Calling all triple negative breast cancer patients in the UK
Comments
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Sorry......half the message got omitted.
It is about turning ER neg tumour cells into ER positive ones - potentially very exciting.
Sam
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Hello Sylvia and everyone! Thank you for the kind words. I actually feel a bit better today, amazing what one day can do!
I met a lady years ago that told me she had "spontaneous remission". It was while I was waiting for my oncologist, she was waiting also. She had been diagnosed with stage 2 breast cancer many years before and was doing well, but then she was diagnosed with leukemia. She said she was on her deathbed, with hospice right there with her, keeping her comfortable. They were not giving her much time, maybe a few days, maybe a week. Then she started to feel better, and was able to get out of bed. She started to feel good so she went to the doctor for more tests and they could not find any abnormal leukemia cells whatsoever. When I met her she had been in remission from leukemia for a few years. I still remember this lady's face! She was like an angel to me, telling me she had survived breast cancer and leukemia. When I went in to see my doctor, he said, now there is a lady you need to talk to and I said I already had! He then repeated what she had been through. Absolutley amazing!
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Hello Sylvia, and everyone else - dear women. Thank you for thinking of me.
I am hanging in there, my SEs from the chemo have been minimal so far, I am just now seeing some hair come out and I had a bad day after treatment last week. But overall I can't complain.
I have a CT scan set for Monday, as once I weaned off the steroids my cough got terrible. I don't think the Abraxane alone is working unfortunately, so I will have the scan to see if there is progression. If so, I will be switched to the Abraxane/experimental drug arm, but I won't let it go longer than another 4 weeks before I am scanned again, as I am not too sure it will work and I don't want to go TOO long with progression. I will keep you posted on my results next week.
We did indeed have quite a bit of snow last weekend - about 12 inches of heavy wet slush that brought a lot of trees down. We were without power for 2 days, but for some it is taking a week! My kids have been home from school the whole week, using all of their snow days, and it is barely November! But, this is the Northeast, so we can never rule out anything weather-wise
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Karen - thinking of you, and hoping this is a local recurrence only that will be easily controlled.
Bak - I'm so happy to hear you are done! I know the Abraxane was kicking your butt.
Christina - glad to hear the Halavan isn't too hard on you. I know that I will be on that drug sometime in the future, so your experience is very valuable to me.
Best!
Susan0 -
Hello sam52
Thank you very much for the link and your message about the work on turning ER-ves to ER+ves. I did read about this some time ago and posted information about it somewhere on this thread. I do remember feeling concerned about it as it struck me as tampering too much with what was happening in someone's body. I also felt that it was being done in order to have a cheap treatment for negatives, that is Tamoxifen. There is no knowing where this tampering would go. I get the feeling that the pharmaceutical companies in league with the medical establishment will try to off load a drug for all kinds of ailments in the name of big profits.Do you remember how we wrote about the positives of negatives and the negatives of positives? I know that there is a lot of doom and gloom about being diagnosed as TN and that it is better to be diagnosed as ER+. However, I know that Tamoxifen has all kinds of nasty side effects and that some women have to be taken off it. Even with the other hormonal drugs used on post-menopausal women, such as Arimidex and Aromasin, there are side effects. Because of this I feel that in a way I am more at ease with not having anything to take, and my body has been able to recover naturally from the effects of chemotherapy, surgery and radiotherapy, without having to deal with other drugs.
I am certainly relieved that I was HER2- and have not had to take Herceptin, which I know can really badly affect the heart.
I do not now feel as afraid as I was originally about being diagnosed as TN. Knowing how I feel about medication, it probably would have bothered me to be on hormonal drugs for so long.
I feel that being diagnosed as triple positive and having all the treatment, plus the hormonal drugs plus Herceptin, must be a real challenge.
I remember my consultant telling me the prognosis was not good with TN but that was only because she did not have anything to give me post-treatment.
I think I would have had great reservations about having my body somehow manipulated to become positive. Moreover, I have read that if you stay on Tamoxifen for a long time you can end up being negative anyway! It is all a bit Frankenstein!
I shall read you link with great interest and see if it makes me change my mind.
