Advice on stopping Tamoxifen early

Talk to your haematology consultant - your doctor (GP?) may 'advise against it', but it would be better to talk to the people who have been dealing with your longterm problems, and ask them what affect this is having on your chronic condition.

I do not have a blood disorder, and was extremely fit and healthy until I found 'the lump' in Feb 2001, aged 46. The resultant treatments for a grade 3 breast tumour turned me into a complete wreck. After the surgery/chemo/radiotherapy I was put on Tamoxifen, with no guarantees that it would prevent recurrence (there was no lymph node involvement despite them ALL being removed). The Tamoxifen made me feel so dreadful for more than a year that I stopped taking it - my ongologist was astonished that I went against his recommendations. It took me another 6 months to feel human again. Now, I am fine, and no sign of recurrence - but that isn't to say it won't happen - I could get run over by a bus - but I would prefer to live my life to the max, not in pain (other than the irritating joint ache that was brought on by the Tamoxifen). You must talk to someone who knows about your chronic condition. Perhaps they could try a different treatment such as Arimidex, but other stuff has side effects too! It is a very difficult call to make - I know of one other person in my circle of friends who stopped taking it, plus 2 clients - most of them are afraid to confront their doctors - not me!

Hiya

I have no experience of this myself, so cannot respond in this way, however, my mother did use arimidex without any side effects and she thought it was fantastic, sometimes one drug suits and another doesn't, it does depend on the type of cancer which you have been treated for. I would agree that a talk with your oncologist may be the best course of action.

I would also say that Breast Cancer Care are a good set of people to talk to

I have done some work with them and they are both knowledgable and supportive and really do listen. I have given their website but if you give them a call there will be someone you can talk to no strings and no agenda. They also do breast awareness days in certain parts of the country, where people who have experienced breast cancer sped time together looking at how to heal and just generally touch base with someone who does understand.

As your doctor has said it is your choice, but be informed and confident with the choice you make, where possible and this will help greatly.

Hi,

I am so sorry to hear about the side effects you are currently experiencing taking Tamoxifen. The good news about your condition is that you have a Grade 1 slow growing tumour, which has been detected at an early stage. As you probably know early detection is vital. Can you say what the blood disorder is?

Contact <a class="go2wpf-bbcode" rel="nofollow" target="_blank" href="www.cancerbackup.org.uk">www.cancerbackup.org.uk you will be able to get some information to guide you through the decision making process, about whether to stop taking one drug and change to another. One thing I would say about any treatment you receive is that you are always entitled to a second medical opinion.

Do some research yourself too about the long term effects of taking Tamoxifen, this will help you make an informed decision.

Luv
Binah
xx

Hi and thanks for the very rapid responses I really appreciate them,

Binah my blood disorder is an aplastic aneamia called paroxysmal nocturnal heamoglobin urea quite a mouth full, basically my bone marrow has taken it upon it's self to stop working I dont produce platelets or red cell I do however have a few white cells and neutrophills. I did have some working marrow until I had my radiotherapy but that destroyed it for all it was my chest and breast that was treat.

I'm not suitable for armidex as it's for post menopausal women and whilst I am reaching that age recent hormone tests say all is well or at least that my hormones are within normal range.

I think to be honest I've already made up my mind to stop it, I know I can have a break of up to 3 months because I've already asked about that when it seemed a bone marrow transplant was immenent (unfortunately even after a world wide search I dont have a suitable donor). I may well stop it for the next month or so and see how I get on, I'm seeing my consultant on friday and will discuss it with him fortunately I've known him for many years and he has a great respect for his patients wishes and views.

I just want to feel as normal as is possible under the circumstances I'm so tired of feeling ill all the time.

Once again many thanks

Carol

Hi Carol,

Just wanted to say Hi, & sorry to hear you're not feeling well.

Take care of yourself honey:1kis:

FBx

Hi Carol

Take a look (and maybe join)

Jane Plant who run's the site had breast cancer 15+ years ago. Because of her job as a scientist she ended up finding the cause of her breast cancer. She is actively involved with other scientist's around the world looking at the cause of breast cancer and how dairy in your diet can be the trigger factor. She has a phone number on the website so you can call her and ask her your question. She is a lovely lady and is willing to help anybody with cancer.

best wishes

Hello angel hands!
I wasn't going to reply until I saw the post from reflexguy. I met a woman Friday night who had a breast removed two years ago and is now dealing with another type of cancer. She now feels that dealing with the causes of cancer would be more beneficial than treating the symptoms because, in effect, that's about all they are doing with reactive, 'orthodox' medicine. There are just so many body parts that we can donate to this disease. I can understand why one would be very hesistant and nervous about trying a holistic, natural approach to this disease since it receives little or no support from many medical practitioners and doomsayers. I know very little about Tamoxifen, but what I know isn't good. Don't wait until agencies like the FDA and various cancer 'fund-raising businesses' (because that's what they are) endorse some non-harmful treatment or substance (which can't be patented), because, you will wait a long time. I made major dietary and nutritional changes 39 months ago and have realized incredible results. What have you got to lose? More importantly, what have you got to gain?. I keep beating this drum because I hope I can influence at least one person because I am so thankful for what has happened to me that I feel I have a debt to pay. The best quote I can give you came from a urologist who told me, "I don't endorse your methods and I can't explain your results"-I would love to have you receive a similar comment.
I wish you well!!
kcat

Hi All

Thanks for the responses and good wishes, I think I need to point out that I no longer have breast cancer :o.

I have been on all the usual cancer websites but they dont really deal with the situation I'm in and no one will give any kind of answer to my query about stopping Tamoxifen early which in essence for me is a preventative measure as my breast cancer was hormone responsive.

I had surgery and radiotherapy in 2006 what I'm struggling with is the side effects of taking Tamoxifen long term I've been taking it since october 2006 and they still havent settled down.

I saw my haemotologist on friday and talked to him about stopping it before my 5 years are up, I got told I could stop it for up to 3 months if I had further treatment for my blood disorder (bone marrow transplant) when I saw my oncologist in January this year. What we've decided between us is for me to stop taking it until July when I see my surgeon and have my annual mammogram, this will give me a chance to see if all the symptoms I suffer from abate and if I feel better off it, for me its a quality of life thing,I'm ill already and quite limited in what I can do so feeling ill from a treatment for something else is making my quality of life pretty awful.

Fiona- Funnybunny Hi and thanks for the good wishes:)

I have also made lifestyle changes too I have a much better diet than I had everything in moderation not so much in the way of animal fats and dairy products and plenty of fruit and veg, I also take what exercise I can but this is limited by my blood disorder and osteo-arthritis in my hips.

Carol

I can recommend a reputable pharmacy (Tamoxifen) I received the order and it was on time and the pills work great.