Thanks for the post. It’s great to hear of women doing well who did this and great to hear you got in that early to it.
Hi Memoy, my experience has been a struggle but we also all respond differently. I did make it to nearly 2.5 yrs on Zoladex but got pulled off early by my once after the SOFT results which my new once was lead in were published suggesting it may not give much benefit for me. That was after weighing up my level3 side affects. I’m still glad I did some. Each women is different and it seems to give much greater benefit to some subgroups. I’m really unsure what gave me personally each side affect. The nausea was awful for the first year. I also had joint pains. I’d suggest any women on tamoxifen check your brand. The NHS did a study based on listening to anecdotal reports on arthralgia and switching removed it in most cases. I found the same (here, both nolvadex and genox were OK, tamosyn I could hardly walk). The only thing I found that helped everything was running over 12kms (and I wasn’t a runner before but very active). God knows why that was the sweet spot. After time some symptoms diminished then others worsened. I felt better to some degree after about 6 months of zoladex, less fatigue but I now have what appear to be sugar crashes if I don’t eat at around 3pm with complete meltdowns. I’m nearly 4 yrs in, so whilst quol of life has been poor I keep persisting. I lost a friend I met through a BC group who was trip neg and for me it helps remind me that as crap as the side effects are that I have a choice for this medication. Everyone though needs to weigh this stuff up for themselves. I think there’s lots of stuff you can play with that helps diminish some of the worst symptoms. Xo
Hi Dizzy, I finished two years on Zoladex last July. I was also on Tamoxifen but its only since finishing the Zoladex that I can see which SE’s were which. The SE’s from Zoladex started very gradually, my period stopped after the second injection, I started getting hot flushes, a few at first but eventually around 20-30 per 24 hours. The leg and joint pain probably started around the 6 month mark and continued until I finished.
I also had very erratic moods and periods of just feeling like I had the worst PMT all the time. I also put on 2 stone and could not lose it despite regular exercise and dieting.
So that was the negative stuff. Since having my last injection in July 2015, my periods came back October 2015, they have been very heavy since but regular. The leg pain has completely gone, moods back to normal, I still get very mild hot flushes but that is the tamoxifen, but they are no where near as intense or often. I have lost the two stone I put on.
But for what its worth, I’d do the Zoladex again as it was extra security and better than having cancer so whatever SE’s you do get, its worth trying to hang in there especially when you know its only for a couple of years.
Good luck,
Hi Charlotte welcome to the forum.There are some medications GP can prescribe to help with hot flushes(citrolapram is one of them,think the other is venlafexine ) if you want to give them a try.You have a double whammy with Tamoxifen and Zoladex !Hopefully others will be along soon with some advice re ovary removal .Jill
Hi Charlotte
Your post sounds very familiar. I’m on tamoxifen and Zolodex too and suffering a lot from the side effects - hot flushes , night sweats , low energy , brain fog etc. At this point I’m not clear which drug is causing what, and to boot I had a Zometa infusion the other day which can cause flu like symptoms - the last two times were fine but this time it hit me like a ton of bricks.
I was curious about your question about removal of ovaries. Is there any evidence that side effects are less pronounced than with Zolodex?
C