With reference to your tumour having some negative in it, with my tumour the progesterone was 5% but the consultant said that made me triple negative. I have read that oestrogen is the villain but that progesterone is the great protector.
I hope you manage to have a little bit of relaxation this weekend.
Thinking of you.
Sylvia0 -
Hello bak94
I was so glad to know that you are feeling a bit better today.I was very interested in what you had to say about that lady and spontaneous remission. I think that our body is full of surprises and we can never be really sure how it is going to react. I can imagine how good you must have felt to hear that story. It could be a mind over matter situation. It is amazing what the body can do.
I have also read that when cancer patients do die it is often not as a result of the cancer but as a result of what the cancer drugs have done to them. The harsh treatment we all go through when we are diagnosed with cancer obviously takes a terrible toll on our body. It keeps us alive, but at a price. I feel very strongly that the medical establishment should not sit back on its laurels with this treatment that so devastates the body, but should be going towards treatment of cancer that is more targeted and less harmful. I do not like the fact that cancer treatment is a multi-billion dollar industry. We need more emphasis on prevention for developing cancer and preventing recurrence and metastases.
I feel the idea of very high fevers and near starvation states because of this and then spontaneous remission has a lot going for it.
Have a good weekend, relax and enjoy every moment.
Best wishes
Sylvia0 -
Hello Suze35
Thank you for your post. We shall always be thinking of you on this thread and admiring your courage.I was glad to know that the side effects from chemotherapy have been minimal so far. I suppose there will be bad days and when they come I am sure you will find a way to get through them.
I sincerely hope that all will go well with the CT scan on Monday. Please let us know how you get on. I do so hope that there is no progression. At least you know that if there is you will be switched to the Abraxane/experimental drug arm. I can understand that you want to be vigilant.
I do not envy you all that snow. I sometimes wonder how I survived in Canada for seventeen years with all that snow and cold. I was in Montreal for three years and that was really snowy, Ottawa for more than nine years and then London, Ontario, for nearly five years. I can remember some nasty ice storms in Ottawa.
Have a good weekend with your family.
Best wishes
Sylvia0 -
Hello Sam52
I have just read the Science Daily article about the technique of switching triple negative breast cancer cells to hormone receptor positive cells. I found it very interesting, especially the mention of yet another kind of receptor, the Notch receptor protein. I must say that I do have reservations about all of this as I think you would get a yo-yo effect with cells going from +ve to -ve and back to +ve. I am not a scientist, but I do not think I would want it. Of course, that is my own personal opinion.With cancer, I think each individual has to decide what they will consent to and what they will not accept. I know that when I was going through treatment I tried to avoid any medication other than what I received on the day of my chemotherapy and for two or three days after that. I found I did not need anything else. I did have homoeopathic treatment to help alleviate any problems. I did not have any, so either the homoeopathic treatment worked or I may not have had the problems without it.
I did Google Notch and found a whole load of information about it, especially in connection with cancer. There was also information about RAS and MAPK. The article I read was a bit too technical for me. I think it was meant for researchers.
I do think that we may get into too much information now about cancer in general and breast cancer in particular. From all this recent reading I tend to think that a cancerous breast is made up of various receptors and that we probably have a mixture of them and the doctors decide on the receptor status that they give us for their own convenience in order to give us a pathway of treatment. I think we can end up knowing too much and becoming very confused. All we really need is the basics, type of breast cancer, receptor status, stage, grade, and the path of treatment, the specific chemotherapy drugs and for how long, type of surgery, radiotherapy and how long. We then have to rely on check ups.
One thing you may be able to answer for me. Since we all have cancer in our body, that may or may not become a problem, if you have blood tests for cancer markers, will they show zero if you have not got cancer that has become a problem?
Best wishes
Sylvia0 -
Hello everyone
I thought I would let you know that tomorrow I am going out of town for a few days for the funeral of a family member. I hope to be back by Wednesday. Please keep posting and supporting one another.We shall all be thinking of suze35 on Monday when she has a CT scan. We are all thinking of bak94 as she patiently waits for surgery on November 30th. We all hope that while waiting she will have more days that are good to her than not so good. We shall all be thinking of christina1961 as she continues with the eribulin trial. We are all thinking of mccrimmon324 as she goes through radiotherapy. As for Maria_Malta we hope she continues to make progress after surgery and that as she approaches radiotherapy all will go well. To BernieEllen our best wishes as she gets near to the end of her radiotherapy.
