Calling all triple negative breast cancer patients in the UK
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Hi Kath,
Glad to know you're almost done with your chemo. Is it really necessary to undergo radiation therapy after chemo? I wonder if i will also do rads after my chemo. How do they determine if one needs the rads therapy? I'm done with FEC, not too bad, but still i have 3 docetaxel sessions to go. Good luck on your last session, praying that you will finish everything with flying colors and thanks for the tip on that new combination drugs that fights metastatic bc. It is interesting. I just wish they can develop a new drug in time to save all of us!
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Hi Silvia,
Thank you for that beautiful New Year greetings. Such lively colors and as always, with a simple but meaningful message.
I read about your post to Kath about that new combo drugs for metastatic bc. I saw her post but did not pay much attention because most of the time, news about cancer drug discoveries do not live up to expectations and it is very frustrating. However, somehow news like this give many cancer patients a new hope which generates a "positive attitude" in general. I wonder what that mcl-1 blocker is that goes with dasatinib. I've research a little bit and found the S63845, which is an mcl-1 inhibitor. Could it be this? It is certainly a good news especially for metastatic breast cancer patients and i just hope they can develop this at an affordable cost.
Here's wishing all of you a Happy New Year filled with everything we all wish for!
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Hello All
Checking in. Sending fond thoughts to all, and strength to those going through treatment. So happy Kath you can see and end to chemo. May the new year be a great one for all of us. Most of all, may we continue supporting each other. This site has been my lifeline. I so appreciate you all.
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Hello Gina,
Thank you for your lovely card and for your input about the information that Kath found for us.
I was wondering the same thing about MCL-1 protein and what they used to block it. There was another line in the research paper that I did not quite understand and which I want to research more. This is what it says: "The researchers went on to explore how MCL-1 drives the spread of cancer through the body. They showed that, in cancer cells, MCL-1 regulates proteins called 'Src-family kinases' - which are extremely important for cancer progression and spread in may types of cancer. I need to look this up.
Another line had this: "Dr Oakes says, 'These findings have implications that could reach far beyond triple negative breast cancer and in fact beyond all breast cancers. This is because we know MCL-1 is a crucial survivor factor in a wide range of cancers, and Src-family kinases are hugely important for cancer spread in a great many cancers.
'For this reason, we believe that this type of dual therapeutic approach, we have tested successfully in pre-clinical models, could hold great promise for the many cancers that rely on MCL-1 and Src-family kinases to survive and spread'".
Apparently these findings have just been published in the journal Breast Cancer Research.
All this information is up to date. It says media release December 19th 2016.
On a lighter note, what are you doing for New Year's Eve and New Year's Day? In France they have the Réveillon on New Year's Eve and in England people stay up to see the New Year in. In Scotland they have Hogmanay.
Wishing you a healthy, happy New Year. How are you feeling at the moment?
Fond thoughts.
Sylvia xxxx
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Hello Val,
I am so glad to know that we have all been of help to you.
I do hope you continue to do well and am sending my very best wishes to you and yours for a healthy, happy New Year in 2017.
Fond thoughts.
Sylvia xxxx
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thanks Slyvia
U are a voice of reason as always. Feel relatively well but still a little scared about this ahouldervand whether they have missed something. I still have great range of movement and no trouble carry or lift things but it just feels weaker. Hopefully it's just the chemo but I'll get this and my radio finished and see what the dr says. Logical me says it's an old injury aggravated by chemo and I do suffer from osteo arthritis. One day at a time! I hope you have an amazing new year
Cheers
Kat
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Hi Sylvia, Mary and all my dear friends here
Sorry if Im a bit late posting here to congratulate you all on Christmas and the new year. I wish all here a year full of health, wealth and happiness and many more such years to come.
Here, we celebrate the new year with the comming of the spring.
