Well, I was sailing along happily for months with no apparent side effects except some sleepiness and maybe an occasional ache that traveled around, when BOOM! Stiff neck, joint pain in right thumb and left knee. Really painful. My thumb hurts constantly from the wrist up, with sometimes those electric stabbing pains. My neck is stiff and painful on both sides, and some mornings I wake up feeling like my shoulders, neck and head are a cage of pain. I seem to have very slightly twisted my left knee uncrossing it at church, of all things, and now I am hobbling and it is stiff and painful. Stairs are difficult, strictly one step at a time, with only the right knee allowed to bend. (One morning I had to go up on all fours...) And now it seems to be starting up in my left thumb and elbow...
I can't do anything. I can't really weed, dig a hole, take a walk, paint what needs painting, lift anything heavy. I used to bound into the infusion center, the most energetic and healthy-seeming person there. Today I hobbled in like a semi-crippled old lady. This has happened over a period of maybe 6 weeks since my thumb first started to ache after I made a big batch of rhubarb ginger jam. (I love it: crippled by church pew sitting and jam making!!)
Last week my onc postponed my Keytruda infusion, I hoping to have it after I see him tomorrow afternoon. We had talked about two different kinds of short steroid courses, and I think it is definitely time. Ibuprofen helps, but not enough to regain function.
I'm wondering if anyone else has had this degree of joint pain, and if so what you did about it? If I were not on Keytruda, I would have been to see my PCP weeks ago, who probably would have referred me to some kind of a specialist. Have people gone that direction? CBD oil/salve? Acupuncture?
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable