Severe joint pain. Stage 4 nsclc met to lymph nodes, bone.

[mrjones6]

Bone pain, yes, but my joints, shoulder, hip, knee and ankle, are really hurting me and limiting my mobility. Any thoughts or suggestions?

[Denzie Moderator Volunteer]

Are you currently on any maintenance treatment? Perhaps a referral to a rheumatologist would be in order? Just because we have cancer doesn’t mean we can’t develop new issues like arthritis. Some issues are better managed by your primary care physician. Please let us know if you learn anything.

[mrjones6 in reply to Denzie]

The joint pain feels like I imagine arthritis must feel. Maintenence therapy? I'm on Tagrisso and Zometa. I was on Keytruda from 6/17 to 12/17. I read that Keytruda can cause damage to your joints, so idk if it's from the Keytruda or progression of met to bone? Thoughts or suggestions, experiences...

Thanks

[Denzie Moderator Volunteer in reply to mrjones6]

A very dear friend was on Keytruda and experienced the same thing. Prior to Keytruda she was participating in 5k fundraisers, sometimes she’d slow down and walk the distance with me. This year she informed me that the ache in her joints prevents her from walking or running.

Do talk to your doctor about a referral for a rheumatologist.

[Lexis6767 in reply to mrjones6]

Hello. I too am stage 4 nsclc with met to bones. I was diagnosed due to severe hip/back pain that I thought was from exercise. A CT scan showed otherwise - a lung tumor, plus it went into my femurs, ribs, pelvis and arms. I started with 6 rounds of carboplatin/alimta in December 16, then alimta alone for another 6 rounds. I had been doing really well on the carboplatin combo. People were amazed at how well I looked and acted, especially after seeing me walk with a cane right prior to diagnosis. I felt great! But once we tried to maintain with alimta alone, it began to progress.

I've now done 3 rounds of Keytruda and feel progressively horrible. Back, wrists, neck and knees- my mobility is shot and I think I may have to give up my job at this point. I have one more treatment scheduled and then we'll scan to see what's happening. I know Keytruda has had great success with a lot of people. I wonder if they all had these pains as well, or if it's just not working for me.

I'm sorry to ramble, it just seems like we have the same problem in common.

I wish you the best ~

[mrjones6 in reply to Lexis6767]

Thanks for your reply. It does sound like we have the same "side effects". It started last fall when I was on Keytruda. Stopped Keytruda in December, 2016, and started Tagrisso at the first of January. I hoped that the joint pain would resolve itself once I stopped the Keytruda.

But NO! My joint pain has continued to worsen and now I've found out that Tagrisso can damage joints as well! And the joint and bone pain together sux!

What do you do for your joint pain/damage? Lexis or anyone else?

Thanks!

[Lexis6767 in reply to mrjones6]

I have been taking a lot of ibuprorofen, which I do understand is not good. I did have an rx for low dose oxy, but I've never been a fan of that, and for this pain it does NOT work. The ibuprofen at least had made it tolerable. I meet again on Monday with my doctor and will ask if something else can be used. I am worried that I'll have to make a choice between enduring the pain or losing my kidneys/liver .

Have you been taking anything at all? I would hope that if this is such a common occurrence, there might be some pain management protocol in place. I'll definitely ask the dr Monday.

I also have a cousin who has been on Keytruda for almost a year (melanoma) but her pain is mostly hips. Besides that she seems to be fine as far as joint pain goes. She's been on a much longer and more harrowing journey than anyone I know, so I'm glad at least she doesn't have all these associated pains with this treatment.

Has your doctor recommended anything to you?

[JRuthI1946]

I have started on Medical marijuana.

I am now learning so many new facts and going to group classes at the compassion center.( where you buy the item. They are very knowledgeable about the kinds that seem to work best for certain cancers and for different pain. There is a lot of information out there

[mrjones6 in reply to JRuthI1946]

Thanks. I'm already using it!