Day 28 – Cycle 2

James has made it through his first cycle! Cycle 2 will also last 28 days. At the end of this cycle he will have a CT Scan to see if this is showing any sign of working. When he comes for his scan the first week of November, his labs will also include his tumor markers, specifically the CA19-9, which was high when last checked. 

Today’s labs were all good, except his CPK. This is the test that monitors whether his muscles are being attacked. You may recall that two weeks ago, his CPK doubled. Today, the number remains the same; however, they would have expected it to decrease. Of course, James has to be different. 

However, it is not high enough to change the dosage of his cobimetinib (chemo)….yet.  If it remains high next time, they may need to adjust the chemo dosage. In the meantime, we will monitor his creatine intake and keep our fingers crossed for next time. Luckily, he does not have signs of muscle breakdown, such as pain, so that’s a plus. 

Oh, his echocardiogram and his ophthalmology appointment were both good too. So far no damage to his heart or his eyes. 

This was his off week from chemo so he has felt really good. Minimal fatigue and a healthy appetite. He gained a pound this past two weeks, which would not be a surprise if you saw his dinner and dessert the other night. 

They are starting to get results from others but can’t share them because it’s a trial and I have yet to have anyone respond to me who is on this trial to see how they are feeling, etc… 

So here he is… day 28, infusion 3, the beginning of cycle 2. 

Of course, I have specific prayer requests… (thank you for humoring me) 

1) James really needs this CPK number to decrease. If it decreases, he can continue on the current dosage of chemo, which is recommended for this trial. So pray for some muscle sparing the next two weeks and going forward. 

2) That his minimal rash goes away. You wouldn’t notice it but he can feel it. 

3) I know it is 28 days away, but that his tumor markers decrease and his scan remains stable or shows a change (preferably reduction in tumor size not increase) 

4) Finally, prayers for the other 19 people on this trial and that it is working for them. It would be lovely if they all had good results so this could become an active, reasonable treatment for PMP patients. Maybe then, James could get it at home, as traveling here takes it toll on all of us. 

As always, thank you for your support! 🎗

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