Forum Discussion
louiseg
16 years agoMember
Tamoxifen side effects?
Hi Everyone
I have read in a few people' s posts that they suffer from some side effects from taking Tamoxifen. I am 42 years old and after I have my chemo I will be put onto Tamoxifen for 5 years. What sort of problems do you have and what have you done to ease these problems?
I don't know much about cancer treatment so I am unsure whether there are alternatives or what sort of questions I should be asking my oncologist....I see her again on 27th October when I start Chemo.
Any info would be appreciated!
Thanks,
Louise
ps I have read the info in the My Journey Kit but it is very general and if possible I would love to hear some personal experiences if you are willing to share :)
109 Replies
- TraceyKMember
WOW after reading all the above re Tamoxifen I now feel a lot more informed. I started taking it mid March this year and up till now, really had no idea what it was all about. I basically rceived no information from doctors re this drug except that it was for my breast cancer that had estogen receptacles. No one tol me about any side effects. My fault, I should of asked but at the time my mind was everywhere. I have been suffering the odd headache, strong pins & needles mainly in my legs but occassionally in my arms etc also. I have days where I just feel sick in the stomache. I had no idea why until I read all the above posts. I'm seeing my oncologist next month and have already got my list of questions happening. I also have mets in my back (bone cancer) and am undergoing Zometa treatment every month. This seems to be the focus at the moment. Does anyone have any information they would like to share re Zometa etc? I would appreciate it greatly. Now that I am starting to finally get my head around my disease, the questions are starting to flow quickly. As they say "Knowledge is Power".
- TraceyKMember
WOW after reading all the above re Tamoxifen I now feel a lot more informed. I started taking it mid March this year and up till now, really had no idea what it was all about. I basically rceived no information from doctors re this drug except that it was for my breast cancer that had estogen receptacles. No one tol me about any side effects. My fault, I should of asked but at the time my mind was everywhere. I have been suffering the odd headache, strong pins & needles mainly in my legs but occassionally in my arms etc also. I have days where I just feel sick in the stomache. I had no idea why until I read all the above posts. I'm seeing my oncologist next month and have already got my list of questions happening. I also have mets in my back (bone cancer) and am undergoing Zometa treatment every month. This seems to be the focus at the moment. Does anyone have any information they would like to share re Zometa etc? I would appreciate it greatly. Now that I am starting to finally get my head around my disease, the questions are starting to flow quickly. As they say "Knowledge is Power".
- ElisaMemberHello everyone After having my hysterectomy and now breast reconstruction which I was told would not be possible. I am still doing all the things I was doing since my last post. Been on Tamoxifin for 3 years plus still no side affects like your all having. Feel healthy as a horse and this years holiday for my 4th year anniversary is IRELAND/Italy for a month, already got my tickets for Xmas have big plan for my 5 year mark which is October 2013, I will be going on a mediterranean cruise for a few months. My blood tests came back okay but now have to do a bone density. Big deal fairly standard. Glad your all talking and listening to one another because we are the ones that can help us through such a terrifying ordeal and help those who will eventually lose their lives to this hideous disease. I read every word posted and make sure I watch particular people's posts. Like me being diagnosed under 40 devastating being diagnosed at all is unforgivable. Look after each other listen to each other take the parts that may help and use them but always keep the other parts In the back of your mind, it may just make you ? Your oncologist just that little bit more when your having a hard time dealing with the fact they have no feelings. It's not you it's all their patients. Ask and educate yourself. BIG FAT CUDDLES TO YOU ALL
- toriinozdearMember
Dear Christine, Thanks for your story. I am in the process of deciding whether to take Tamoxifen now, having been on Femara for 5 months. The side effects of Femara for me were very bad for me. I have had clinical depression for 50 years, and have managed it with Prozac. I'm on a fairly large dose, 80 mg/day. After 3 months on Femara I started experiencing serious deep depression - crying all the time, no motivation, fuzzy brain. Then I realized these effects were similar to the PMT depression I would experience the last two weeks of every month when i HAD MY periods. Waves of sadness, brain fog, waking up feeling nothing is worth it, etc. I decided to come off the Femara, thank God. After only 5 days off this medication I felt alot better, and after 10 days off it I was back to my old coping, semi-cheerful but optimistic self. For me mood disorder is a life-threatening disorder, so I am very grateful that it was the femara causing the sadness and depression. Now my oncologist wants me to take Tamoxifen. I dont want to go through this mood change again -so I am very reluctant to start on the tamoxifen. I'm 65, had two kinds of breast cancer within 6 months of each other (one hormone driven, the other not), and two mastectomies. I have asked to be referred to another oncologist in N Sydney and hope she will agree to see me, as the oncologist here says very black and white things like "if breast cancer recurrs it is almost always fatal" because it recurs usually in more then one organ. The doctor in Sydney may give me the same statistics, but hopefully she will have some new information. I've always benefitted from two opinions. Do you have any opinions about alternative supplements to help estrogen metabolism, such as DIM. Thanks. Tori M-K
- PinkGillyMember
Thanks Christine for confirming what my naturopath has suggested I do. I am also doing the hormone saliva test which gives the best picture regarding oestrogen levels. Liver detox to help the liver metabolise, vit B, minerals, folic acid, estrofactors to support oestrogen metabolism. I'm also taken a herbal mixture to support adrenal function as I am carrying lots of tension in my body due to my anxiety. I'll do another saliva test in 3 months as I've started taking arimidex again to see how I go although I think that the I 3 C and the regular hormone check might be the way to go. I am feeling very well, energy level is increasing, sleeping much better. I am currently not eating meat, I think organic is the way to go and have cut down dairy intake as I had read a very convincing argument on the effect of cow's milk. It's great that you have a very supportive GP and I agree about the oncologists,when I mentioned to mine I had seen the naturopath, I got a glazed expression. Thermal imaging has also given me peace of mind and I'm happy with where I am at right now. Working full time and enjoying it, going to the gym, improving my French and being there for my three adolescents is keeping me busy and it's great to have the energy to do it all!
