Calling all triple negative breast cancer patients in the UK
Comments
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Hello Michael,
Thank you for sending Link18. I shall look at it later.
Best wishes,
Sylvia.
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Hello Michael,
Thank you for link 18. I shall read it later.
Best wishes, Sylvia.
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Hello Michael,
I was interested to read you post and about the woman going through breast cancer treatment. It is a pity that she could not finish the docetaxel. As it is supposed to be so effective. I do hope she will join our group.
Best wishes,
Sylvia.
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Hello Mary,
I am continuing this post Thursday morning. I meant to say that I also remember reading the Scarlet Letter by Nathaniel Hawthorne many years ago. I must admit I do not read much fiction these days. I tend to read non-fiction a lot.
I do wonder what is going to happen in the US with the Presidential election. I heard Hillary Clinton speaking yesterday and she seemed quite unhinged. I think she is on an ego trip to be the first woman president of the US and I do not think she will be good for your country. I see her as part of the Establishment. I am sure she will provoke more wars. As for Donald Trump, I think he talks a lot of sense. I think we have to start doing good for own countries and firmly believe that charity begins at home. I do like Bernie Sanders and think he has done well. In both our countries I think that ordinary people are sick and tired of politicians.
Last night I watched a programme on television during which David Cameron faced questions from an audience for half an hour and then the UKIP leader Nigel Farrage did the same. I thought David Cameron was less than useless. He does not have the calibre to be Prime Minister and I hope he gets the push. He got elected on just 28% of the electorate and that is not a democratic mandate! It probably represents those who are doing alright Jack!
There is a lot of news about cancer this week. I think it is because there is a big medical conference in Chicago. Everything seems to be about more drugs and very little emphasis on prevention and why so many people are getting cancer.
I still believe that triple positive breast cancer is the worst diagnosis to have. Even though women now have access to the monoclonal antibody Herceptin, the cancer seems to come back pretty quickly and the drug only works for a time. It is also lethal to the heart.
This week on the news here it was all about hormonal receptor breast cancer and how they want women with this kind of breast cancer to stay on medication for fifteen years to stop it coming back. We have gone from women being put on tamoxifen for five years after treatment, to a mixture of tamoxifen and aromatase inhibitors for five years. They are now saying it should be ten years and even fifteen years. With all the nasty side effects with these drugs, including blood clots, osteoporosis and weight gain, I do not think they should be dishing them out like sweets. I am still glad that I had triple negative receptors.
I think the experts should be concerning themselves with cause and prevention. I still think cancer is a lifestyle disease.
That is about all for today. I do wonder what today will bring.
Thinking of you.
Fond thoughts.
Sylvia xxxx
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To all,
a short video from the Cancer Conference, sounds like there is a reason we were given this drug
http://www.medpagetoday.com/MeetingCoverage/ASCO/58366?xid=nl_mpt_DHE_2016-06-08&eun=g432260d0r
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HI, Sylvia,
If Michael is right and the young are for "Remain" this doesn't bode well for "Leave", however it is polling close.
https://www.yahoo.com/news/furore-over-brexit-vote-registration-crash-084829208.html?ref=gs
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Michael,
I could not pull up your post, #18. Some conflict with my computer set-up, it happens sometimes.
Thanks for posting, I will watch for the next one.
Mary
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Hi Sylvia, Mary, moreshoes and all
Thanks for all your kindness. I've been pretty busy these days as I had to attend a colleague class who is suffering from M.S.
I had songraphy of my neck which showed a thyroid nodule. Tomorrow I m going to the doctor. I probably should have a biopsy.
Scared.
Love
Hanieh
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Hi Mary
Perhaps you have cookies disabled and that is preventing the link from opening. If you are using Google or Internet Explorer, try using an alternative browser.
Michael
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Hi, Michael
You were right, it was the ad blocker on my PC that wouldn't allow the article to open. So I went to my tablet and got it right away.
Very interesting about all the advances in cancer drugs being studied, and the approval of the the drug Lynparza (oloparib). This drug may have an effect on many kinds of cancer, especially in combination with other drugs. The article only seemed to mention its' effects on advanced cancer, I suppose it is early days in research. It didn't seem to mention what the improved prognoses were, only that it seemed to work well alone and especially in addition to already used cancer drugs. Unfortunately it comes with its' own set of side effects, neurological, psychological, and also can cause anemia, fatigue etc.