Sylvia, thank God everything is going well and I am again busy with work and duties. But one thing is bothering me and that is about a friend whose diagnosis was two years earlier than me and now she is having a diagnostic lumpectomy of a suspicious mass. Every minute I'm praying deep in my heart that it's just a benign mass as she has not reached her 30 yet. She was always a great source of inspiration to me. We got to know each other on the Internet. Please send all your positive energies to her.
The weather is cold here and whenever it's not wet, it gets extremely polluted.
Wish you all the best
Hanieh
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Hello,Sylvia,
I have pretty much caught up on the thread, it has come back to life suddenly. I found myself quite caught up in the Christmas rush, more get-togethers with family and friends, then helping grandkids with exchanges on gifts that didn't fit, then utilitarian tasks like paying taxes and getting vehicle serviced. I had unexpected company last night, today my sis-in-law and I will go to the city for New Year's Eve. We will have dinner and attend a party, but I doubt I will be awake at midnight!
Looks like there is a lot of news on the science front, I feel somewhat like Gina does. We read about all these drugs, and it seems like it is an interminable time until they actually are in use. However, I was diagnosed in February 2014, and just since then there are so many new drugs and genes and protein-blockers found that it is quite amazing. When I was diagnosed I heard about the chemo and the rads, that's it. Immunotherapy was not mentioned, nor were all the gene tests done, only the BRACA as far as I know. The dasatinib mentioned in the article Kath posted sounds very promising; however, I can only hope that the side effects are not as many or severe as in our standard chemo. The "switching off of proteins, such as the MCL-1" sounds great, as long as that protein is not doing some other job in the body that is very important. And I note that it is best when used with the drug dasatinib.
I noted the article you posted on Kadcydla. I definitely think it should be available if it can truly offer 9 months of life to an ill patient, however, I wonder what quality of life it insures. But it would be nice if the choice were up to the patient or a trusted doctor. I think these drugs usually do become available, there is always a fight, but in the end the drug companies, I believe, really do want their drugs in use; and the NHS probably really doesn't like being harangued by angry patients, or rather, their representatives. This is probably the thing I don't like about big government-run health systems, there are no faces and no names, one is dealing with a bureaucracy, and it's hard for the individual to get anywhere alone. People are very much numbers and statistics in a computer, and our health is so important, it's the area where we most want our voices heard. At any rate, I do hope the Kadcydla will become an option for ill cancer patients in UK, and I hope the dasatinib and the protein-blocker are not toxic and soon follow!
I was remembering my childhood this morning, and I remember hearing of one woman in our community who had breast cancer. She is still alive today, and very well. Many years later, my aunt had breast cancer, she had a breast removed, no chemo, and lived many years. Now it is hard to keep track of all the cancer patients living in our county, something has definitely changed. I still think the answer is there somewhere; what is different between then and now?
I noted in your post to me about your neighbor dying at 72 of a heart attack, even though he was very active. My feeling these days is that we don't have a whole lot of control over the whole process, we can only do the best we can and live each day. Now that I am in my sixties, I am amazed at all the people dying around me who were younger than I, I was feeling like 60 isn't old; but I think it will be an accomplishment to make it through these years! Or, since I do feel at the whim of the fates, it will be a stroke of luck! Or, at God's will.
I was looking again at your post about the bacteria in your mouth, congratulations on getting the names of the bacteria, truly a mouthful! I'm glad your oral problems are manageable, it is very good to be able to keep one's teeth. I had one pulled last year because I didn't want a root canal, and I hope I don't lose any more.
I had better get on with my day, we are having another cold, gray day here. Nothing like Kath's weather!
Talk to you soon,
Love, Mary
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Hi, Gina,
Glad you didn't find the FEC too daunting, best wishes through the Taxotere. I noted your comment or question to Kath about the radiation after chemo, and if it was necessary. I did not have rads after chemo, but it was rather up-in-the-air My MO said I didn't need it, but then he retired on my last day of chemo. Everyone else I knew that was treating were having rads, so I questioned the radiation oncologist at the center where I went. He and other docs there studied my case for several days, and then came back and said they thought it would be of benefit to me to have rads I was having a lot of arm pain, and nerve pain at the time, so I was not thrilled at the thought, but thought I would do it if necessary. I told the RO about my other problems, and he decided that the benefits didn't outweigh the risks of further misery. So, was that the right decision? Who knows, it's a done deal. Sometimes now I wish I had done the rads, BUT I am not in as much pain now as I was then.
