I took my first dose of CAL-101 on Wednesday at 1:15 pm. I then had my rituximab infusion, which I covered in my previous post.
I didn't write yesterday about my surprising results from CAL-101. Thursday morning, when I woke up, I noticed my abdomen seemed noticeably smaller. Hmmm, I thought. This seems very sudden of a response. Dr. Coutre told me that I would experience results quickly, within the first week, but in 18 hours? This seems on par with flavopiridol, which has a tremendously fast and potent kill effect, so much so that one is hospitalized to keep an eye on one's potassium level, so it doesn't get out of hand and destroy one's kidneys (one of the first patients on flavopiridol (Alvocidib) died from acute renal failure in Dr. Byrd's study).
I'm not sure what is going on in my potassium level, but I am staying well hydrated just to be on the safe side. And I've not heard of anyone dying so far on a CAL-101 study, so that's reassuring. (However, one must realize this is a clinical trial, and sometimes significant side effects are found long after the drug has been used in patients.)
This morning, my gut is smaller still. Amazing. I would never have believed it. It's like magic. It's like I've had liposuction on my nodes.
I must say that my other enlarged nodes are not following quite the same path. Perhaps it works on massive nodes more than slightly enlarged nodes.
Of course, time will tell and I know this is not a cure. But I wonder if CAL-101 could be used in emergency situations when lymph nodes get out of control and start impinging upon organs.
I have recovered pretty much from the unpleasantness of Wednesday's rituximab infusion. I am constipated, though, something that rituximab does to me, that they don't tell you about. (In my first go-around with rituximab, I was so constipated I thought I might be plugged up forever. It was terrible. I used a stool softener this time, though obviously not quite enough.)
Well, I must say that CAL-101 works unlike what I expected. And it's illustrated that much of my gut was enlarged lymph nodes, though they have never gotten as bad as they were before flavopiridol. Flavopiridol was what I needed when I took it a year and a half ago. It was more troublesome than CAL-101 is so far (we will see what the future brings), but I was pretty bad off. And the fact that Dr. Kipps had that trial was fantastic.
Scotland
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I know, I know, we’ve practically been all over Scotland by now. So why are
we going there AGAIN? Simple: we just LOVE Scotland!!! Can’t wait to leave.
It ...
3 months ago
1 comment:
Congratulations! CAL-101 seems almost too good to be true when it comes to node reduction, but many patients are reporting excellent results. All that and no bad side effects! I hope the rest of the week brings you more good news.
Cheers,
David
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