salmon with bones. I also have seeds and nuts and eat calcium rich vegetables.

I am not sure about the use of bisphosphonates for breast cancer bone mets. I know they are used for patients who have actually have the mets, but I know from two consultants they are nasty with awful side effects. I can understand perhaps taking them if you have no alternative but I would not take them as a preventive for something that may never happen. I think doctors are trying to medicate patients unnecessarily. I cannot understand all the latest publicity about bisphosphonates to prevent bone mets in post menopausal women, when it was being used ten years ago. I think the idea is to medicate all post menopausal women in the same way that they are trying to push statins on everyone and they also have dreadful side effects.

I was very surprised that you are penalised for bone density scans because you refuse medication. That is not acceptable. I have read so many times that bisphosphonates cause bones to be more brittle because they stop bone from renewing itself and you end up with a load of dead bone. I did read in What Doctors Don't Tell You that you can reverse osteoporosis through yoga. The exercises look complicated and I am not convinced. I think you could easily break bones through these exercises. I do worry about the osteoporosis but tell myself I am doing my very best through nutrition and tell myself, like you, that what will be will be.

I was glad to know that you have been reading the thread and so you are up to date. At the moment everyone has gone through treatment and we have no newly diagnosed women. This may be because women now have more information. I would like to hope that fewer women are being diagnosed, but the statistics would not seem to indicate this. Our statistics still say more older women are being diagnosed, especially those over seventy, so they may not be joining on line groups. The latest statistic is that two out of three women over seventy will develop breast cancer. I do not know how many of these will be TNBC.

It is pouring down with rain this morning and it was the same the day before yesterday. It looks as though we are getting all the rain we did not get for most of June and July.

Keep in touch.

Fond thoughts.

Sylvia xxxx

Hello Lindsay and everyone,

I have just been going through the Chris Woollams e-mail in more detail and have discovered that the information on apricot kernels is actually a video of Chris Woollams explaining what they are and what they do. I am sure that those of you taking them will find it interesting. This is a five minute talk followed by a45 minute talk by him with lots of information about how cancer treatment has gone over the past ten years. Try to have a look at it and let me know what you think. The link to all of this is:

https://www.youtube.com/watch?v=TXTyzOFu-RQ

https://www.youtube.com/watch?v=jeGZwVoCcz8

I think that Jackpot (Gill), Marymargarethope and Amanda were among those taking apricot kernels and I have been taking them for ten years, before treatment, all through treatment and now.

Thinking of you all.

Sylvia

Hello Hanieh,

I was glad to know that you are back with your friends doing early morning exercises in the park. I liked your joke about the rain being sanctioned and that it is now OK for it to rain!

I was interested in what you said in your information about the history of Persia. I shall certainly look up about the charter.

I was wondering whether you looked up anything about Chris Woollams of Cancer Active. I am sure you would find the video part especially interesting. He is a fantastic lecturer and I was completely absorbed in his 45 minute video. He is such a good communicator. I must find out whether Cancer Active is still publishing their magazine, icon. So much today is electronic.

I do hope that all continues well with you.

Fond thoughts.

Sylvia xxxx

Hello Hanieh,

I just wanted to say that I looked up Cyrus Charter of Human Rights Cylinder and read some of the information with great interest. I found a picture of the cylinder and also a chart with the writing that is on it and a translation in English. I also discovered that the cylinder is on view in the British Museum in London and that there is a copy in the United Nations building. It just shows how we can educate ourselves on this thread besides giving cancer support and information.

Best wishes.

Sylvia xxxx

Hello Hanieh

Thank you for your posts. It is always a pleasure to read them and I do like to keep educating myself. It would be nice if we could get politicians to carry out the wishes of the people they are supposed to represent.

I am glad that you have been reading some of the information that Chris Woollams of Cancer Active puts on his website. I have been following him for ten years and always look forward to his e-mails. He does know what he is talking about. You can find everything you need to know about cancer on his Cancer Active site and he now has Health Watch for information on all kinds of illnesses. I do subscribe to the Cancer Active magazine but I have not had one for a long time, so I am going to phone tomorrow to find out whether it is still being produced. He has dedicated himself to cancer ever since his daughter Catherine died as a young woman from brain cancer. I have huge respect for this man. He does do personal prescriptions via Skype but I do not know whether that is available in your country.

It is my pleasure to share any information that I find. On this thread a long time ago we said that knowledge was power and I firmly believe that.

He has written quite a few books but I think you have to order them at a certain address or on line. I do not think you can download them. I am sure you can find a list of them on his website. The Rainbow Diet is very famous but he has also written Everything you need to know to beat cancer. Another book is Oestrogen, the enemy in our midst.

It must be very distressing for you to be putting on weight because of the Dipherline. I am putting a link for you to look this drug up again because it says that the drug is used to treat prostate cancer that has spread and that it MUST NOT be given to women or children. It looks as though for you it has been used to bring about an early menopause. Is this menopause to be temporary or permanent and why is it being done?

http://www.news-medical.net/drugs/Diphereline.aspx

I am not a doctor but I know that older menopausal women tend to put on weight and I think it is something to do with diminished oestrogen. I also know women that have had hormonal breast cancer and are put on tamoxifen tend to put on weight. As I have said before, I would try to get more information.

I am sorry that I cannot be of more help, but I have just never heard of anyone on the threads taking Dipherline.

I do hope you succeed in ordering The Rainbow Diet. In the meantime, just remember to eat a diet of brightly coloured fruits and vegetables – carrots, sweet potatoes, tomatoes, peppers of all colours, broccoli, cabbage, spinach, Brussels sprouts, cherries, black currants, blueberries, blackberries, strawberries, red and black grapes, oranges, kiwis and so on.

Take care.

Love.

Sylvia xxxx

Hello Hanieh,

Thank you for posts and all the lovely photographs. You and your daughter look so alike, as we say in English, you are like two peas in a pod. The three of you look like a nice happy family. I hope you are enjoying your time in the mountains.

I do remember going on cable cars when I lived in Ottawa, Ontario, Canada and went for a holiday in British Columbia, right over the other side of Canada. We flew there and went touring. We went on cable cars over the Rocky Mountains in Vancouver and Whistler. My husband also walked across the Capilano suspension bridge in British Columbia. I did not go across that bridge, as I found it too frightening.

I do hope you will get these injections sorted out with the second opinions.

As for the books, your cousin may have to order them from Cancer Active. They are not available in ordinary bookshops.

Fond thoughts.

Sylvia xxxx