Gina, I hope you have a great New Year, and keep spreading joy and good will wherever you go!
Talk to you soon, Mary
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HI, Val,
I wish you peace and continued good progress in the New Year ahead!! This site has been so very important to me too, and the source of so much support! I truly feel we are all family.
Talk again soon,
Mary
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Hi, Kath,
Hard for me to believe your Christmas was spent in the pool, at 40C, which for us is 104F! Although we were warm and windy here, which just doesn't seem right for Christmas.
You are getting so near the end of your chemo, that is wonderful. Are you sure you haven't injured your shoulder? I tore my rotator cuff during chemo, and it caused me a lot of pain that radiated over my entire back. It has quieted down now, but still hurts with much activity. I have avoided the surgery because of the long recovery time. But I think you are right, once you are done with chemo, you can figure out what's going on with your arm.
Talk to you soon, happy New Year!
Mary
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Hello Hanieh,
I will say Happy New Year anyway, even though yours is celebrated in spring! Nothing wrong with more than one wish for a happy year.
Glad you find yourself busy with your work, and so sorry to hear about your young friend. It wasn't long ago when you lost one of your lovely young friends. Hopefully this young lady will find her lump is not malignant and she will be fine. It seems we can never get away from all this worry and the cancer fears, it is just way too common these days.
Sorry your air is polluted, that is miserable. Do you use an air purifier indoors? I use one to hopefully clear the air of dust and particles etc. My step-daughter gave me a Himalayan pink salt lamp for Christmas, it is also supposed to clean the air and put out negative ions, which cause all kinds of good things to happen to us. I figure it's worth a try!
I hope your weather gets nicer, and you can enjoy the outdoors. Here it is cold and gray, a typical winter day.
Talk to you soon, dear Hanieh!
Mary
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Hello all,
https://thetruthaboutcancer.com/news-stories-2016/
This was Ty Bollinger's New Year's post, some funny stuff.
Mary
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hi Mary
It is an old rotator cuff tear that has never healed. I had a steroid injection in it last year so I think the chemo is aggravating all the muscles on that side. Still have great range of movement just feels weaker
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Hi, Kath,
Sorry, you had mentioned before about your rotator cuff, I had forgotten. I will bet it is weaker, because you are probably using it less than your other arm. I have range of motion in most directions, but there are a couple of directions I don't move it, and the pain flares up very easily. And I agree the chemo makes it worse, I think it sets off the nerves in the area, and just makes it especially sensitive. I was told at first mine would heal, but it did not, it got worse. Kayaking in Aruba did not help! I have been thinking about the surgery again, from what I hear, it's a long, and painful recovery.
You can think about all that later when you finish your Taxol, won't be long now!
Have a great weekend!
Mary
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hi Sylvia/everyone
Just wanted to wish all the TNBC ladies on here a very happy and healthy new year, most of you dont know me but i still follow your posts Sylvia, ill catch up in the new year and let you know what ive been up to,
To the newly diagnosed, Sylvia was a wealth of information and support to me and now i am three and a half years out from dx and still doing well....
Live your life, have fun, do new things and be happy
Lots of love
Gil
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Hello Jackpot(Gil),
I was so thrilled to see that you had posted this evening and so glad to know that you are doing well. It is hard to believe that you are now three and a half years since diagnosis. I have not forgotten you and have often wondered how you were getting on. I do also remember how we both liked John Bishop and that programme The Moaning of Life.
Thank you for your very kind words and I am so glad that I was able to help and support you in some way.
I do look forward to hearing from you in the New Year and to know how things have been going for you.
I do wish you the happiest and healthiest of New Years.
