Calling all triple negative breast cancer patients in the UK
Comments
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Shofti
I am praying this is fat necrosis and sending you lots of hugs. Thinking of you at your appointment tomorrow .
Love Amands xx
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Hello Mary,
Thank you for your post. I do agree with you that there are all sorts of risks in our development of cancer from the industrialised, chemicalised and generally toxic and artificial world in which we live. There is not a lot we can do about most of it, except to try to live as simply as we can.
I do hope you have a good time at your brother's. That is a very long drive. I remember very long drives similar to that in Canada, but outside of the cities the highways were empty.
Sending you fond thoughts.
Sylvia xxxx
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Hello Hanieh,
Thank you for your post. I am so glad that you enjoyed the photographs. When I have more time I shall try to take some photographs of Exmouth.
It was interesting to know that, like me, you like blue and green.
I think all of us people are aware that there is a great difference between the ordinary people of a country and the politicians that are laying down the law. It is a pity that we cannot have a mass movement for world peace and to make war illegal. It serves no purpose to destroy buildings, peoples' homes and innocent people, and yet that seems to be the history of the world.
Thinking of you and sending best wishes.
Sylvia xxxx
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Hello shorfi,
I just wanted to say that I hope everything will turn out fine tomorrow. Try not to worry. Waiting is the most awful thing, and we have all been through it. Hang on to the fact that you are coming up to your third anniversary and you have got through all that.
Sending you fondest thoughts.
Sylvia xxxx
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Hello Amanda,
I was glad to see you giving support to shorfi. We all know that feeling of fear and anxiety when we are waiting for the results of a test or examination. We all know that huge feeling of relief when we are told we are fine and that great disappointment when something is wrong and we have to prepare for another challenge. We are all hoping for good news for shorfi.
How is work going? What is your next holiday project? Are you taking any interest in the referendum?
Sending you best wishes.
Sylvia xxxx
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Hi shorfi
You are deeply in my thoughts and prayers. From now till the time I hear your good news I just pray deep in my heart that everything will be OK with you.
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Hello to everyone,
Have just got back to Vancouver after 5 glorious days in Washington DC - the capital of the USA. I found it to be a charming city packed with stunning architecture and wonderful buildings, statues and sculptures all over the place. I could so easily have spent a couple of weeks there and still not be tired of all there is to do and see. I walked a lot and fortunately the weather cooperated - it was a bit cold at the weekend, but generally sunny.
Mary - I visited the Library of Congress, and I was blown away by the magnificence of the detail in the interior design - the intricate carvings on the pedestals, the corinthian columns, the marble staircases and balconies. Just beautiful - I loved it. I also enjoyed the National Gallery of Art very much. The Supreme Court building is also stunning. I went to the Arlington National Cemetery and saw the changing of the guard, visited the Washington National Cathedral and enjoyed the choral evensong. We also enjoyed strolling through Georgetown and looking at the beautiful VIctorian townhomes. I certainly wouldn't mind another visit to Washington one day.
Sylvia - do you get your WDDTY magazines delivered to you, or do you subscribe to the online edition. I got an e-mail announcing that the subscriptions are now available in the US and Canada, and am considering a subscription. I think I will go for the online one since I will be travelling a lot next year and then I will be able to read it no matter where I am. Currently I only have the free membership which is a bit frustrating.
I would be interested in hearing your thoughts on Tagamet?
Thanks for sharing the poem - I love it, and I will reread it again more slowly.
That was quite the storm in Exmouth. Hopefully Spring will come for good very soon.
I am well, but busy. My husband and I are planning our trip to Australia and New Zealand and it is quite a lot of work. We have the flight there booked for September 19th and we are returning December 19th - now to plan an itinerary for the in between time. I have never been away from home for this long before, so it will be a challenge for me.
Shorfi - my oncologist told me exactly the same thing about the 3 year mark - but it is always a worry no matter what we are told. Wishing only good things for you.
Amanda - I would like to visit Barcelona - I have heard that it is a great city.
The links are wonderful, but I find them overwhelming, and like Hanieh I am feeling the need to step back from cancer focussed issues. Although my enquiring mind and curiosity always seems to over ride this need.
Sorry, this is so long. Warm thoughts to everyone.
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Here are few photos for you to look at.
Yet another sunrise.
Seagull studying the magnolia tree in the Exmouth Magnolia Shopping Centre.
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Shorfi,
Wishing you a very good report today, waiting is rough, I know.