Thanks, Mary
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Hello Mary,
Thank you for posting the video. It was interesting. It looks as though it was good that we had the three combination chemotherapy, epirubicin, or doxorubicin, cyclophosphamide, paclitaxel or docetaxel. We may as well face up to reality and accept that all these drugs are lethal and cause damage.
As for the referendum, here in the UK, it has been an unmitigated disaster and fearmongering on a huge scale. It has not been the Peoples' Referendum at all. The politicians have been out in force spreading fear and disaster as 'facts'. There are people with voting cards that should not have them and millions of people who should have them and have not and people who have been too lazy to get out and register. It is quite out of order to have extended the deadline to register for two more days. They have had months to register. I am quite sure that if the Leave people win, the Establishment will not allow it to pass. Parliament is already saying they will not accept a Leave vote. Is this what we are supposed to call democracy? It is all a disgrace.
Fond thoughts.
Sylvia xxxx
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Hello Hanieh,
Thank you for taking the time to post, especially when you are so busy.
I hope everything gets sorted out with that thyroid nodule on your neck. Let us know how you get on when you see the doctor today.
Take care.
Best wishes.
Sylvia xxxx
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Hello Michael,
I have just read link 18 and all the information about the new drug olaparib. I do not really know what to think. I honestly think there is just too much emphasis on coming up with lethal drugs, just as lethal if not more than the ones we already have. All this seems to be much in the news lately and really it is all about big money for the drug companies.
You can be sure that in this country the drugs will be too expensive for NICE to approve them.
On Tuesday in the i paper under Health, there was an article by Jane Kirby entitled Breast cancer patients may be denied drug. This is all about the drug, brand name Ibrance (palbociclib) for women with advanced breast cancer. The main point from the Cancer Conference in Chicago is that research presented there showed that women taking this drug with another common drug lived almost twice as long without their cancer getting worse as those given standard treatment.
This drug has not yet been approved in Europe and charities fear NICE will turn it down for use on the NHS. The chief executive of Breast Cancer Now said Ibrance was part of a new class of drugs and a 'significant step forward' for treating women. She said that in the past seven years drugs are not getting through the process.
This drug is for women who are ER+, HER2- that has spread around the body. This receptor status affects about 25,000 women in the UK. At present these women are treated with 20p a day aromatase inhibitors (ALS). Ibrance costs about £6,900 a month. Because of the cheap ALS, Ibrance will not be approved.
The drug was approved in the US in February 2015, at a cost of $10,000 a month. Around 27,000 women in the US have so far received the drug after regulators gave it fast-track status because of the compelling results of clinical trials.
Women enjoyed 24.8 months without their cancer progressing, on Ibrance, compared to 14.4 months for women on the usual treatment.
These drugs are all going to be too expensive for NHS patients. There is a big ethical question about prescribing drugs to those who can pay and denying them to those who cannot.
In the US with insurance based medical system 15 – 20% of GDP goes on health care, while in Europe it is of the order of 9% of GDP, funded by taxpayers, so what do we do? It means that only those who can afford to pay premiums can afford these treatments. What happens to those who cannot afford the premiums?
I do not think that these drugs should cost so much and I do not believe in medicine for profit.
I firmly believe the emphasis should be on prevention and not on producing more and more lethal drugs that prolong life without quality and kill you in the end.
Did anyone see the next part of Cancer and me on BBC1 Wednesday night? Any comments.
Best wishes.
Sylvia
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Hi, Hanieh,
I hate to think of you being scared, have you found out any news about the nodule?
I read a headline just this morning about "being very close to a cure for MS", that would be very good news for your friend and colleague. They are doing trials using a combo of chemotherapy and stem cell transplants and have apparently had some very good results. This is being done in Canada.
Please let us know what you learn.
Love, Mary
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Hello Hanieh,
Please let us know what happened when you went to the doctors today.
Thinking of you.
Love
Sylvia xxxx
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Hi I've come across some information that you may find helpful. I've done a topic box in the science forum. Posting this on a few threads
https://community.breastcancer.org/forum/73/topics/845083?page=1#post_4733978
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Hi Sylvia and Mary
I'm really sorry for my delay in response. I went to the doctor on Thursday and he ordered a biopsy which I did on the same day. It was far more painful than my breast biopsy as my nodule was very sore. He took four samples from my thyroid and the nodule and then a blood test. During the biopsy, he believed it was just a subacute thyroiditis and had no malignancy. Thankfully , as he said it was benign yet tomorrow I should see my doctor again for the final diagnosis.