Fond thoughts.
Sylvia xxxx
PS A while ago Mary Margaret Hope popped in on one of the anniversaries of her cancer diagnosis to let us know she was doing well. You may remember her.
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Hello Mary,
Thank you for your interesting post and once again thank you for your great effort on the thread.
I shall be thinking of you as you celebrate New Year's Eve in the city with your sister-in-law.
I agree with you that there is a lot of news on the science front but it seems to take forever for any of it to come to fruition. With chemotherapy it is basically the same drugs that are being used with a few additions such as the platins.
I have read quite a few times now the link that Kath sent in and find that bits of it are quite difficult to understand. I have been trying to get my understanding clear of the protein MCL-1 and especially what Src-family kinases means. I found a different article from Breast Cancer Research, most of which is very technical.
http://link.springer.com/article/10.1186/s13058-01...
This is what I found:
"Metastatic disease is largely resistant to therapy and accounts for almost all cancer deaths. Myeloid cell leukaemia-1 (MCL-1) is an important regulator of cell survival and chemo-resistance in a wide range of malignancies, and thus its inhibition may prove to be therapeutically useful".
With this bit I found out what MCL-1 stands for.
In this paper it looks as thought they were examining whether MCL-1 may provide an effective treatment for breast cancer and they constructed inducible models of BIMs2A expression (a specific MCL-1 inhibitor).
I found a lot of the information under Results on this paper quite complicated.
Under Conclusion, it said "These data provide the first evidence that MCL-1 drives breast cancer cell invasion and suggests that MCL-1 antagonist could be used alone or in combination with drugs targeting Scr kinases such as dasatinib to suppress metastases."
Reading Kath's link I think that MCL-1 is something that is found on the cancer cells and which they now think causes metastases, so they have found a way of switching it off.
That is how I have understood it but I am no expert. Are you there, Tom?
As you say, all this research and trials takes a long time. If it does come to fruition, we do not know the cost, we do not know the side effects and whether it gives us quality of life. It would probably be used only on the newly diagnosed and at risk.
I do not know what will happen about NICE's decision not to approve Kadcyla. Everything is such a muddle in this country, especially between England and Scotland.
The charity Breast Cancer Now has launched a petition against this decision and Breast Cancer Care has said that the decision is unacceptable. This drug is only for patients with HER2+ and presumably where Herceptin has failed. In England we did have the cancer drug fund and Kadcyla was available through this, but it has overspent and is now in the hands of NICE. I am pretty sure my friend and neighbour, who was triple positive and then became metastatic had Kadcyla, but she died just over two years ago now.
In all of this I still believe that the greatest effort should be prevention. More and more people are getting cancer and I still think it is largely lifestyle and the industrialised world we are living in.
Wishing you a really great 2017. Do you make any New Year's resolutions?
Fond thoughts.
Sylvia xxxx
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Hello everyone,
Wishing you all a very happy, healthy New Year and hoping to hear from those that have not posted for a while, to let us know all is well, and what you have been doing, especially this evening.
Have you made any plans, resolutions or pledges for 2017?
Fond thoughts to all of you.
Sylvia xxxx
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Hello Sam52,
I was just wondering how things are going with you these days. Are you still in London or have you now settled into your new home? I do hope you are well. Please feel free to post on the thread to let me know how you are.
Wishing you all the best for 2017.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia, Mary and all,
Happy New Year. We celebrated our New Year's Eve about 6 hours ago with the traditional Media Noche, a midnight feast with the family at home. It was a somewhat tame celebration this year for country as there were much less firecrackers and shorter street parties. There are designated fireworks display areas where everybody can watch, more orderly and less injuries this time. The government has cracked down on illegal firecracker stores and discipline was implemented. I understand that we are ahead of UK by about 9 hours and US by about half a day so I am wishing you a safe and merry New Year's Eve revelry.
Thank you for your kindness and support throughout the past year and may our Almighty Father give all of us more wisdom, motivation and good health to continue on giving help to everyone in need here on this forum.
