dorie4
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Posts:29
Hello!
I've been on nivolumab for about 3 months and have had increasing pain in my knee and the muscles above it. Pain meds, from OTC to Rx celebrex and now tramadol have had little effect. My onc. thought it was arthritis and ordered xrays which found no evidence of arthritis, bone mets or cartilage damage. We have not (yet) discussed the possibility that this could be nivo-related.
I am searching for an ortho doc in the nearest large city, but in the meantime I'm wondering whether it is possible, prior to CT/MRI, to distinguish nivo-pain from physical causes of joint/muscle pain, and whether there is any treatment for nivo pain.
Dorie
Forums
Reply # - January 23, 2016, 01:19 PM
My mom has had 23 nivo
My mom has had 23 nivo treatments. Has continuing and worsening joint-pains/mobility issues.
Mostly in knees. Similar to situation that you describe.
She had gotten cortisone (??) injections in/around both needs and does PT,
She says it worse in the morning. And although minor aches/pains before starting nivo its much much worsen since starting nivo.
Unfortunately we have no solution so I am very interested in seeing if anyone out there has advice.
Reply # - January 23, 2016, 02:53 PM
Hi Dorie,
Hi Dorie,
If the pain is in just one knee and the nearby muscles and there is no evidence of a bone met, that certainly seems to point to a cause other than cancer or treatment-related pain (although it doesn't completely rule those causes out). I don't think there's much of a way to distinguish pain from Nivolumab other than by eliminating other causes, or by stopping treatment to see if symptoms improve. Further workup may help reveal the cause.
If it is treatment-related, the recommendation seems to be oral pain medications, as Dr. Walko has stated:
"[M]uscle pain (myalgia) and joint pain (arthralgia) was seen in about 2-5% of patients with lung cancer who received nivolumab in one of the large trials so this can be seen but was generally mild (less than grade 3). Targeted immune system inhibitors like infliximab (Remicade) can be used for serious autoimmune adverse effects to drugs similar to nivolumab but I would recommend trying to manage the pain with a more standard oral pain medication." - http://cancergrace.org/topic/nivolumab-low-blood-count-and-joint-pain#p…
Dr. Walko also discusses the use of immune system inhibitors, but the concern is always that there will be a conflict with the treatment.
phillydaughter, I'm sorry that I don't have any further insights than those provided by Dr. Walko in your thread referenced above.
JimC
Forum moderator
Reply # - January 23, 2016, 04:31 PM
Thank you both for your
Thank you both for your responses.
I too am very sorry, phillydaughter, that your mom is having such pain. It is especially upsetting that she has found no significant relief. I think that for all cancer patients unrelieved pain is among our worst fears. I hope she has a palliative care team on board. And I wonder if a pain specialist can be called in.
Jim, the information you provided is very helpful. But could you clarify something Dr. Walko said? He said that muscle/joint pain from nivolumab was "generally mild (less than grade 3)." Is this the 1 to 10 scale we use to rate our own pain in the doctor's office, or is there another grading system used in clinical trials? If it's the 1 - 10 scale, I can tell you that my pain is way past a 3, and I suspect philly's mom would say the same.
Dorie
Reply # - January 24, 2016, 10:06 AM
Hi Dorie,
Hi Dorie,
No, the grading system to which she refers is not the "1 to 10" pain scale used by doctors. It is a treatment side-effect grading scale established by the National Cancer Institute, which is generally stated as:
1 = Mild side-effects
2 = Moderate side-effects
3 = Severe side-effects
4 = Life Threatening or Disabling side-effects
5 = Fatal
As you can see, with only these five grades, there is plenty of room for gray areas and subjectivity, but the various levels represent the extent to which a patient's daily life is affected, with grade 3 side effects often requiring hospitalization and limiting self-care for normal activities of daily living.
JimC
Forum moderator
Reply # - January 24, 2016, 12:07 PM
Excellent, Jim! Thank you. D
Excellent, Jim! Thank you.
D