Keytruda Joint Pain

[Lexis6767]

I am stage 4 nsclc with mets to bone and have been doing Keytruda since December. At first there was mild joint and muscle pain, and I've heard most st people do have that. However my wrists and hands are now almost completely lame. I can barely use them at all without extreme pain. Has anyone else experienced this? I go Monday and I'm worried they'll stop the Keytruda. That worries me because my last scans showed improvement. I'm just not sure I can live much longer with this pain though. I went from being an almost completely independent woman to almost an invalid in a matter of weeks. Thank God for my husband's help and compassion, but I want to be able to take care of him too.

[GMC1]

I swear by Cod Liver Oil pills (Jels) for joint pain. Doubt it helps muscles.

When I have a flair up, I try to take 3 pills 3 times a day for several days. You can buy them anywhere and some bottles say no fishy taste or after taste. The Norwegians swear by them and so do I. Not sure they will help in this case, but they are like a miracle for arthritis. It is Cod Liver not Fish Oil.

Gloria

[FtB_Peggy]

Lexis, if you haven't, please call your oncologist now. They need to know the pain you are in, you should not be suffering like you are. Please take care of yourself!

[Denzie Moderator Volunteer]

Please do contact your oncologist as Peggy suggested. Keytruda was given expedited approval because of its success rates. Because of that expedited approval they have not finished learning about its side effects yet.

A dear friend of mine developed rheumatoid arthritis and liver impairment after she began using it. Her doctor who denied the RA as a side effect apologized to her this month and said they’re finding it is a problem.

You may need to come off this ASAP. For patients who experience negative side effects this can be life threatening.

[Lexis6767 in reply to Denzie]

Thank you both. We will definitely talk to the doctor Monday about this. I didn't want to come off of it before, but now I think I do. I only see it getting worse with each treatment. My hands and wrists are almost non functional at this point.

[Lexis6767]

Update to my original post- When I went for my treatment that Monday, they ran labs as usual. They always check my phosphorus because I also get Xgeva shots every 4 weeks, and Xgeva is known to lower your phosphorus levels. Well my level was 0.5 and they admitted me to the hospital right then. I was on IV phosphorus for four days (this has been 3 weeks ago I think). My level won't go and stay up though I began to feel better being on the IV phosphorus and fluids. Now that I'm home I have to take oral supplements plus I've had two more infusions and will need more. I felt better in the hospital, but who wants to live there?

The scary thing is that no one knows why this has happened (severe hypophosmatemia). A kidney specialist thinks it was caused by the Xgeva shot-which I've taken for 16 months with no issues ever and always normal phosphorus levels. My oncologist thinks it was caused by an iron infusion (Injectafer) that they just happened to have given me on the same day as the Xgeva shot .

I've started researching the iron and found evidence on other blogs where people who had received Injectafer - all having different types of medical conditions, not just cancer-also got severe hypophosmatemia. Their symptoms and experiences are EXACTLY like mine. Sadly, some of these people are suffering a year later. Most people suffered for longer than usual because they don't get regular phosphorus checks. I was lucky they caught my level when they did because it could have put me in a coma had it gone too much longer.

Right now we are still working on getting my phosphorus up and I don't know how long, or which direction I'll be going from here. I just wonder if there might be more people out there or in here with this issue? I'll probably write another post tomorrow referencing the iron infusion specifically, and see if anyone has experience with that.

Thanks to everyone in this community. It feels good to feel like someone might be listening to me sometimes.

[pcsangel64]

I am having the same trouble with wrists and hands numb and tingling. Just came out of nowhere. Oncologist thinks it's carpel tunnel related. Have you had any improvement?

[Lexis6767 in reply to pcsangel64]

It took about seven months to begin to feel better. I went for weekly phosphorus infusions for two full months before it began to level out and come up to normal. My phosphorus has been fine since. I even started back with the Xgeva injections and my phos has stayed level. Of course I quit Keytruda back at that time as well, and am now on Gemsar. I won't try immunotherapy again, unfortunately.

Have you been on Keytruda, or have you had an iron infusion lately?

[pcsangel64]

Keytruda only. Because I've had such good results from it I hesitate to get off it, chemo would be next.

[pcsangel64]

I'm really having a hard time with the numbness, tingling, and pain in my hands, especially in the left hand. I can no longer open pill bottle grasp anything with my left hand.

[cmilashoski]

I don't know if this will help with your tingling and numbness I had surgery and my nerves got damaged in my hand my right hand and it constantly Burns and constantly numb I tried everything and I finally found this glove it's got copper that runs through it and I wear it 24/7 and it's like a miracle product to me I could be spoke person for this product it basically stopped all the numbness the Gabapentin didn't work oxycodone didn't work and this glove works it's called Copper Fit compression glove I'm 3 years in with this pain and discovered this and I swear it is the best product I've ever found