Quote:
Originally Posted by celebrations
What' s about the side-effects of Campath, do you have any, or do you tolerate well. How long will your physician go on with the therapy, because there is not yet a real success, as far as I understand.
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Hi Bergit!
The
trial of Campath that I am enrolled in involves an intravenous infusion of 10mg per day over ten days (preceded by a 1mg test infusion). I was hospitalized for that period (though, frankly, the last week could have been outpatient). The infusion reaction involves fever and shakes for the first couple of doses, then no side effects.
In the months after taking the drug there have been no severe side effects. All of my blood counts were depressed for a couple of months before beginning to rise again. My lymphocytes are still below normal, so I take Valtrex (Valacyclovir) to prevent viral infection and a monthly inhaled dose of Pentamidine to prevent PCP pneumonia. When my neutrophil count was below 500, I also took Ciprofloxacin to prevent bacterial and fungal infection. But my ANC is above 1000 now, so I no longer need that antibiotic.
Unless there is some significant worsening of my blood counts or transfusion interval, I will wait until November to see if the Campath works. That will be nearly 12 months.
There is
another trial of Campath in the US -- at MD Anderson in Houston -- that involves the same dose I had (10mg per day over ten days) but repeats this every 28 days for up to six months.
Quote:
Originally Posted by celebrations
In my archive I had some data that +8s responded in an american trial with Revlimid (30 patients) with 11% [alltogether, means all non-5qs, had a responding rate of approx. 25%]. So 11% is rather low....
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If you have a copy of that study, I would enjoy seeing it.
Quote:
Originally Posted by celebrations
Tomorrow I will catch some blood, although my HGB might not be around 8,5 yet. But I need it for QOL and travelling for two weeks. So I will have to discuss that point again (I already have several times), because transfusion regulations only want to transfuse under 8...Transfusionmanagement is always a big subject for me and other MDS-patients. What experiences do you have about that?
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HGB under 8.0 seems to be the rule of thumb at my local hospital. But my hematologist is generally quite willing to transfuse at higher than that (8.3 or 8.5) if I am symptomatic (feeling fatigued, heart flutters, that sort of thing). The folks at the National Institutes of Health have told me they use 8.0 as a general guideline for younger patients, but use 9.0 for patients over 60.
So far, my health insurance company has never questioned any of my transfusion requirements.
Good luck with your upcoming BMB!
Take care!
Greg