I know that all of you will have Karen3 in your thoughts as she waits for surgery. We all hope she had good news with her scans.
A special Hello to sam52 and hoping that all goes well with her father.
A special thanks to all of you who are viewing this thread. We all hope that you are finding it useful and supportive.
Finally, a snippet of information to conclude what I posted about preventing cancer deaths according to the American Cancer Society. The tips are as follows.
Do not smoke or use any tobacco products.
Get screened for cancer regularly. This includes physical exams, blood tests, imaging and X-rays and genetic tests.
Limit your alcohol consumption - no more than one small drink per day for women.
Protect your skin from the sun.
Be physically active.
Keep your weight in the normal range for your height. This means keeping to a body mass index (BMI) of 25 or less.
Do not take hormone replacement therapy to treat symptoms of menopause.
In consultation with your doctor, consider taking medications to reduce your cancer risk. For example, drugs called selective oestrogen receptor modulators.
Avoid exposure to cancer causing substances. Radiation exposure and some chemicals are known to cause cancer.
Eat a diet that reduces the risk of cancer. Avoid too much red meat, avoid processed meats, eat at least five servings of different fruit and non-starchy vegetables. Minimise sugary drinks, juices, desserts, candies, refined breads and bagels and chips.
That is all for today.
Best wishes
Sylvia.To sam52
I was wondering why there are Tamoxifen failures in certain women with hormonal breast cancer. Do you think that this is because the cancerous cells are converting to negative ones?
Sylvia
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Hello Sylvia
You are just so thoughtful, remembering everyone's situation and keeping everyone in the loop.
Your posts are also informative and I am sure helpful to those who are currently undergoing treatment.
I know I am not the only one to appreciate your efforts. I am sorry to read that you have to attend a family funeral.Was that your uncle whom you have mentioned in the past?
I am just back in London this evening after taking my father home on Saturday.This morning I had organised a visit from his GP, a social worker and the Red Cross, who run a brilliant programme called 'Home from Hospital'. They came at 10 am,11am and 12 noon respectively, and I must say my head was spinning after all that. At least we seem to have got something moving to try and keep my father safe and also to further investigate why he collapsed.
Further to your last query, regarding tamoxifen; I do know that there are some people who do not metabolise it adequately. There is apparently a test in the States, which will determine whether you are a good metaboliser of tamoxifen and so whether it will be helpful to take it.I also know that you can become resistant to it,and then it can actually become counter-productive to take it.Finally,I have also read that if you have a HER2 positive tumor, then tamoxifen is not as effectiive as an aromatase inhibitor.So these all seem to be reasons why some people are tamoxifen 'failures'.The same thing, of course, also applies to aromatase inhibitors; taking them does not necessarily mean that you will not have a relapse or progression.It does very much seem to be a case of 'hoping for the best' and crossing fingers and toes....
With love to you,
Sam
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Hello Sam52
Thank you for your post. Thank you for the nice things you said about the thread. I do want to do it properly and I do try to make sure that I keep up to date with what is happening to the small group of ladies that post regularly and keep the thread going. At the same time I try to keep circulating in formation so that all those reading the thread can keep up to date with the procedures that all breast cancer patients will have to go through, so that they know what to expect. I also try to keep circulating the procedures, so that newly diagnosed patients can join the thread with ease. I also try to support family members and friends with all that they go through when someone close to them is diagnosed with breast cancer. I must admit that I am a little disappointed that not more people who have been diagnosed are not posting, but just reading. I did start the thread because I thought that TNBC was in the dark ages in this country and that this thread would help Brits.I got back yesterday from the funeral in Essex. This one was for an elderly aunt who was a very important part of my life. She had dementia and had been lying in bed in a nursing home for the past three years and had rarely spoken or opened her eyes during most of that time. She died on October 26th and although sad for me, it was a happy release for her. October seems to be a bad month for me. Last year my uncle died of throat cancer on October 22nd, so I was in Essex for his funeral. The year before that uncle's son just dropped dead of an aneurysm on October 21st He was only sixty and very fit. My own brother died of cancer on October 21st in 1995. You can see it is not a happy month for me.
