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Latest Update

Posted By
1/11/2020 5:27pm
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Replies: 4

Haven’t posted for a while but thought I would give an update after a challenging few weeks!
I started the Spartazimulab / Ribociclib Trial in Mid December and for a week it had been ok. The trial is a PD1 combined with a targeted therapy taken by tablet. The tablet sucks and makes me feel pretty rough for 2 hours after taking it everyday.
A week into trial I had rode a mechanical bull at my works Xmas do and did quite well but really suffered with pulled muscles the next day. Couple of days later had routine blood tests that showed grade IV levels of CK (indication of muscle damage) team stopped my treatment as concerned my immune system was attacking my muscles. No steroids and fortunately it started to come down on Xmas eve after a hospital admission. Continued to drop over New Year and yesterday I saw a neurologist to get a definitive diagnosis. After all the stress of thinking I was being kicked off the trial the verdict was elevated levels due to extreme exercise and nothing to do with treatment!! Very relieved and now restart again on Monday.
Hoping everyone has a better 2020

Bubbles - (1/11/2020 - 5:40pm)

Glad things are looking up, Mark! But I think you better give this a listen:

"Mommas don't let your babies grow up to be cowboys!!!" Bahaha! All's well that ends well, right? Glad you had a good Christmas blow out, but you might need to ride your recliner for just a bit!

Just teasing! Hang tough. Bull riding, melanoma and clinical trial drugs ain't for sissies! Celeste

jbronicki - (1/11/2020 - 8:24pm)

Hey Mark, So glad you are still on the trial and so glad they took the reasonable course of tracking the CK value over time instead of using one value. You really took the Bull by the Horns, HA HA! My husband had a similar issue where they were concerned about his potassium levels after one of his blood draws at MD Anderson but he had just gotten hit severely by a softball (huge and deep bruise) before the blood test and muscle injury does cause several of these lab values to rise!

If you ever come over the pond to Texas, you can do some real bull riding :). Just glad you are in trial and your worry about being kicked off is gone. Again, you do more than most people not being treated for a serious disease, amazing!
Hugs and hoping 2020 is nothing but good news for you, we think of you often.

Jackie <3

Mark_DC - (1/12/2020 - 8:09pm)

Hi Mark,
Its so far back now, but I think something like this happened to me once. It was three years ago, after surgery I was put onto adjuvant ipi in a trial (I was unlucky and didnt make the pembro arm). I did one ipi fine, then some diarrhea or something they paused me, then I was getting my life fixed so I went to the gym and hired a trainer - and then I think my readings went up (dont know if it was CK) and was delayed again and then diarrhea worsened or something. Anyway, no one ever tells you not to exercise or stuff, or rather not to overdo it.

I think I was told not to exercise (!) until the readings came down, or limit my cycle rides dont overdo it. THat was really depressing. I felt like an idiot as I may have ruined my readings, plus I thought it would be a good idea to be more fit (turn into Celeste!) and they were telling me not to do this. I was probably off red wine too! ALthough it seemed like an eternity i was able to walk and cycle more over time, push it a little, and go onto the next treatment, pembro, after progression.

Sorry, its just that I empathize with you, you were unlucky. I hope the muscle inflammation goes down and then you will be OK again to go back on treatment.

Good luck Mark

PS are the names of your drugs for real???? The first one is like something out of Private Eye! :-)

MarkR - (1/14/2020 - 2:32pm)

Thanks all so frustrating to have stopped for something so silly but really grateful they have got me back on the trial that I restarted today and good to hear I may not be alone.

Jackie - I would love to visit Texas as it’s probably the last ‘big state’ that I haven’t visited yet; although perhaps I should stick with some horses!!