› Forums › General Melanoma Community › Tremendous Joint and Muscle Pain. Keytruda. Gout?
- This topic has 1 reply, 1 voice, and was last updated 6 years, 9 months ago by aldrichdesigner.
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- February 28, 2018 at 3:33 pm
Hi all,
I hope everyone is doing well. I posted my story about a week or so ago and the amount of support and response that I received in just one week was phenomenal. It can be a little hard to "get involved" here as it can be very time consuming, a commodity that a lot of us don't really want to waste. Or in my case as with I'm sure many others you end up sleeping that time away unintentionally which is a shame and can be very frustrating. Anyway thank you to all that interacted with my first post.
Now, onto my current issue. If you haven't read my story yet, you can do so here. It explains that I'm a stage 4 patient taking both Keytruda and Zometa due to significant spine deterioration as well as lesions in other areas as well. So, about 2.5 weeks ago, I received my 10th or 11th treatment of Keytruda since starting back in July. We took one break after my 4th treatment because I was having some extreme ill side effects. After skipping one treatment, everything seemed to clear itself up and we went back on the Keytruda/Zometa without issue albeit I was still having a decent amount of joint/muscle/nerve pain. But it was manageable and definitely worth it for the results we have been seeing. I only get the Zometa originally every 6 weeks but we changed it to 9 weeks what will be 9 weeks ago on Friday when I'm due for my next infusion.
A lot of you that read my story seemed to think that the majority of my pain was coming from the Keytruda though rather than the Zometa and that moving to 9 weeks is probably not going to do a ton. Well, I'm starting to think that you all might be right because exactly 1 day after my last treatment (3 weeks ago friday) I woke up with tremendous joint and muscle pain in my knees and feet that was beyond anything I've experienced to date. I actually thought it was an extreme gout flare up because I do have gout and the joint pain from keytruda is very reminicent of that of a gout flare up. But this time it was in my knees too and usually my gout attacks do not impact my knees, but I've heard it's possible. Anyway, I contacted my doctor and we treated it as if it was gout and got a bunch of anti-gout meds and some antiinflamatories along with a lot of rest and have just been babying my feet. Well, I'm still in a pretty good amount of pain that I'm still using my cane, it hurts to stand up, I can barely bend to pick anything up and stairs, don't get me going on stairs. I've needed a lot of help lately just getting around and stuff. Now keep in mind, some of this is from my back being the way it is but over 3 weeks ago it wasn't this extreme.
So, onto my main question for you all. Do you think it would be a good idea to skip my infusion on Friday? With the idea that it would allow my body time to "reset" again and hopefully this joint pain subsides back to normal before we start back up again. I know many of you have experienced joint/muscle pain and discomfort on Keytruda before, did it clear up after you went off treatment or does it take considerable time for that to fade? I'm starting to actually get around the past few days although my toes and ankles are still pretty tender but I can muscle through it enough to get around and I really don't want to go in Friday and destroy all of that by getting a treatment and just being in bed ridden pain all over again.
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- March 7, 2018 at 9:05 pm
In case there is anyone wondering or having the same issue, after a follow up with my doctor before my scheduled infusion we decided to wait an extra week and just move my whole cycle forward one week to give me feet and knees some extra time and see if they don't calm down. We also added some ibuprophren to the mix which seems to be helping considerably. I'm actually back to walking around pretty well again, I still need my cane for extra balance and a little safety but overall in just a few extra days of rest I can tell a difference which is incredible. Everything just HURT so bad before and I'm so glad I didn't have to just jump right back in with another treatment.
Now, I just have to hope that when I do get my treatment on Friday that it doesn't start me back down that road of pain again. But may be a little anti-inflammatory is really all I needed, who really knows with these things. It clearly treats us all different at different times. But I guess at the end of the day it's worth it, my tumors are shrinking.
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