I think we already have a special bond brought about by this unfortunate common illness and there is a genuine desire in each of us to help others. I am grateful to be a part of this thread and share my experiences, feelings, thoughts and ideas with all of you as you share yours. I love everyone here.
As we start a new year, i am offering a short sincere prayer that all of us, including our families and friends be truly blessed with love, peace, happiness, good health and prosperity. May the spirit of goodness and kindness be always in our hearts and that peaceful brotherhood be stronger among all races of men.
Love you all,
Gina
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Greetings to everyone here,
Hoping that 2017 can be embraced regardless of what comes along and that it will have many days of contentment and peace. None of us can predict the days ahead of us, but my intention is to live each day with gratitude in my heart.
I still have house guests until next week, then I hope to be more of a participant in the thread's discussions. I am reading about twice a week, but hopefully when things are less busy here I can check more often. Fortunately I am well, and it has been over 4 years since my diagnosis. I do not think much about cancer at all these days - so like others have said - the further along we get in our treatments, the less the cancer consumes us - of course I do have my moments especially when I get an unusual ache or pain!
In Vancouver we have snow for the last day of 2016.
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Sylvia,
You said it right. The greatest effort should still be prevention. I believe that nutrition and environment are the primary factors in the prevention of cancer. I am certainly no expert but i noticed that many current cancer cure studies are focused on things like protein, enzymes, hormones, vitamins and many others which one can control by amount of food intake and the environment they live in.
I am for orthodox and complementary medicine and somehow i think that while we are waiting for the real breakthrough cancer treatments to be discovered, we should already start prevention by depriving cancer cells of their food which are basically sugar, red meat, soda, coffee and dairies. Instead we eat lots of organic veggies and fruits plus supplements for phytonutrients and anti oxidants which are cancer fighters. I am sure many will disagree with me on this but i am basing my idea on the research studies of inhibitors which focus on proteins and other nutrients normally found on food.
My thought is that if we deny ourselves of food that causes cancer, it would certainly help prevent it. For example, if certain components of protein like MCL-1 cause cancer, then avoid eating animal meat if possible If high estrogen is found in your body, then avoid foods which cause this and eat those that lower it. I will again mention of my officemate and just recently another friend, who had cancer lumps that were cured by just eating veggies, fruits and other natural stuff for almost 2 years while completely avoiding sugar, meat and dairies. I dont exactly know how they did it, they became reed thin, surviving without animal proteins and sugars (of course there's natural sugar in fruits, etc). I tried it for about eight months after dx although not faithfully and it did not work for me and i still have to undergo surgery and chemo. I dont know if it was late for me or if that 8-month period is just not enough, I lost a lot of weight and my breast lump became more prominent. I dont know if starving my cancer was a good move because it became more obvious that it gave me an earlier chance for traditional treatment or the cancer starvation idea was a total failure. I still believe it is the former.
I was underweight by about 10 pounds since continuing on a veggie/fruit/fish diet and undergoing chemo. For fear of further losing my weight and delaying chemo, i have to break my diet regimen. I tried using plant-based protein but it did not help me gain weight. I only gained about two pounds since starting to eat organic beef, chicken and eggs again (I hope they're really organic as claimed). I am forced to do it so as not to delay my chemo treatments. My goal now is to balance everything as necessary.
I wish we have an expert resorce person on things like this.
Ok, talk to you again.
Gina
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Hello adagio,
It was nice to know you are back home in Canada. I do hope you will have a very good year in 2017.
I know that you are very busy, but it will be so good to have you back taking part in the discussions on the thread.
I am glad to know that you are keeping very well four years since your diagnosis. I think it is good that you do not think much about cancer at all these days. This is how it should be. When we are newly diagnosed and going through all that long and tiring treatment, cancer does consume us. When we have finished we start to get back to normal, but still have the years of having to go for check ups. When they are over we do feel very cut off but we soon get used to it. Moving on from it all is healthy.