I was glad to know that you had got your father safely back to his home. I do hope your father will be alright in the hands of the various social services. You have done a brilliant job in getting all of that organised. I can understand how your head was spinning as it can all be very bureaucratic. I do hope it will all work out. I find that ageing and losing one's independence is very difficult. I wonder how we shall cope as we age more. There are three residents here that have the social services coming in on a daily basis and it all seems rather stressful. You are right to investigate why your father collapsed. Please let me know what happens.
Thank you for your information about Tamoxifen. I think it is a very good idea about the test in the States that determines whether you can metabolise Tamoxifen or not. I wonder what it is that determines this and whether it is connected in some way to oestrogen coming from outside sources. It could be that ER+ breast cancer in quite a lot of women may be connected to this outside oestrogen. We should have the test here. I have also read that you can become resistant to it. I would think this is the case with a lot of medication. We have only to consider what is happening with antibiotic resistance. Just yesterday on the radio I was listening to someone talking about all the new antibiotic resistant bugs that are developing and how we urgently need new antibiotics.
I was very interested in what you said about Tamoxifen not being as effective as an aromatase inhibitor if you have HER2+ tumour. I know someone who is triple positive and she has been on Tamoxifen. She has now finished treatment, but I think she might still be having Herceptin injections. She is in remission, and was going into a trial for a new drug, but she has decided against it.
I agree with you that whatever treatment we are given, there is no guarantee that it will work, and even if it works for a time, there is always the possibility that it will stop working. We all just have to hope for the best, whatever type of breast cancer we have and whatever the receptor status.
I hope this week at school has not been too stressful. It is only six weeks until Christmas as of Sunday November 13th. When will you break up from school?
All the very best.
Love
Sylvia0 -
Hello everyone
I just wanted to let you all know that I am now back in Exmouth and updating the thread. I hope the fact that you have not been posting to one another in my absence means that you are all coping well and getting on with your treatment.To suze35, how did your scan go on November 7th?
To bak94, I hope you are having a good week. It is not long to go for your surgery.
To christina1961, I hope all is going well with the eribulin.
To mccrimmon324, I hope all is going well with the radiotherapy.
To Maria_Malta, I hope you have recovered from your surgery and that you now have a date for your radiotherapy. I am hoping it will all be over for you before the end of the year, and that is only seven weeks away.
To BernieEllen, I hope all is well with the radiotherapy. Can you tell us the date for your last session.
To Karen3, how did your scans go and do you have a date for your surgery?
To all the Brits that posted when the thread first started, I do hope that all is well with all of you. To everyone using the thread in whatever way, I do hope it is helping. If anyone has anything in particular they would like us to discuss, please let us know. If you have any useful information or any useful websites, please do not hesitate to post.
That is all for now. I am recovering from a 630 mile trip and a sad farewell to a much loved elderly aunt.
Best wishes
Sylvia0 -
Slyvia, thank you for thinking of me. I have been doing fine, have been going to radiation every morning then off to work. Still trying to get caught up from all the time I missed during chemo. Have also started doing my eliptical, an hour a day, and am amazed at how much less time down time I have these days. It does feel nice, like I'm getting back to normal.
I'm very sorry to hear about your aunt. My grandmother passed away this past July, she was in the late stages of alzhiemers, and had no memory or ability to speak really. Now I know she's with my mom and has all of her wonderful memories back as I'm sure your aunt does as well.
Hope everyone is doing well.
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Sylvia,
I'm very sorry to hear of the loss of your aunt. It has always seemed to accentuate the sadness when one has to travel so long for a funeral and distractions are few.
My trial is going well with minimal side effects - just a few days of achiness and fatigue each cycle.