Thank you so much for your concerns.
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Hello Hanieh,
I have read your report and was glad to know there is no malignancy. Please try to stop worrying. You need to move forward with your life.
Fond thoughts.
Sylvia xxxx
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Hello Mary and Michael,
I have just found this latest link on our thread. Have you read it and what do you think? If you have not read it please try to and let me know what you think. It seems to be promoting beta blockers for treatment of breast cancer and others at the time of surgery. Have you heard anything about this? As you know, I am very sceptical about taking these well known drugs prescribed for other illnesses for cancer. We have metformin being pushed and I have also read about pills for other chronic conditions being promoted for dementia. I value your opinion. Personally I would not touch any of them. I have read that anti-depressants may cause dementia. All these cocktails of drugs seem a bit Frankenstein to me.
I hope to hear from you.
Fond thoughts.
Sylvia
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Hanieh,
I am so glad to see "negative for malignancy" in your report. I think the doctor visit will affirm that finding.
Then you are free to go back to your busy life, I hope the thyroid site is no longer painful to you. As Sylvia said, I hope too you can move ahead and enjoy your life and enjoy being the beautiful, accomplished young woman you are.
I understand completely the worry you deal with on a daily basis, I am the same. I guess it is our new normal. We have to find a mental box to put that in and not let it take over our lives, but I know that when I am having a lot of pain in my back and am feeling very tired it's hard to keep that worry in its' place.
You are very close to being 2 years post-diagnosis, I am a little ahead of you, about 2 1/2 years. My oncologist told me that is a very good place to be.
My local weather report does not help! It is very hot here, so hot and humid I can't be active outside after about 11:00 AM, since I am quite sensitive to being overheated. Today I will find things to do with a girlfriend and probably will be running in and out of Air Conditioning!
Be well, and we will talk soon,
Mary
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Hi Sylvia and Mary
Although I have been really busy, this pain in my thyroid kept all memories of this illness fresh. But as you said, we should move on, despite all the scary and strange pains that we feel in our lives. Our new normal is the combination of the deep pleasures of having the chance to live again and a feeling of rebirth because of all the strenghts this illness endowed of with and also the fears of what ifs.
Mary, Sylvia, I'm really grateful to have such great friends as you.
Love you and wish you the best
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Hi, Sylvia
In reference to the articles on the beta-blockers improving recovery and lessening cancer recurrence. I did hear about this some time ago, but pretty much forgot about it because it seemed to be more for people first going through chemo and surgery. It now seems it is being talked about as something to take daily to lessen cancer recurrence. It seems to work by lessening the stress reaction in your body, and I am a believer in that stress can help cause cancer. I don't think I am ready to jump in and start taking them however. My husband had to take them, and there are many side effects, as with all drugs.
I read over the first article quickly, I will look at it again later.
Hope you are well! Here it is very hot, to the extent that I can't do much of anything outside after early morning hours. I had heat stroke years ago and it really affected my ability to withstand the heat. Ready for a trip to the mountains!
Talk soon, Mary
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Hi Sylvia/ everyoneI've not been on the site for a while. Had quite a stressful time at work as the company I work for has been taken over. I still have a job but there is a lot more learning / courses to attend.
I finally got my mammogram result back which was ok. Also at my review I mention my breathing was a bit laboured , the onc sent me for a ct scan. I was very anxious as I had not had one before and I was worried that something might show up. It came back ok so I was so happy about that.
How is everyone else feeling , do you still get aches and pains? I think the difficult thing to know is if the pains are a normal symptom of the treatment or something more sinister.
I hope everyone is well and we get some sunshine back soon .
Amanda
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Hi Sylvia, Mary, Amanda and all
Yesterday, I went for the final diagnosis and the doctor said it was subacute thyroiditis which was caused by a virus. He believed these viruses are going to kill the next generations. He prescribed steroid pills to take for 3 months to treat the nodule and the inflamationof the thyroid , then have another songraphy and blood test to check everything. He will be in the US for the next three months. He has clinics both in Iran and the US. I'm a bit worried about taking the pills.
Now I m in the class and my students are taking their final exam. This term will be finished in two days and then we are off for 10 days. Yesterday my husband and I reserved a tour for a one-week trip to Georgia-Tbilisi and Batumi. This is our first trip there and I hope to have a great trip. One of my friends is a tour guide there and says it's worth visiting. After all nothing is more enjoyable for me than seeing new places. We will leave on Sunday 30th .I will post some pictures there.