Let us know what comes of it all. I will be thinking of you. I am approaching 2 1/3 years out, sometimes I feel like I am wishing my life away, wishing I was farther out! I guess that is only a number.
High hopes for good news!
Mary
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Hello adagio,
Thank you for your post. I shall answer it later.
Fond thoughts.
Sylvia xxxx
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Hi everyone
I am feeling a bit better but reading the NI flu reporting it seems that there is a big outbreak of swine flu here, so perhaps that is what I have had.
The other news is that the charity has been authorised, which has left me floundering as I need to get the ball rolling on everything and think up how to fund raise.
Here is link 11:
http://www.cancertherapyadvisor.com/breast-cancer/...
Michael
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Hi Sylvia
What cool pictures. Thanks for sharing them. Plants and flowers always soothing.
I'm happy to hear everything is OK with shorfi. If only these scare would leave us for ever!
Love
Hanieh
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Hello adagio,
I was glad to read that you had a very enjoyable stay in Washington DC.
With reference to the WDDTY magazine, at the moment I am buying it in one of the two natural food stores that we have here in Exmouth.
Before that, I was buying it on-line. I do not think there is much difference in the shop price from the on-line price, unless you buy it on-line from the actual publisher. Since you are going travelling you are probably right to subscribe on-line for either the hard copy or a digital one. I always prefer having a hard copy of anything, as I do not think it is good for me to spend too much time at the computer. I am not an enthusiastic computer user and think we should be wary of too much technology. I love books, magazines and newspapers, but I could never prefer a Kindle to a hard copy book. I think there is an epidemic of smart phones and are causing all sorts of social problems and will probably cause health problems in the future.
I was wondering why you were asking what my thoughts are on Tagamet (cimetidine). All I know about it is that it belong to the anti-ulcer group of drugs. I looked up cimetidine in my BMA Guide to Medicines and Drugs, and saw that it belongs to the group H2 blockers, which is something to do with histamine. Are you taking it for allergies?
I can imagine how busy you and your husband must be planning your trip to Australia and New Zealand. I hope you will be able to keep in touch from time to time, just to give us some cultural aspects of these two countries. You do not have to mention cancer in them. We all benefit from knowing how other people live.
With reference to the links, we cannot take in all the details. I just try to make a synopsis of the main points. Our brains cannot hold all that information.
Thinking of you and sending you best wishes.
Sylvia
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Hello Michael,
I was so glad to know that you are feeling better. I do hope you do not have swine flu, as I understand it is quite nasty. There seems to be so much infection and illness around and I think this country needs a good clean up. I think it all needs a good dose of Dettol. I have seen so many people suffering from bugs that do not seem to clear up. I do wish you better.
It is good that the charity has been authorised and I do hope you find a way of raising money. It is not easy. I do not like the way Cancer Research raises money through cakes and coffee mornings and wine and cheese evenings. Sugar and alcohol are the enemies of cancer patients and these should not be used to raise money. A good idea might be something connected to exercise. I recently gave some money here in Exmouth to a young woman who is walking with a group from The Lizard to Land's End in Cornwall. That is about sixty miles and the group is camping out at night. It is to raise money for Alzheimer's and dementia.
Thank you for link 11. I shall try to deal with that during the weekend.
Have you now come back from Essex and Ibiza?
Sending you fond thoughts.
Sylvia
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Hello Hanieh,
I was glad to know that you liked the photographs. The weather is not great here, heavy rain today but Spring is bursting forth as the days get longer. I always look out for the yellow bloom of the forsythia shrub which is about the first shrub to bloom in the grounds here, followed by the yellow bloom of the broom shrub. I also look out for the bright flowers of the evergreen camellias and azaleas. The bulbs are very showy, but they do not last long.
I was glad to learn through your post that shorfi is OK. Did you read it on the TNs or have I missed a post here? She must be feeling very relieved today. I do hope we shall hear from her. The check ups are useful, but they do put us all through days of anxiety and worry.
Sending you fond thoughts.
Sylvia xxxx
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Hello everyone,
I just wanted to wish you all a good weekend and to enjoy your days and switch off cancer.
Once again, a huge thank you to Mary, adagio, Hanieh, Amanda and Michael for all the effort you make on this thread.
To those going through treatment, just concentrate on getting through with your surgery, chemotherapy and radiotherapy. Do not fill your heads with too much other information and always be your own best advocates.
Best wishes.