I wanted to post this exciting news about a vaccine trial that I saw over in the clinical trials thread - thank you to the one who posted it!:
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Hello mccrimmon324
Thank you for your post. I was so glad to know that all is going well with your radiotherapy and that you are able to go off to work after your treatment. I can understand your wanting to catch up with your work, but make sure you do not overdo things.I was glad to know that you are back doing your elliptical for an hour a day. That sounds quite a lot so you must be very determined. What does it involve?
I was glad to know that you are not feeling down so much these days, as that is a very good sign and is certainly an indication that you are getting back to normal. I certainly felt that the worst was behind me once I had finished chemotherapy and surgery. The worst thing about radiotherapy is having to go in five days a week. I was listening to the radio yesterday and was very annoyed to hear about some women having to go on long journeys to specialist radiotherapy clinics to get their treatment, because their local hospitals are not providing the treatment and seem not to have enough machines. I listened to an interview about it and felt that the person being interviewed could not really see the problems from the patient's point of view.
I was sorry to hear that your grandmother had died this year and that she also had Alzheimer's disease. Dementia is the worst kind of illness, because you are not in control of your mind. The longer you live the more likely you are to get it, but younger people get it as well. I was so sorry to learn that your mother had also died. I feel that she could not have been very old.
That is all for now.
Best wishes.
Sylvia0 -
Hi Slvia, so sorry to hear of the loss of your aunt. Thinking of you.
I finished rads tuesday, just having a few days relaxing. The burn is painful but not so much that i am concerned. Just give it all time to heal.
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Hello BernieEllen
Thank you for your kind words about my aunt.Congratulations on finishing your radiotherapy, which means you have now finished the orthodox treatment offered. You can now sit back, relax and get back to a normal life. You will be able to put breast cancer more to the back of your mind. If you follow what goes on in the UK, you should have scans as post treatment and then have three-monthly check ups for a couple of years and then six-monthly. Here in the UK we alternate between check ups with the oncologist and breast surgeon consultant.
Please keep on the thread as your help and support will be invaluable to others. We all have to keep up to date about research into TNBC, possible new drugs and something preventive. In the meantime we can all do the things under our control, such as nutrition, exercise, avoidance of stress and generally relaxing and looking on the bright side of life.
Well done BernieEllen, you have got through this challenging journey.
Best wishes
Sylvia0 -
Hello christina1961
Thank you for your post and your kind words about the loss of my aunt. It was a rather sad day for me but a blessing for my aunt. She was a very important part of my childhood and my adulthood and it rather ends an era for me. It was a tiring journey from Devon to Essex, especially as our roads are very congested. We did 660 miles in all, of which 460 miles was the trip itself. It was good to see some family members that I had not seen for a year, although we keep in touch by phone and e-mail.I was so glad to know that all is going well and that you are having minimal side effects, just aches and fatigue. Make sure you get plenty of rest. If I remember correctly, you are doing the eribulin trial as a preventive measure. If I am correct in this then this is very important for all of us, as it could mean that eribulin could become standard practice. Was it the fact that there was this debate about your ER+ status that got you on the eribulin and does that mean it would not be of use for TNBC? Please keep us informed about how you are coping.
Thank you for the link. I am going to read it after I have finished some work I have to do and then I shall get back to you.
Best wishes
Sylvia0 -
Congrats on finishing Radiation Bernie Ellen!
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Hello christina1961
I have just been reading the article about a vaccine to treat breast and ovarian cancers that shows promise. I saw that so far the study of advanced breast and ovarian cancer patients is just a small one, but that is always the case. It is good that it improves overall survival times and stops the disease for a handful of patients. Anything that shows promise is good news for cancer patients and especially something like this PANVAC vaccine which is administered through monthly shots. If only we could get away from the long and tiring chemotherapy treatments would be so good. It looks as though such a vaccine could be a last resort for metastatic patients who had exhausted their chemotherapy treatments.It would be good if we could have trials of this vaccine on patients with primary breast cancer to see how they fare. They would have to be compared to patients having the standard chemotherapy treatment. It could be that since their immune system has not been compromised with standard chemotherapy drugs, the vaccine would have even better results. Just imagine if breast cancer could be treated with monthly shots of a vaccine.