- DeeayMemberSome great suggestions here thanks ladies, to improve our health and survival! I've switched to buying organic fruit and vegetables. I get a fortnightly delivery which is lovely and fresh, and lasts well. It is dearer though. Woolworths also has a nice range of organic produce, grocery lines and meat. I found its made a difference to how I feel - really healthy inside! My daughter's skin has cleared and we all have more energy. It's worth the $s. All the best to us in good health! <3
- DeeayMemberSome great suggestions here thanks ladies, to improve our health and survival! I've switched to buying organic fruit and vegetables. I get a fortnightly delivery which is lovely and fresh, and lasts well. It is dearer though. Woolworths also has a nice range of organic produce, grocery lines and meat. I found its made a difference to how I feel - really healthy inside! My daughter's skin has cleared and we all have more energy. It's worth the $s. All the best to us in good health! <3
- jules_jpMember
Hi Deeay,
I had aching legs esp at night, which only occurred in my second year of tamoxifen. After some pondering and thinking what changed (was it me exercising?), I discovered that when I moved house and went to a different pharmacy I was given a different brand of tamoxifen. You might need to try a few, there is Nolvadex, Tamosin and another. I found Nolvadex the best. It might be the filler the pharmaceutical company uses. Some other ladies had the same issues.Some ladies also take 10 mg or 20 mg and fluctuate between the two after discussion with their oncologist, depending on how they tolerate the drug. Hope this helps.
Regards, Julie
- JanMacMember
Christine, many thanks for your informative & comprehensive reply. I'm inspired. I'm working my way through "What Your Doctor May Not Tell You About Breast Cancer" so I'm coming to grips with why the hormone saliva testing is a good idea. I'm also taking Coenzyme Q 10 as recommended by the naturopath to provide heart protection from Herceptin. A lot of the naturopathic help I have received has been around supporting the liver which I really needed after chemo and want to continue with for oestrogen processing.
We were in the process of changing diets anyway as my husband has recently recognised his gluten intolerance so I'm doing a lot of reading, researching, thinking & working out how to incorporate all these changes.
I'm feeling fairly positive about changing the way we live. They are not radical changes for us but even small changes take an effort. However we have the best possible reason for wanting to change.
Best wishes.
- Christine_LMember
As my very supportive GP says: our bodies do not produce oestrogen to give us breast cancer! We need oestrogen to function fully at many levels, including cardiovascular health, brain function, etc
After surgery for breast cancer 19 months ago, I have (with guidance of my GP) the following regime: I do a hormone saliva test every 6 months, which provides us with an exact "picture" of my oestrogen levels and whether my liver is in fact metabolising the oestrogen to be effectively utilised in my body. The day an oncologist offers to actually monitor my oestrogen levels and recognises the role of the liver in oestrogen metabolism, is when I will give any attention to aromatase inhibitors. I ensure that my liver is functioning well and to that effect do a regular liver detox.
Further I take I-3-C, Resveratol, Coenzyme Q 10, Quercetin, Vit C, Vit D, Vit B and some mineral supplements (monitored by hair mineral analysis). I also take calcium as I have eliminated cow's dairy from my diet (due to hormones in it) except for some occasional organic dairy treats. Also only meat which is organic and free range and which I know where it comes from. I have also greatly reduced my sugar and alcohol intake, with only occasional treats and try to generally follow an alkaline diet. Nothing extreme, just a healthy balanced approach.
Furthermore, I have completely eliminated any cosmetic and other products containing parabens and a number of other petrochemicals (e.g. in sorbalene) and harmful ingredients. I also do not drink water from clear commercial plastic bottles (only BPA free plastic) even the pink Mnt Franklin ones "supporting" breast cancer. I am taking the precautionary principle on this and accept the growing evidence that many plastic materials contain xenoestrogens which introduces foreign mimicking oestrogens into our bodies. Why take an aromatase inhibitor, when you are not eliminating other bad oestrogens from your environment and body?
I am feeling better than ever before and although nothing can remove the fear of metastasis from my life, I at least feel I am giving it my best shot with my own efforts.