Tamoxifen help!

sweetsunflwr · 08-30-2011, 05:26 AM

I have been on tamoxifen for a year and 4 months. My first side effects were hot flashes and I still have them. But the pain in my bones is unbearable at times. It seems like it is a daily ritual. I get up I get ready for work once I get to work the pain starts if I do not take a pain pill I can't make it through the day. The pain started in just the legs, now it has moved to my hands and arms. I get so depressed because I can't stand for long periods of time, I can't walk for long periods of time, I can't clean nothing... I am only 41 years old and I have to rely on other people to take care of things that I used to be able to do on my own. Im very independent and this has put a big damper in my life. And I don't want to have to take pain medication the rest of the time I am on treatment which is another 4 years. Anyone else experiencing this? Please reply with your situation and what has helped you get through it please...

Debbie L. · 08-30-2011, 08:16 AM

Dear SS,

It's amazing how differently each body reacts to these endocrine treatments. It is more common to hear issues like you are having from women on AIs, and at least then, they can switch to a different AI and find relief about 50% of the time. For some, the side effects are so severe that they switch to Tamoxifen for relief. So I don't know if it would be a worthwhile option for you to try ovarian suppression and an AI or not.

In the meantime, here are some things that have helped:

1. NSAIDs (nonsteroidal anti-inflammatories) like ibuprofen (not narcotic pain pills). Celebrex may be the best of the bunch, for several reasons, but it needs a prescription and has its own side effect profile (as do all drugs).
2. Yoga, tai-chi or other stretching routines.
3. Regular exercise.
4. Some women have reported getting relief when their doctors prescribed a diuretic ("water pill"), I surmise on the theory that some swelling in or about the joints is involved in causing the pain. I have not looked for evidence on this one.

Good luck and keep us posted about what you find as solution. I know there has to be a solution for you.

Debbie Laxague

Jackie07 · 08-31-2011, 01:10 PM

Have you told your doctor about your symptoms?

Could the problems you've noticed be related to tiny blood vessel problems?

30-minute daily walk can do wonders. Please check with your doctor and find out if exercise will help.

JillaryJill · 09-01-2011, 08:55 AM

My Mom had those exact same symptoms Arimidex. She got to the point where she could not walk, excruciating pain in her knees and legs. I had to call the ambulance to transport her to the hospital. Doctors did not think it was from Arimidex, but she went off of it for 2 months and recovered perfectly. They switched her to Tamoxifin and she tolerated that for 5 years with no problems. The difference was amazing. Check with your doctor but it sounds like you need to get off of Arimidex and try something else.

Becky · 09-01-2011, 06:47 PM

Be careful on the leg pain part if you are on Tamoxifen. A serious side affect in blood clots and I will say - my family just experienced this on Tuesday when my younger sister who was treated for DCIS in Nov '10 had calf pain and had a huge clot in her left calf. In hospital 2 days to dissolve and is on injected clot busters and blood thinners as well as coumadin pills. Take no risks. An ultrasound easily diagnoses this potential life threatening problem.

SarahFoodforBC · 09-02-2011, 10:36 AM

One thing that could possibly help you is to include more of the following foods and supplements in your diet: carrots, dry beans (e.g., kidney beans), kale, mushrooms, walnuts, fatty fish such as salmon, vitamin D, fish oil. These are all safe to consume during tamoxifen treatment and have been found to be associated with reduced risk of breast cancer. Try to keep away from coffee and chocolate, which can promote bone loss.

Hope this helps.

Sarah

Rich66 · 09-02-2011, 03:12 PM

You could try Boswellia (@GNC) and low dose (2 baby) aspirin supplementation..both thought to be anticancer and anti inflammation. Mushrooms might be unwise considering ER status.

Laurel · 09-02-2011, 07:24 PM

Are you taking Vit D supplementation? Have you had your Vit D levels drawn? With AIs it has been documented that patients who supplement with Vit D in high doses have far less incidents of arthralgia (joint pain) than those who do not. I take 4000IUs daily. My vitamin D level was very low at diagnosis and I require this amount to keep levels at 50. I also recommend anti-inflamatories such as fish oil and olive oil. You can order them from Swanson Vitamins online for a very reasonable price. Good luck!

SarahFoodforBC · 09-03-2011, 08:16 AM

Re mushrooms for ER+ disease, white button mushrooms and other common supermarket varieties (not maitake mushroom) have been shown to reduce aromatase (the conversion of androgens to estrogen within the body) and are safe. White button and other mushrooms have been shown to reduce proliferation and induce cell death in ER+ cells. Also, Asian population studies have found a lower risk of breast cancer among those who consume mushrooms frequently. I am not suggesting mushroom supplements. Below are some supporting studies that you can Google if interested:

Anti-Aromatase Activity of Phytochemicals in White Button Mushrooms (Agaricus bisporus)

A case-control study on the dietary intake of mushrooms and breast cancer risk among Korean women

Dietary intakes of mushrooms and green tea combine to reduce the risk of breast cancer in Chinese women

Dietary mushrooms reduce mitogenesis and induce apoptosis and cytotoxicity in MCF-7 human breast cancer cells

TriciaV · 09-03-2011, 11:40 AM

I have also been taking good ole Tamoxifen and have been for over 4 years now. I have hated it from the start and complained to my Onc. about it. The idea was for me being only 31 that it would put me in menopause but I am no where near even now after taking it so long I have very regular periods, but all during the month I have the the moodiness, the hotflashes, I am having the bone loss all the Menopause stuff but STILL having the period.....grrrr and then there is the aching with pain all over factor that hit me about 5-6 months into taking it...I told my onc I felt like an 80 year old woman. I was intially given vicodin but I also have a very seriously enlarged liver also from the tamoxifen (dr. said it will return to normal size once Im off the the tamoxifen) so anyway they didn't want me having more acetomenophen so they put me on Norco it is stronger than vicodin but with less of the (tylenol so not to mess with my already challenged liver) We had already tried Nsaids and in this post is the first ive heard of using a water pill but I would try it.....Ive learned to deal with a lot of pain and I have the most wonderful husband in the world who really helps so much with our home and three kids. I am blessed

Rich66 · 09-03-2011, 06:52 PM

Then better to phrase it as these foods and these supplements as opposed to "the following foods and supplements" Seems many mushroom supplements are of ganoderma variety..with conflicted data in ER+. it does seem the dietary white button garden variety shroom is likely helpful to ER+.