Mary, I'm sorry to hear you have had heat stroke years ago and can not stand it anymore. I hope you manage to take a trip to the mountainous areas.
Amanda, congratulations on your great news. I wish you a whole-life NED.
Lots of love love
Hanieh
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Hello Hanieh,
Thank you for your post. At least you have a diagnosis. I have looked at my British Medical Association book and it does indeed say that thyroiditis is an inflammation of the thyroid gland that can occur in several different forms. The most common form is Hashimoto's thyroiditis, an autoimmune disease that causes hypothyroidism (an under active thyroid gland). The book says that less commonly it is associated with a viral infection. You can see it is important to get the right diagnosis.
I have a friend, a retired senior nurse, who has Hashimoto's thyroiditis, an underactive thyroid gland and she is treated with thyroid hormone tablets.
You said in your post that your doctor believes these viruses are going to kill the next generations. Is he talking about people here?
If that were me I would be concerned about taking steroids for three months. Steroids do make you put on weight and have other side effects. I have a female cousin who was put on these to treat asthma and COPD (chronic obstructive pulmonary disease). She packed on weight, had a fat pad form on her back and developed osteoporosis. She was also hyperactive. She got herself off them and is fine now. I am posting a diagram for you to look at. My cousin was told that long term use could cause diabetes because steroids affects the blood glucose level.
Of course they are used to reduce inflammation. Are you taking high doses for three months?
I am assuming that you have had the usual blood tests for your thyroid levels. Here in the UK they are part of routine blood tests. They test for T3 and T4. If these levels are not kept within narrow limits you may have or get hyperthyroidism (an overactive thyroid) or hypothyroidism (an underactive thyroid). Have you had these tests?
I hope this helps as it is always best to be informed.
Do you eat plenty of iodine-rich foods? I know that here in the West there is a lot of iodine deficiency. Seafood is the best source of iodine. I regularly eat prawns from cold water oceans, such as the North Atlantic. There are lots of prawns that are farmed today but I do not think they are rich in iodine. I also sprinkle kelp powder on my food and sprinkle dried seaweed on my fish. Without this it is not easy to get iodine in your diet. You can also iodine in iodised salt but it is not easy to buy or obtain.
You must be looking forward to your end of term and to ten days off. I do hope you and your husband have a great trip. I know that you like travelling, seeing new places and having new experiences. We shall all look forward to great photographs from you.
Thinking of you.
Love,
Sylvia xxxx
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Hello Mary,
Thank you for your posts.
Like you, I do think that stress is a factor in the development of cancer and that we should do all we can to avoid negative stress. However, I am so against swallowing all these pills that the experts keep throwing at us. They seem to have a group of pills that they want to build up as cure-alls for everything you can think of. They do not seem to be interested in prevention and I do wonder about patients as well, who seem to think swallowing a pill is easier that altering their lifestyle.
In the papers yesterday there was a battle going on about statins. One camp saying that statins were useless for the 60 plus and that cholesterol was very important to them. This is not the first time I have heard this and I tend to believe it. I do not believe that statins are good to anyone and it does not make sense to use them to stop the natural process of cholesterol in the liver. I think the experts should be concentrating on prevention and establishing why people are getting ill at a younger and younger age, especially with breast cancer.
I can understand how you are affected by the heat. I much prefer cooler temperatures. I cannot stand high humidity.
I was wondering whether you know the writer of fiction, Lionel Shriver. I am trying to obtain one of her novels, written in 2011, it is entitled So much for that, and is apparently about a man who has retired and wants to go off travelling when his wife says something like I may need your health insurance. It is then a story of her going through cancer and about a health system based on insurance etc. Have you read it by any chance?
Take care.
Love,
Sylvia xxxx
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Hello Amanda,
It was nice to hear from you. I was sorry to read that you are having a stressful time at work. I was sorry to hear that your company had been taken over. Just give yourself time to adjust and try to take all the new learning and courses in your stride. Tell yourself you can do it but do not get stressed.
As you can see from the thread, we all keep going, but have our ups and downs. Remember we are all strong women who have survived the life changing experience of breast cancer, but we have come through it and are here to help and motivate others.
I was so glad to know your mammogram was clear and that your scan also came back clear. Your breathing problem may be due to stress. I have learned to listen to my body and I know that if I feel stressed about anything in the course of a day, that my breathing changes in a very noticeable way. Slow deep breathing sometimes helps.