Sylvia
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Hello adagio,
I have finally found the time to read through the latest email letter from Chris Woollams, so I now understand why you were asking me about Tagamet (cimetidine) a common heart-burn remedy.To quote Chris Woollams. Tagamet or Cimretidine ought to play an important part in the majority of integrative cancer treatment programmes. Importantly, it should be taken by almost everybody who is about to undergo surgery and even, simply, a biopsy. Indeed, anyone fearing metastases should consider it.
He goes on to give the reason and again I quote. Research shows it can play an important role stopping cancer cells sticking together - thus preventing secondary tumour formation; and in stopping cancer cells sticking to other tissues - thus restricting metastases. Thus it is particularly useful in limiting cancer spread as a result of surgery or biopsy. It had some very impressive research results when used with colorectal cancer, where it greatly increases survival, and there is some evidence it might boost white cell count too.
This is a cheap out of patent drug and apparently doctors who know of its anti-cancer side effects prescribe it before, during and for up to two years after cancer surgery.
This was certainly not mentioned to me when I was diagnosed.
Have you, or are you, taking it?
I was very interested in the section of this latest newsletter entitled Can Cimetidine play a part in cancer cure?
Have you read this section?
I would think it would be useful for all newly diagnosed patients to have a read of it.
On the actual email the title is Reducing the risk of cancer spread. I clicked on this and then read about Tagamet (Cimetidine) in detail.
That is all for now.
Fond thoughts.
Sylvia xxxx
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HI, Sylvia, Adagio,
I am getting behind on Chris Woollams's posts, there was another one over the weekend. I also saw the article on Tagamet, sounds like a simple-enough thing to do. I was glad to see that we can now buy Woollams' books in USA at a reasonable price.
He covers so many subjects in the last couple of posts. He talks about research just starting on cannabis as a cancer cure. Very interesting. We have a couple of states now where it is legal to buy marijuana; I know an elderly lady who sends her children to one of them to buy a form of it that does not give the "high", but has the pain-calming properties of the drug. She has severe back pain, and using the drug helps her cope without the nasty effects of the opiates that are usually prescribed. I did not know there was such a preparation of this, sounds very useful. Of course, if her children get caught bringing it back here they will be in trouble.
Our little church choir has been hit hard over the last year. One of the ladies was diagnosed with liver failure about 9 months ago, she was immediately hospitalized and had to have a liver transplant. She is back home and comes to church but does not sing. Then a few months ago our eldest member fell in her home and broke her hip. She is now recovering well, but not coming up the stairs to join us. Yesterday I heard that another of our ladies was diagnosed with a very aggressive form of leukemia, and was immediately put on a treatment regimen to try and put it in remission. We are not sure how this will turn out.
Woollams posted one article on the effectiveness of breast cancer treatment. He does say that it came from a lady he spoke to and the statistics were given to her by her doctor when she asked about her prognosis. It is rather grim and I hesitated to even bring it up. We have to look at all the survivors we know and realize there is lot of hope!
We have had a string of warm, beautiful days; I have tried to get some things done outside. I find myself much achier after less work than I remember being before, not sure if that is from being out of practice or just more of the byproduct of what my body has been through the last couple of years.
My 6-month oncologist visit will be coming up in just over a week. I am making my list of questions to ask her.
Adagio, I am glad you had such a good visit to Washington D.C. I was there many years ago, but did not see as much of it as it sounds like you did. Nowadays there is so much political wrangling going on that when I think of D.C. it is in rather a negative way. Thanks for reminding me of all the history and beauty that is also there!
I did read on another discussion that Shorfi had a good test result.
Hope all are well,
Talk soon, Mary
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Hi Sylvia and all
Sylvia, as I was curious about shorfi , I checked the other thread and was so relived to see everything was OK with her. Despite being far away we all share the greatest symphaty that anyone can imagine. Though I have seen some unkind behaviours because of maybe some political trends, I feel deeply for all here. Two nights ago was what we call the Nigh of Wishes, and then I prayed for all who have been affected by this trauma. Though I m really busy with all my responsibilities, the thought of what has happened is always somewhere in my mind.
Right now I think I need to see my surgeon to feel more relaxed and as his clinic is always very busy , it's a really difficult task. I also have problems with my fat necrosis. I need to get it rechecked to feel peaceful again though it's only 2 month after my last check up and I'm supposed to have the next check up in 4 months. I think I'm getting more and more obsessional . Will I get better?
