Rheumatic and Musculoskeletal adverse events

Portal Forums Cancer Treatments / Symptom Management Immune-based Therapy / Vaccines Rheumatic and Musculoskeletal adverse events

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February 9, 2018 at 2:04 pm  #1293947    

cindy121

Well, apparently my elevated eosinophil white blood cell count was an indication of an immune reaction. They went up a few more times, and I was still asymptomatic, but my oncologist took me off treatment in Aug. By Sept. the pain, stiffness, cramping, swelling, hit and has continued. Been to PCP, ER, Pain Clinic, rheumatologist, physiatrist, palliative care and had ultrasound, CT, MRI, lots of bloodwork. These specialists don’t know, and I understand that; our oncologists are still in uncharted territory with IO patients who were among some of the first to be treated in clinics right after FDA approval. I need some information in (relative) lay terms to figure out how to get a proper diagnosis and treatment. This has been worse than any time before or during cancer treatment. We’re grateful for the benefits of IO, but also went into it knowing there were also risks. But many of us are here and should be celebrating a great response, but are suffering from adverse events that only became documented during our (Phase IV) treatment based on our experiences, but the lack of data being released leaves many of us helpless to get the proper care and treatment. What do people suggest?

February 10, 2018 at 7:04 am  #1293950    
JimC Forum Moderator
JimC Forum Moderator

Hi cindy121,

I’m sorry to hear that these problems persist. I’ve seen discussions of a link between ipilimumab (Yervoy) and eosinophilia, so it’s not much of a stretch to connect Opdivo with the same condition. The typical treatment for a severe immune-mediated reaction to a checkpoint inhibitor is to discontinue the treatment and initiate treatment with steroids.

Other than that, you seem to have touched all the bases, but if you haven’t had a second opinion from an oncologist at a major academic cancer center, that might be an option to pursue.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

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