Hi all. After going through 3 types of blockers I am at the end of my rope. I stopped letrozole because of the joint pain. For 1 month. My Oncologist put me on tamoxifen. Omg. The knee and ankle pain is ridiculous, and worse the neck and wrist pain too. I have a sit down job. When I need to got to the rest room… it’s embarrassing. The only relief is ice packs and then I fall asleep. Nothing helps. What do we do now?
Grammy sounds as if you have just about reached the end of your teather &, having been woken in the night with bone pain in my fingers, you have my utmost sympathy. You have a very hard choice between 3 bad alternatives … plough on with them & accept a suboptimal life, stop taking them & live with the risk/anxiety or take a lot of painkillers/do the exercise programme/diet & pray it gets better over time. I don’t think many people realise how awful these tablets can be for some. Unfortunately many in the medical profession are not remotely interested in hearing about it, probably because there’s nothing that they can do other than try different drugs or brands. Have you asked about a lower dose or alternating a week on/week off?
Hi Grammy Bear - I totally get where you’re coming from. I was put on anastrozole initially but the pain in every joint and muscle was excruciating so was changed to Tamoxifen after one month. Although the pain wasn;t as widespread with Tamoxifen, mainly right knee now and after 18 months I have times I can barely walk, getting up off sofa and sitting down is so painful I have to grunt and pull some really unflattering facial expressions - but at least I’m at home. I gave up work to focus on my recovery and one year on everything is worse to be honest. Oncologist suggested it might all be down to depression so I tried Citalopram for three months but didn;t notice any difference in fatigue or pain so have stopped it. I have also stopped the Tamoxifen five days ago - my plan is to try without for three months and see if energy and pain improves.
It’s such a dilemma but I just don’t think the Tamoxifen improves my chances enough to make this limited mobility worthwhile. I’m an active person with many hobbies but this daily nightmare has worn me down so I have no interest in anything and this is so not me. I also got permanent nerve damage from the Docataxol part of chemo which has resulted in severe tinnitus, a loud whistling in both ears all the time. It leaves me feeling very wooly headed all the time so thinking and concentration become such an effort to maintain.
Two years on from initial diagnosis and I can honestly say this past year has been worse then surgery, infections, chemo, and radiotherapy combined.
Well I’m sorry my reply has turned into my hard luck story - it’s just so current for me. Oncologist did say that changing brand of Tamoxifen can help as sometimes the pain is due to intolerance of the various additives used. Personally it didn;t make a difference for me but I have read quite a lot of others experiences and many have said it improved things significantly for them. Worth trying perhaps.
Good luck xx