Best Of

Cyborg, It made me sad to hear someone ask if anyone has ok or positive experiences on Tamoxifen.  I think these boards do a disservice to women when it comes to hormonal therapy and seeing your thread start really points it out.  A large number of women come here when they're diagnosed, post a lot during chemo, some during radiation, and those with trouble on hormonal therapy stay around, and a large number go on about their lives and do well on Tamoxifen or an AI and we never here from them again.  Or, they only pop in sometimes to say hi, and the issue of how they're doing on hormonal therapy never comes up.   The end result is the bad stories about hormonal therapy end up dominating the threads and it is a shame.  Yes, some people have SE's they can't get past and stop treatment.  Statistically over 70% never stop treatment--they usually don't post here. So, as you're reading through and getting scared (I know I was) please remember that.  Some of these threads scared me to death about starting Tamox.  I did have a rough time the first couple of months, got tolerable the next few months, easier the next 6 months, and by 14-18 months I was doing fine.  I have to take the pill bottle out and put it next to the coffee pot every morning, and I don't put it away until I take it or I'd forget I'm on it.  2.5 yrs into taking it and my only worry is remembering to take it.  (Except for the two times my Onc told me to stop it for surgery etc I can honestly say I have not missed a single day of taking it).  My unscientific observation is that going on and off and back on is hard and taking it every day is the best way to even out the side effects. I know it sounds daunting to hear of months of getting through the initial SE's, but, you know what I get in return?  YEARS of benefit. I feel lucky to have a drug that works so well for so many women that gives me peace of mind for 5 years of taking it.  Plus, studies show the benefit lasts for several years after I'm done with 5 years of taking it.  I'm young, I have a lot of years to worry about recurrence, progression, a new cancer, the ability to take a pill every morning that makes my chances better I'll take it.

My hot flashes were really bad at first--gabapentin/neurontin helped. The mood swings I had to learn to recognize when they were coming on and try to stay away from people. The insomnia I broke down and got some meds to help with.  The weight gain was and is a struggle. That I'm ticked about.  I asked my Onc why I wasn't better prepared and the answer was they didn't want it to be a self fulfilling prophecy.  Screw that, I'd rather have been warned.   Don't let anyone quote you the original articles about how weight gain on Tamox wasn't higher than placebo.  Many articles since then have shown it to be a real problem, and a recent ASCO presentation showed that premenopausal women going on it gained the most weight--thank you very little!  So, that I'd warn you about.  No way around it, it makes you menopausal and for menopausal women carbs go right to the middle. My best advice for that is to be more prepared than I was and only eat controlled portions of carbs and make them all complex carbs.If you can afford it get a trainer and get some guidance.  BC treatment changes our bodies and I had to learn a whole new way of exercising for the new "older" me.  Vaginal dryness is another whole topic.

So, yes, many many more than you'll hear from here do fine or even great on these meds, and they do work. Good luck.  Please reach out and get advice when you need it---but hopefully from someone who will encourage you to get past the first few months and stick with it