I would certainly recommend that all of you viewing this thread read this article as per the link. I would like to add my thanks to the person who posted this on the Clinical Trials thread on breastcancer.org.
We in the UK have to be especially vigilant in keeping up to date with the new drugs that are becoming available and we have to make sure that we are allowed to get on trials if we feel we need them and we have to make sure that we are not deprived of them in the name of cost. There is no price that is too much if it is a matter of a person's life and extra survival time.
I thought you would like to know christina1961 that I have just found an article about Halaven (eribulin) entitled NICE Says NO to Breast Cancer Treatment with Halaven. NICE stands for National Institute for Clinical Excellence and it is a bureaucracy that we have here in the UK that decides whether we get certain drugs.
Please read this article at the following link:
http://www.inpharm.com/news/162867/nice-eisai-breast-cancer-treatment-halaven
Halaven is a new chemotherapy treatment for patients whose disease has progressed after at least two chemotherapy regimens for advanced and metastatic disease. It does help survival rates. NICE says the price of the drug is not cost effective. This kind of statement makes me hopping mad! I bet the people making this decision would want it for themselves.
NICE also emphasised the severity of the side effects. They quote alopecia (hair loss), febrile neutropenia and peripheral neuropathy. NICE says this makes it less desirable than other drugs. I do not understand this because these are certainly common side effects of drugs used for other chemotherapy.
The drug company says that Halaven provides a new option for women who do not respond to or become resistant to anthracyclines, taxanes and in many cases, capecitabine.
I think this decision by NICE is disgraceful and all the more so because it was being offered at the lowest price in the world to the UK National Health Service (NHS). I think it should be available.
To any of you reading this thread and who feel they could benefit from this drug, please make yourself heard to your medical teams, members of Parliament etc. I remember back in 2005 when I was diagnosed that women were fighting and going to court against NICE to get Herceptin. Now I think it is standard practice to get it.
I welcome your comments.
Best wishes.
Sylvia0 -
Hello suze35
I have been catching up on my reading on some of the threads, so I know you have been having a very difficult time and have been in pain. I do hope you are feeling better today. I was sorry to learn that you have had some progression and I sincerely hope that the drugs you are on will help. I know you are strong and a fighter and that you will give this awful disease all the fight you have.I hope that the Tigatuzumab, a monoclonal antibody, will be of great help. I have been reading an article about it on UAB News and it does sound very promising. In this article it says that this drug appears to be the most effective against TNBC.
If you need it, I do hope you will get Halaven (eribulin). This drug also seems to be of great benefit for locally advanced or metastatic breast cancer.
We are all thinking of you and LauraJane. The two of you are amazing and an inspiration to all of us. My very best wishes to you.
Sylvia.
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Sylvia,
Just quickly - (working as usual!) - the NICE decision made me angry also. I have had two infusions of eribulin. I feel as if I have a light flu for a few days, then back to my new "normal" self (aches and pains from TAC, surgery, rads.) I have not lost one hair yet. Of course, it is early on, but I am not suffering from many side effects and certainly no side effects that are not commonplace with the other chemotherapy drugs. My counts dipped down to WBC .7 this week and I remain anemic, but the trial nurse told me today that the white cells should bounce back before next Friday's treatment. She also said I was a "small person" and the dose is the same for everyone, so they could adjust the dose if needed. (65.5 inches tall, 134 lbs.)
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Hello christina1961
Thank you for your post. I do appreciate your taking the time to keep in touch when I know you are busy working.I think, with reference to NICE, that they are very penny pinching and will use any excuse not to allow drugs. I do not think NICE is very popular here, and our present coalition government did say they would get rid of it, before last year's election. Now that is all forgotten after the election. I feel strongly that drugs should be decided on between a patient and the doctor, not bureaucrats.
It is good to know that so far you are not suffering too much from side effects with the eribulin. I do hope that your white blood count will go back to normal before next Friday's treatment. We shall all be thinking of you. You mentioned that you were anaemic and I was wondering whether you are taking any iron supplements. I took them all through my chemotherapy and I kept my red blood cells at normal levels. You need to take it with vitamin C so as to absorb it better. I also ate plenty of dried figs, prunes and raisins.
