It was my next-to-last flavopiridol (Alvocidib) treatment last Wednesday. I did probably the best I've done to date with the side effects.
I've been having nausea with every treatment starting mid-way through the eight-month treatment. This time was a little different. I started to feel queasy toward the end of the treatment. I was very late in getting the bags of the chemo; they were busy at UCSD and short-handed. So it was late in finishing up. My nurse Dan (who is great) took over when he got there (I think it was his late day or something; he did stay late).
But about an hour before I was released I started thinking I was going to throw up. Nothing happened. But I've noticed I've gotten some phlegm that starts going during the treatment. Anyway, I did finish the treatment without throwing up. Usually I make it to the motel before I throw up (if I do; it's about 50-50 that I do).
This time, I was 'unplugged' and going out the door when the nausea hit. I made it to the restroom at the Moores cancer center, but then I threw up. It's only one episode of multiple heaves (sorry for the grossness). Once I've thrown up, it's over for good. So I can't complain too much. And, to be honest, if I try to maintain, I just am nauseated for a longer period of time. So, just be done with it!
Once I got to the hotel, I was OK. I did have the diarrhea, but it wasn't too bad this time for some reason.
Fasting: I do fast the day of treatment. There is no reason to eat something, just to have it come up later. I also don't eat anything Thursday morning or afternoon. Believe me, I don't want to eat, so it's easy to fast.
Results look OK but I'm still dealing with low neutrophils, as a direct result of FCR. I wish I'd never done FCR.
Case report: regression of MGUS with long-term use of curcumin!
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I wonder if these case reports will ever catch the eye of our MM
organisations, which, unfortunately, are so heavily sponsored by big
Pharma…Doubtful… 😕 ...
2 weeks ago
3 comments:
Barry, you say you regret starting FCR because of neutopenia. What is the alternate for a fellow CLL-er looking at starting this regimen very soon? I worry about neutropenia also, but this is the "course of treatment" from my onc. Thanks for your advice. I have learned a great deal from viewing your blog. (I appreciate the way you tell it like it is - with all the crummy details!)
Rituximab and Revlimid. R&R is a good treatment. I've obviously been in frequent touch with the folks at UCSD, and I've spoken about what they are doing there for CLL patients.
I was very keen on high dose methylprednisolone plus rituximab. I had that treatment in 2006, and had a two-year remission out of it. About 1/3 of the patients have CRs from it, and some of those have CLL disappear completely.
I happen to know of one such case, and I think I know of another. As far as I know, both of these patients are in molecular remission, with no evidence of CLL anywhere, have normal blood numbers, and their over-all immune system is improving or even back to normal.
It's as though they never had CLL in the first place! One can never say 'cured' with CLL, but these cases look pretty good.
However, the last time I asked, UCSD is using R&R more and more. Apparently this is a gentler treatment (that's my guess, having gone through HDMP+R myself). And results have been apparently very good.
FCR does not cure. It increases the risk of Richter's transformation, with a six-month median survival. It also increases the risk of myelodysplastic syndrome (MDS), a little discussed side effect of fludarabine-containing chemotherapy.
I'd really reserve FCR until you run out of other options.
I regret ever doing it. My blood counts have never recovered from it, and I'm on Neupogen permanently, now. Terrible.
Also, I'd recommend that everyone see a CLL expert before starting treatment. Even if insurance won't cover it, a $500 fee from one of the CLL expert docs (find them at http://cll.ucsd.edu/ or the blood cancer research, or at the acor.org mail site).
You don't have to see them regularly, but once or twice in the course of your disease is money well spent.
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