I think we have all learned to read our body.
Keep well and keep smiling.
Love,
Sylvia xxxx
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HI, Amanda
Nice to see you back here. Glad your tests came back good and normal. I understand about the labored breathing. A few months ago I had heart tests because I wondered about my heart, the hospital also did a chest x-ray. They said everything was normal, which was great but didn't answer my questions. Which seems to be the spot you are in with your breathing. I am having an issue with weakness in my legs, which is really bad if I let myself get really tired. The day I became worried about my heart I was also short of breath, and had to sit down for a while to recover. After all tests came back normal, the docs really had no answer for me except to say perhaps chronic fatigue. The shortness of breath I myself put down to an anxiety attack. Anxiety attacks mimic the symptoms of a heart attack, and just add to the confusion.
I am left with the conclusion that I am physically just not the person I was before. I cannot walk as long and as far as I could before, I tire much easier no matter how active I try to be. I began to go to yoga, but became too busy with the warm weather's arrival, I am going to resume that when I can. I am doing acupuncture and massage regularly and trying to eat as well and cleanly as possible. I have been to my Family Doc, the Oncologist, an Orthopedic doc about my many aches and pains, (yes, still have them and my lower spine and neck are an arthritic mess); a Neurologist to see if the weakness problem is caused by the neuropathy I have after the chemo, (no clear conclusion); I have had MRIs, a CT scan and an x-ray. I am tired of trying to fix things that don't seem to have a fix, I have decided to just live as well as I can.
I wish I had answers for you too, and I hope your situation at work becomes comfortable and easier for you. You are learning new things though, that is good for your brain!
Talk to you soon, Amanda!
Mary
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Hi everyone
Thank you for your kind responses.
Mary I think you are spot on when you said about the shortness of breath and anxiety. I have noticed that when the tightness comes my heart does seem like it's racing. I have started back running a bit I find that it helps my state of mind and funnily enough my aches and pains. You mentioned that you did yoga , I am thinking that I might also give that a try if I can find a class near by . We just have to keep plodding on don't we. Xx
Hanieh I wish you and your family a lovely holiday and hope you will feel better soon.
Sylvia I'm so grateful to you for starting and keeping this thread going. It is so helpful to talk to others who know what you are going through and have the same fears .
Amanda xx
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Hello Amanda,
Thank you for your kind words about the thread. I do my very best and comments like yours make it all worthwhile. I am very proud of the women that have gone through this thread and of the quality of all of the posts. Breast cancer is a disease that marks all of us that go through it and it is very difficult to pick up the pieces and get on with our lives. If you know anyone going through this journey please tell them to come and join us. Apart from the cancer support and new information that we get through the thread, it is also a great education of people's lives around the world. It is a form of friendship.
I am very concerned about all the young women that are being diagnosed and often try to work out why this is happening. There could be many reasons.
I wonder if it has anything to do with young girls starting their periods at such a young age, sometimes as young as 10 and thus being exposed to hormones earlier. I have read that Victorian women did not start their periods until about 18. There is also the birth control pill which some girls are starting at a very early age and so may have been on them for a very long time while still relatively young. Then, of course, there is lifestyle. There is so much more junk food and processed food. I was brought up on a very simple and basic diet and the food was not as contaminated or full of hormones as it is today. There are growth hormones in meet and dairy products and fish is being farmed and all this produce is full of antibiotics. I had no illnesses throughout my adult life until I was diagnosed with breast cancer at nearly 63. It was quite a shock and I think the main factor was stress.
I am now just five days away from 11 years since diagnosis, but I still remember 2005 and 2006 so vividly. I have quite a few women in my immediate neighbourhood who are all well and getting on with their lives after breast cancer, but most of them had hormonal breast cancer but with HER2-. There is one lady whom I worked out must have had triple negative and she must be about a 25 year survivor. The only one I know who did not survive had triple positive which went metastatic and she did not survive long. I still think triple positive it the most aggressive.
Are you following the Referendum? It has been a dreadful campaign and the politicians have hijacked it. It is supposed to be the people's referendum but they have not been left to make up their own minds. George Osborne was on Radio 4 this morning making the most awful threats about leaving the EU. I do believe we should be a sovereign and independent country. I think, if we stay, young people especially are in for a shock. I have read that the EU wants a European Army, of conscription, and that is pretty frightening.
Keep well and keep in touch.
Love.
Sylvia xxxx
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