I was interested to know that with the eribulin everyone gets the same dose regardless of height and weight, because we know that with standard chemotherapy the dose depends on our weight and height. I am 70.5 inches and weigh 154 lbs.
I thought you would be interested to know that I was looking at some of the stage IV metastatic threads and I saw that someone had posted to say that she had been on the PANVAC vaccine with Taxotere (docetaxel) and had had progression. I feel that in the UK we are not quite keeping up with other countries in the treatment of breast cancer or cancer in general. It would be useful to hear from some Brits going through breast cancer treatment to find out exactly what is now being used, especially with stage IV breast cancer.
If I remember correctly, the person was asking about Taxotere (paclitaxel), Navelbine (vinorelbine) and Afinitor (everolimus RAD001). The side effects were said to be skin rashes and kidney problems. I read somewhere else that as of October 2010 phase III trials were under way with this drug for advanced breast cancer, in combination with Aromasin (exemestane) and that it significantly improved progression-free survival time. We have to remember that Aromasin is for ER+ve. Afinitor is obviously being used for kidney cancer, but once again NICE has rejected it for the NHS on grounds of cost.
There is lots of information about these drugs if you go to Google.
I also found mention of something called gabatin for neuropathy. Do you know anything about this? My GP told me that nothing could help it and that I had get used to living with it in my feet! A podiatrist told me the same.
I hope you are having a good weekend.
Best wishes
Sylvia0 -
Sylvia,
I read about gabatin for neuropathy somewhere on this board and I belive it has been helpful for some. I don't know anything else about it, though. If I find the thread I will repost it for you.
Thank you for the advice regarding Vitamin C. I did not realize that it was important for iron absorption. I have been taking a low dosage multi-vitamin with iron but I plan to ask the trial nurse and my oncolcogist Friday if I can take something stronger. I am not supposed to take anti-oxidants right now but I believe they will ok an iron supplement. The fruits you mentioned sound delicious. I tried to eat some greens today for the iron but was not successful
.I hope you are enjoying your weekend as well. I managed to walk two miles earlier today. It is around 59 degrees and rather blustery here but it felt good to get outside for a while.
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Hello christina1961
Thank you for your post. I shall be interested to know what your trial nurse and your oncologist say about taking stronger dose vitamins when you see them on Friday. I remember when I was diagnosed that the orthodox doctors seemed to be against them. However, I took vitamins all through my treatment and had no problems. Nowadays I take a good multi-vitamin tablet that has just about everything in it, but no iron. I take a separate iron and vitamin C tablet (14 mg of iron and 60 mg of vitamin C) and I also take a 500 mg vitamin C tablet. I often have one day a week, usually Sundays, when I do not take anything, to give my body a rest.I feel it is important to eat greens, not only for iron, but also for folic acid. I have read that spinach has the highest iron content, but that it is not easily absorbed. You hear so many different things that in the end you have to decide what you think is best for you. It is all about heme and non-heme iron. If you eat meat, especially beef, the iron is supposed to be more easily absorbed. Since I do not eat any meat, I try to get the iron through other sources. I also take calcium supplements, vitamin D and magnesium to help the osteoporosis caused through my breast cancer treatment and a now cured over active parathyroid. I do everything in my power in the hope of preventing cancer in the other breast or recurrence or metastases. I am a great believer in trying to help yourself.
I have had a quiet weekend as it is turning very cold here. Congratulations on walking two miles yesterday in your blustery weather. I agree it is good to get outside and get some good fresh air into our lungs. We can get very lethargic in centrally heated homes.
Best wishes
Sylvia0 -
Hello everyone
I thought I would add a bit of information that I saw in the press today. It is all about a new cancer drug that makes cancer cells "commit suicide". It says that this radical new drug will bring hope to patients with aggressive and deadly tumours and could be available in as little as five years.It pleased me to read that this treatment would be delivered in pill form and would have very few side effects. If this could happen it would be progress indeed. It is also stated that tumorous cells would not become resistant as they do with current therapies.
The drug is known as KG5 and was created by a group of American scientists.
Apparently they have proved effective in tests against pancreatic, breast and kidney cancers. It could well have a positive effect on a broad range of other tumours.
