Hiya,
Am into my 7th month of my 2 years of Zoladex injections and hate it. (Also on tamoxifen.) I have almost constant joint pain but the joints that are in pain vary. And I am generally pretty stiff jointed too. Am 36 but feel like I have the body of a 76 year old. Sometimes the pain is really bad and other times is too not much at all. Wondering if this is common on Zoladex, as not really come across much information about it, and how others deal with it. If it wasn’t for this pain I’d be doing pretty good. Also contemplated asking to come off the Zoladex but not sure how detrimental that is health-wise. I’d like to hear other people’s Zoladex stories.
Zoe
Hi.
I too had really bad side effects off Zoladex, Im on a mixture of tamoxifen and zoladex too and the side effects are bad. My onc has put me on injections every three months reather than every 4 weeks. I was gettin really really depressed in the last week, it was awful. Anyway like i said she changed me and i seem to be a lot better now!
Im also on Nolvadex (its a different brand of tamoxifen) apparantly people get less side effects while on Nolvadex but im still getting the hot flushes and weight gain etc. tamoxifen can be a cause of lots of the side effects too…its a pain in the backside i know. Maybe go to your onc and see what your options are.
Emily xx
Hi Zoe, I was on zoledex and arimidex for just over a year and suffered terrible joint pain and really bad pain in my hands couldn’t even bend my thumbs. Had a bone density scan that showed thinning of the bones, my last appointment with the onc she suggested i come off the zoledex and change to tamoxifen. I can now bend my thumbs but still suffering the joint pain. Dont however understand why i was put on the zoledex for just 12 months would of thought i would have to stay on it longer if anyone could answer me this question it would be appreciated. Helen xx
Thanks for responses. I was told that the 3-monthly Zoladex was for prostate cancer and the 4-weekly one was the one I had to be on for breast cancer. But I will ask again about it when I see the Onc next. Do you find pains worse in the mornings? Sometimes I can hardly get out of bed in the mornings because of pains and stiff joints. And also I find its worse when I’m shattered. And its a bit restricting with what I do with the kids. Am not up to doing all that I’d do before. I find if I walk around for much more than a hour without sitting to rest I’m physically wrecked for the day. Can’t decide if exercise like swimming will help or just worsen it and tire me out even more.
Zoe xx
My onc had said to me that in germany they give bc patients zol every 3 months. She did say i was the first of her patients to do it this way but the only other option for me was coming off it all together as the depression was so bad! its still giving me the same effects so im not worried, and am sure that my onc wouldnt have done anything that would have put me in any danger. Different oncs have different ways of treatin patients, but they should try and help you out if your really unhappy x
I’m sure your onc must be right. I have come across different health authorities having different treatment plans. I will talk to my onc. I must say its great reading the forums and chatting here with people that really understand first hand what its all like. Thanks. x
Hi all, Yes i am worse on a morning it takes me ages to get down the stairs!! very frightening i have only just gone 45! And if i have a bath i can’t get out once im in, what gets me is the side effects of the medication is similar to if the cancer has come back so how are you supposed to know if the pain is down to the meds, thats what i struggle with. Helen xx
Hi
I have been on Zolodex for 18 months. I am having it monthly, I have heard that people who have the 3 monthly injections have gone on to develop secondaries( I am not saying it is proven, just that I personally know of 2 men with prostate cancer who were having the monthly injections, were then switched to the 3 monthly injections and both went on to develop secondaries, also have read somewhere of this happening to some women with BC, think there is a thread on here somewhere if not it is on bc pals. anyway, I would say that although I had terrible joint pains at first, they did ease off as time went by and they are not so bad now.
best wishes
Guess what? I’m 44 now and when I was 28, I was injected with zoladex twice in one year to treat my endometriosis and I regret it. My joint pains are dreadful and I feel I get stiff in my hands. Started dropping things because my grip has got worse. Do not have it if you can!!!
Hi
Ihave had 2 monthly zoladex injections and had a three monther one. I didn’t realise how tired I was until reading these posts. I keep going to bed at 8 pm!! I do get 10 hot flushes a day and some at night.
I have had terrible diarrhea for a month and not sure if it’s related to injection or not. I have been on examastase for four months so can’t be that.
The GP is doing some tests. Thanks for all the info