Love
Hanieh
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Hi everyone
I have been thinking about the objectives that I have set for the Janette Collins Foundation and one is "raising awareness of Tnbc." Is it really nessacerry to raise awareness? What would that achieve, after all the signs and symptoms are the same as any other breast cancer? I would appreciate input.
Here is link 12:
http://www.ajmc.com/newsroom/survival-of-the-fitte...
Michael
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Hello, Hanieh
Thanks for your prayers during your Night of Wishes, that sounds like a beautiful night!
The question at the end of your letter sounded like a plea, and it spoke to me because I have been feeling the same way and I shall explain. The odd thing is, that I feel better overall. But as I feel better, I seem to worry more about every little thing because I do not feel 100%. I worry because I feel much tireder than I used to, I can't seem to do 1/10 of the things I used to do, and I don't know if this is normal, or not? I have had things checked; heart test, chest x-ray, ovary ultrasound. My doc has even checked out my pancreas. I have had many spine MRI's over the last couple of years. I see my oncologist next week for my 6-month check-up and I have a list of questions to ask her. I guess I am saying I don't know what normal is anymore, I don't know if I have been damaged by the chemo, or if something is wrong. Everyone says I look great, and sometimes I feel very good. When I don't, the anxiety creeps in and that doesn't help anything. I wish I had a good answer for you; maybe some voices of wisdom and anti-anxiety will chime in here!
Peace to you,
Love, Mary
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Hello Mary,
I would not worry if you are getting behind with reading Chris Woollams' emails. I think we are all getting too much information and are probably suffering from information overload. It is not possible to keep all this information in our heads. The most important thing for us is that we have survived our cancer journey, are doing all we can to keep fit and healthy by keeping active and eating healthy food. None of us will ever know for sure what caused our cancer and it will be multi-causal. None of us knows what the future holds and we just have to live the day. We cannot know what each day will bring and how it will end. We must try to avoid negative stress.
Like you, I think it was good news to read that Chris Woollams' books are now available in the US and Canada. I wonder if they will come under attack from Big Pharma!
I was interested to read in his email under number 1 that the books can be bought in Australia as well and that the Truth about Cancer series is running again for free. Funnily enough, someone posted the link to me for the first video of the series. I told them I had been through almost all of the series.
Like you, I found item 2 very interesting – entitled Here is a herb you really should know about. I cannot see the harm in using cannabis for medical purposes. I read a long time ago how good it was for helping with multiple sclerosis. If it does "kill pathogens, boosts the immune system, kills candida, and reduces blood sugar levels. Oh, and it also has anti-cancer properties with cancers like breast, brain cancer, pancreatic cancer and lung tumours".
This article is obviously going to interest a lot of people, so if you want to know more you can click on the underlined heading A herb that fights cancer.
I think with these emails you have to pick out the parts that interest you the most and put them safely in the brain for future reference if needed. This is the way I do it. I remember first and foremost that I have read here that cannabis might be useful for breast cancer and other cancers.
Years ago, in Canada, our local MP used to send out a newsletter and one of the things he was trying to do was to get cannabis legalised for cancer treatment. You can see how far behind we are in the UK. The Lib Dems here, I think have been trying to get it legalised for medical purposes and to decriminalise it, but it is an upward struggle. It seems laughable that there is so much fuss about it but lethal drugs that kill so many, such as tobacco and alcohol are perfectly legal and acceptable, and a nice little income for the government.
In item 2 I clicked on the other underlined heading, Herbs have big benefits until Big Pharma messes with them.
It is sad to read about all the illnesses you quoted in your email. There is no doubt in my mind that people are suffering more and more from chronic illnesses, especially heart disease and cancer.
What did you think of item 4 entitled Can cannabis cure cancer? Did you click on the underlined title Can cannabis and cannabinoids cure cancer?
Needless to say, I was very interested in item 5, entitled PLEASE take this as soon as yur doctor mentions biopsy or surgery, and the underlined title within Reducing the risk of cancer spread. This is all about the drug Tagamet (cimetidine), a common heartburn remedy which Chris thinks ought to play and important part in the majority of integrative cancer treatment programmes. He thinks it should be taken by everybody about to undergo surgery or even biopsy, and should be used to prevent matastases. Did you read that in great detail?
I have never taken Tagamet and if faced with a situation in which I might need to take it, I would have to do a lot more research. I cannot really imagine myself taking it now to prevent metastases in the future. Facing surgery for cancer, I might think about it.
