I'll post another note on this topic shortly, as my symptoms appear to be fairly rare relative to some of the other symptoms. I tried keyword searching the site but only found 1-2 other posts related to these topics. Perhaps this will help someone else down the road…
So, my CK levels returned to normal within a week without any need for steroids. The doctors resumed the medications and retested my blood levels 48 hours later. The CK level had jumped again to ~440. High, but not terribly concerning. We were all generally pleased, but agreed for the need to monitor this closely.
They arranged for me to come back 48 hours later, and I requested that they also perform a more detailed analysis on the CK / CPK (Creatine Kinase or Creatine Phosphokinase) levels; you can test the isoenzymes to then bifurcate where the inflamation was focused most:
CK-MB = Cardiac / Heart
CK-BB = Cranial / Brain
CK-MM = Skeletal / Muscles
I came back 48 hours later to find out they had also tested my previous samples for Troponin 1, which determines cardiac inflamation (…and if you are in danger of having a heart attack or already had a hear attack).
Turns out my Troponin was .09 after the first test, and .10 after the second. We retested again yesterday and discovered it had increased to .12 (…I'm less informed on this subject, but I understand they believe you've had a heart attack when you're levels reach .3 or greater, although I've heard alternate numbers as high as 1.0).
They put me on a steroid yesterday to decrease the heart inflamation (and any potential long term danger). I am scheduled to go back tomorrow, 48 hours later, for an echocardiogram and another round of blood tests.
I'm still waiting for the updated CK tests, bifurcating the 3 areasI, but Troponin is the best gauge for heart damage so the CK is not as relevant / important in this case.
This has proved serious enough that they are removing me from the study, and unblinding me in the process to determine what drugs I have been given.
It appears the culpret is likely ipilimumab, but that is not official yet. I should know more by tomorrow.
No questions at this point (unless anyone else has experienced something similar). This post was more about sharing information for future patients who might experience similar side effects and stumble across this post.
To be clear, I feel great physically… no chest pains, no shortness of breath, no numbness, no stomach issues.
It's quite frustrating, but what are you going to do. I am now looking at petitioning my insurance company to give me Keytruda or Opdivo (currently "only" stage IIIC, so only approved for Ipi).
Anyway… thanks all. I hope this might benefit someone in the future.
Aaron
41 year old male, stage IIIc, diagnosed May 2017
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