trouble with tamoxifen

Hi, I was diagnosed 2 years ago withT2N1 invasive ductal and lobular carcinoma. Had neo adjuvant chemo(3 FEC, 3docetaxol), followed by partial mastectomy and mastoplexy, followed by4 weeks of daily rads and now on the dreaded tamoxifen. just wondered if anyone has had same as me regarding tamoxifen. I have been on it now for 16 months and after about a year of being on it I started getting gynae type symptoms. In fact if I didn’t know it was pretty impossible, I would say I felt pregnant. Period like pains, that heavy bloaty feeling, achey groins, achey pubic area. I also felt really full and bloated, really sick, my back and my leg muscles were killing me. Extreme tiredness and general aches and pains, all over abdo and legs, craps in calf muscles and hip joint pain. Oh and the hot flashes seem to have kickedup a notch to having settled to a gentle heat a few times a dayi am back to being drenched in sweat at night and feeling like I am going to explode in the day. Long story short had series of tests, Uss, CT scan and eventually a laparoscopy and hysteroscopy( not nice!) thankfully nothing nasty found except ovarian cysts and a cystic uterus with endometrial atrophy. No one seems to be able to offer any help with these symptoms, which persist intermittantly. Surgeon didn’t offer a follow up so I don’t know what the significance of the cysts are. Onc says all symptoms caused by tamoxifen but I can’t come off it as the cancer was in my nodes. Only alternative zoladex injections which she said would be worse. Has any one else experienced similar and if so any tips? Not sure how long I can take it. The nausea and back pain are probably the worse, felt so I’ll at work yesterday I passed out. Very embarrassing!

Hi there nursemakeyouwell, welcome to the BCC forums where you will find understanding and help from your fellow users

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Best wiehes
Lucy BCC

Hi there ((waves)). Firstly, sounds like you have really been through the mill these last few years and I wanted to say I am sorry you are feeling so rough now you are on Tamoxifen. I am sorry I can’t offer you much support other than to say I too have had problems on and off with Tamoxifen.  I finished active treatment last July 2013 and have been on and off the Tamoxifen since then. I have had numerous side effects including really bad headaches, awful hot flushes, general aches and pains, debilitating tiredness and low grade nausea and vomiting. I have had a bone scan, ct scans and numerous ultrasounds which have all ruled out any metastatic disease. Like yourself, my cancer had spread to my lymph nodes and as it is also very ER positive (7/8) and I am pre-menopausal I don’t have much choice in the matter, My consultant feels it is probably the Tamoxifen making me feel so unwell but has said there is no way I cannot not take it (which doesn’t really help!). I did get a bit of respite as I stopped eating carbs for a few weeks - no bread, no pasta, no potatoes etc, etc - which did seem to help a bit. But I have found this difficult to maintain long-term - especially with youngish children, cold weather and a husband who loves spaghetti bolognese and shepherds pie! I  am now on a “normalish” diet but trying to limit carb intake - swopped wraps for bread, eat rice instead of pasta, no cakes or biscuits etc - I am not sure if any of it helps to be honest. I just know I feel rubbish most of the time!  I have also tried acupuncture to help with the hot flushes - which did not make any difference - but I have not yet gone down the anti-depressant route - which I have heard does help a bit - but am just not sure I am ready for that yet. I have also tried switching brands of Tamoxifen - which did not help in my case but I have heard it has made a difference to other ladies. I think, in some cases, Tamoxifen really does not agree with some of us! I am not sure what the solution is - being pre-menopausal there is no other option. I just wanted to say that I am sorry you feel rubbish, and although I can’t help, I wanted you to know that you are not alone.   Sending hugs. 

Thanks for the reply spooky moo! ( love the screen name by the way!!!) I have tried many things re the hot flushes, evening Primose oil and cutting out Caffeine, to name a few. I haven’t tried actively cutting carbs but to be honesti don’t really eat many carbs anyway, in fact lately I don’t eat much at all. I nibble all day. I just have very little appetite and don’t fancy much, but I rarely eat things like crisp, biscuits or bread and I don’t like pasta, so the only things I could cut down on might be fruit but one of the other problems I have had since all this gynae stuff kicked off is constipation, and if I don’t eat fruit I probably won’t poo at all!!! ( sorry to be indelicate, I am a nurse and everyone knows we are obsessed with bowels!!) I am seeing my gp Next week, poor thing, I have written a whole page worth of symptoms/problems to discuss with her. HoPE she wasnt planning to see any other patients!! X