Where did you read about the lady asking her doctor about her prognosis? I think I must have missed it. I do try to limit the things I click on.
I do hope that all will be well when you have your six month oncologist visit in a week's time.
I have not heard much about your elections lately. Here we are being saturated with fear-mongering about what will happen if we leave the EU. I do not care what they say, I am voting to EXIT in the hope of becoming a sovereign country again. I suppose there will be a switch soon as everyone goes mad for the Queen's 90th birthday!!!
I think we are all glad that Shorfi had good results but disappointed she did not let us know.
Sending you my very best wishes.
Sylvia xxxx
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Hello Hanieh,
Thank you for your post. Remember we all respect you on this thread and consider you a good friend. I do hope no one has been upsetting you anywhere else on bc.org. It is not acceptable. I was very interested to read about your night of wishes.
Please try to relax and not to worry so much.
I shall write more tomorrow.
Much love.
Sylvia xxxx
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Hi Mary
I,too ,have lots of strange feelings and pains that can find no reason for them and which are mainly in my head and sometimes in my legs.I try to ignore them as much as possible. I'm just waiting to see how time will heal our wounds. I sometimes wish I were diagnosed a bit later but again I m thankful for being a survivor. I think we should all be thankful.
Love
Hanieh
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Hello Michael,
Thank you for sending link 12. I shall have a look at it tomorrow.
Thank you for link 11. I must admit I know very little about being AR+ (androgen receptor), although I have heard mention of androgen. I must admit I also know nothing about patients who have molecular apocrine breast cancer, a sub-type that is AR+ but ER- PR- and HER2-.
I have never heard of the drug abiraterone acetate which is quoted here as being beneficial for this sub-type of breast cancer. It is quoted here as being useful when prednisone is used with it. I do remember that being used when I was being treated. I did not have it but others did. I thought it was a steroid, as I remember it being given in pill form for patients to take for the first few days.
I shall post again tomorrow to talk about the Janette Collins Foundation and TNBC.
Sending you best wishes.
Sylvia
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Hello everyone,
I forgot to mention that tomorrow I shall have reached ten years and ten months since diagnosis. If I can do it so can you.
Best wishes to all.
Sylvia
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HI, MIchael
I read the article link 12: I was wondering how the paclitaxel was delivered, orally or directly to the tumor. The trial is trying to find out if some tumors are better treated by being controlled rather than by attempting, and failing, to destroy them. I could not see where it mentioned if this is the primary tumor or if it's a metastasis. I do know some people who have been controlling metastases for some time in this fashion. A friend who has survived with kidney cancer for 10 years with constant medication, and a woman with TNBC that has progressed to her lungs. She has been living with it for 3 or 4 years with oral cancer drugs. They are both regularly monitored for the size and/or progression of the tumors. Perhaps it is being considered for the primary treatment since the full-strength chemotherapy drugs are so damaging to some of us? Personally, I liked the idea of getting rid of the whole tumor, but from what I have learned since then, the present methods don't always have the desired effect.
As far as "awareness of TNBC", I think that the breast cancers are different in some ways. TNBC is more aggressive, and self-examination is more important I think. In my case, I was examined by a gynecologist in December 2013, and had no sign of anything abnormal. In January 2014, I found a 2 cm. lump that had already progressed to 2 lymph nodes. And I had a normal mammogram in Sept. 2013. Most of the people I know with the E+ tumors found them on a mammogram and they were quite small. That is anecdotal, I know. And then there is the Inflammatory type of BC. This does not always present with a lump but usually with swelling, redness, and/or pain. So there are differences. . But in the big picture, I think you are right, best to just be aware and know that a yearly mammogram may not be enough, self-exams and a good eye on things are important too.
Hope you are well,
Mary
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Hello ladies. Unfortunately I've joined the BC club for the third time. I live in the Netherlands and can't complain about the doctors here. My question is: is there a well known BC center in Europe? I mean like the MD Anderson in Texas. I don't think a second opinion would be different than what I've already heard and read but I'd like to know if there's such a specialized center in Europe.
Thank you.
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Hi MoreShoes
Sorry to hear that you are unwell.
In the UK the Royal Marsden Hospital is considered world leading but I am sure that there are other centres in Europe. From my own familiarity with lymphoma, Spain seems to have lots of research centres. However I think in the age of the connected world almost everywhere is as good as anywhere else. To me the major road blocks are getting health systems to pay for novel treatments.
Hope all goes well.
Michael
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