You can find information online in the Nature Medicine Journal.
It appears that KG5 works in a different way to traditional therapies by altering the structure of a cancer growth protein, an enzyme known as RAF.
Those of you who look this up online might like to let me know what you think. It may well be that you American ladies already know about this drug. I am well aware that we are behind you in the UK.
The other snippet of information is about how alcohol and obesity are fuelling soaring cancer rates in the UK. It appears that Brits are eating and drinking themselves to death. On this thread we all know that alcohol is a carcinogen and that plenty of the junk food around is no better than poison. These two things are especially implicated in oesophageal cancer and liver cancer, which are up by more than 70% in the UK, far worse that in Europe. It is sad that people are doing this to themselves. It is awful to be over-eating, especially when we have starving people in the world. In this country binge drinking is a terrible problem and people seem to think that it is fun to get drunk!!
That is all for today. I hope you have all started the week well.
Sylvia.
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Hello everyone
The thread appears to have gone dead. I hope everything is alright with everyone.
Yesterday I decided that I would like to get the most recent information about TNBC, so I Googled and put in the following sentence. "The latest research concerning triple negative breast cancer" and I was surprised that I got to a website with almost the identical sentence. There is an unbelievable amount of information on this website. If you type in the sentence mentioned you will get to it and find so much that is useful. What I have been doing is working my way from the main front page and clicking on all the headings underlined. It will take quite a time to do a thorough search. I do hope you will take the time to have a look at some of it and let me know what you think. One thing I did pick up on was that often any new tumours that occur after primary TNBC are often ER+ve.
I shall post snippets of information over the coming weeks to cut through a lot of the information.
Thinking of you all. Best wishes
Sylvia
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Hi Slyvia,
Although I haven't been posting as much I still read every post. I'm going thru radiation every day, working and trying to get my excercising in. It seems to be taking up alot of my time and we are also trying to shop for a new car as mine is not going to last much longer. At least with everything going on it tends to keep my mind from wandering back to "C".
I'm enjoying watching my hair grow, its seems to have gotten darker just over the weekend so I'm hoping that it will really take off shortly as I'm 7 weeks PFC now. Hope everyone is doing well and I look forward to the snippits your planning on posting.
Heather
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Hi Sylvia and Heather, I have been reading the posts as well. Very interesting research, Sylvia. I went straight onto the site when i read your post.
It is taking me some time to get over the radiotherapy, mainly the fatique and learning to slow down and take care of myself.
My hair is noticably growing now.
Take care all.
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Hello mccrimmon324 (Heather)
Thank you for your post. I appreciate your taking the time to participate as I do understand that it must be very tiring to be working and going through treatment. How many more treatments do you have? I do admire you doing your exercises as well, as that must demand a lot of determination, not to mention finding the energy to do them. Keeping busy as you are will indeed keep your mind off BC and all the fears and anxieties that it brings with it.I can understand how much enjoyment you must get from watching your hair grow back. It will take time, but it will get back to normal.
Best wishes
Sylvia0 -
Hello BernieEllen
Thank you for your post. I am glad to know that you are reading on the thread and I do understand that you will be suffering fatigue after your radiotherapy. Remember that the radiation goes on working in your body for sometime after you finish your treatment. It will probably still feel as though you are having the treatment. Remember also that your body will not have recovered from the chemotherapy. The side effects of that lethal dose can go on for a long time. I am six years and five months away from diagnosis and I do not think I have ever regained the tremendous energy that I had pre-diagnosis. We all have to take into consideration that the further we get from diagnosis we have to add in the extra age factor. You will have to learn to slow down and with your bipolar it will probably be a bit more challenging to slow down. I am very active, but can suddenly feel very tired. You will also have to learn to take great care of yourself, as your immune system will need a lot of help.I was glad to know that your hair is really growing now. That will be good news for Heather.
I was glad to know that you went straight to the website that I mentioned. I know that we all have to be vigilant about what we read on the internet, but I think on this thread we are all sufficiently informed to distinguish between what sounds acceptable and what is rubbish.
Best wishes
Sylvia0