I think there will always be the before and after cancer in our lives, but we do get back to normal. We know that we have to take care of ourselves, because there are no guarantees. At least that is how I feel 11 ½ years on.
I do not envy you your snow but lots of people enjoy it.
Keep in touch, keep well, keep strong and optimistic.
Fond thoughts.
Sylvia xxxx
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Hello Gina,
Thank you for your post. I think that we all have to make up our own minds what we are going to do about our lifestyles to try to prevent cancer in the first place, or if we have had it, to stop it coming back, but there are no guarantees. We all know that cancer is multi-factorial and I do not believe there is a magic bullet.
I believe in the rainbow diet and the great importance of fruit and vegetables. I base my daily living on these and try to get a good mixture. I also believe that nuts, seeds and pulses are important and I eat them on a regular basis. They are a very good source of protein and are full of nutrients. I do not touch any dairy products, or meat, or alcohol. I do have soy yoghurt and almond drink, both enriched with calcium. I steer clear of sugar and junk food. I do eat some oily fish, especially wild salmon. I find that I thrive on this, but I leave others to make up their own minds. That is all we can do.
I believe that integrative treatment is the way of the future, a mixture of orthodox, complementary and alternative.
I cannot see that the future lies in more and more toxic drugs, but that is my own personal opinion.
On the thread over the six years since I started it, we have had many discussions about food and most people seem to try to take care of themselves in this respect.
Environment is quite difficult because the planet is polluted. I am careful with household products and toiletries and try to use the safest ones I can.
I believe that stress is one of the great factors in all the chronic illnesses. I believe it sends the body into turmoil and things such as hormones malfunction and a process of inflammation is started that makes the way for the major killer illnesses. We need relaxation, laughter, peace and safety and not worries and stress.
I do not believe we need 'experts' to tell us what we need to eat and what we should steer away from. There are nutritionists but they are not necessarily right about telling us what to eat, especially those at the hospital.
I do hope all will go well for your next chemotherapy treatment. Let us know how you get on.
Take care and live your life as normally as possible.
Fond thoughts.
Sylvia xxxx
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Hello Amanda,
Happy New Year! I like your cheery picture.
All the very best for the coming year.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia,Gina,Mary and everyone,
Happy New Year !I am feeling so much better that I can't believe it. I was able to take a long walk on New Years Day with a good friend and my dog-Indy. Wishing everyone health and happiness for 2017!
Rhonda
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Wishes for a very peaceful and happy new year all. Thanks for your Christmas wishes Sylvia. I thought I'd bring you up to date on current circumstances
After completing treatment and told my follow up plan was to see surgeon a year after lumpectomy I've been keeping pretty well and managing my side effects reasonably well. I was looking forward to getting fitter in the new year and I've had meetings about returning to work soon. However, I learned just before Christmas that I have the BRACA2 mutation.
I had pushed for the test because I don't have very much family history information, not really expecting to have the faulty gene! So now it's back to researching the imllications for my family and myself.
My understandings and expectations around TNBC now need to be adjusted. I would like to find out about the stats on disease free survival rates for BRACA2 after cancer.
I am waiting for appointment with my excellent breast surgeon and will be very happy to accept his advice. But I am expecting to go for prophylactic double mastectomy and probably hysterectomy.
What I'm wondering though is whether or not I will have any investigations into my current cancer status before any surgery is undertaken. Will my oncologist for example, routinely offer me an appointment to discuss the change in my circumstances and/or offer MRI, blood tests etc?
Has anyone else with TN been through this situation? Can anyone advise me on what tests(if any) I should expect(or push for)?
Our 3 children have started the ball rolling to find out if they have the faulty gene (50:50 chance). Our daughter has an appointment tomorrow with the genetic counsellor. She is 32 and doesn't have children yet so we're praying she doesn't have the faulty gene.
I/we are grateful though for finding out about the faulty gene as it offers me and our children opportunities to take action (if necessary) to reduce their individual risks.
Warmest regards to all
X
Maggie
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