Guest guest Posted May 24, 2010 Report Share Posted May 24, 2010 mariettabrill <mbrill100@...> :"Fred - Do you mind sharing some other information about your treatment?"_____________________________________________________I had Bendamustine in 2002 in Germany, 6-cycles at 100mg/m2.I was given pre-meds for nausea and experienced no severe problemsor "apparent" side-effects; except that by the 4th cycle I was feelingmore "unwell" and brain-fog and extra fatigue. I was urged to completethe 6-cycles which I did.Remission lasted about 2 years, or until Jan.2005 when WBC went above 11.WBC thereafter was very slowly going up, or stable, until July-Sept.2008 whenWBC doubled and neutrophils seemed to decline to around 0.5.I convinced my hematologist here in New York to try Treanda (Bendamustine), but as Low-Dose at 35mg/Mm2 plus SQ injections of "low-dose" rituxan.After a rash appeared, the rituxan was stopped; and we bumped up the Treanda dosageto 75mg/m2 since the lymph nodes were not diminishing (although the low-dose reducedthe WBC to "normal" after 1 month).I wanted to stop the Treanda after 4 cycles because I had had experienced extremefatigue and brain-fog with the previous 6-cycles of Bendmustine---besides, there wasno further improvement reducing the Lymph nodes, and the WBC was normal & steadyeven after 1-cycle of the very low-dose. (Besides, my hematologist for personal reasons hadto take a leave of absence for 6-months and I was not under his supervision after the4th cycle).I might point out, that I've had 3 cycles of PCR this past year which had no lasting effect,and was stoppedd. I have since enrolled in Dr. Furman's clinical trials and for the past3 months have been on CAL-101.CAL-101 is easy to take and reduced the size of enlarged pelvic-abdominal nodessignificantly and other palpable nodes have diminished (but not entirely disappeared).It was a very impressive beginning.....However, WBC is now quite high at over 200k, and my HgL seems to be plummeting...perhaps due to past Bendamustine destruction of bone-marrow?, or who knows....maybe, just another kind of "displacement" of CLL from nodes to blood to marrow?I have felt weak and fatigued over the past 6-8 weeks, but for past 5 daysI feel ok despite the low HgL ......I am under watchful care of Dr. Furman and follow closely what he says! Fredrich CANTOR (NYC)male, now 65, dx 1998 CLL Quote Link to comment Share on other sites More sharing options...
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