Guest guest Posted January 29, 2011 Report Share Posted January 29, 2011 Fludarabine combined with cyclophosphamide will cause further mutations that can lead to MDS, and perhaps ultimately to AML. This is a tough disease to treat. Much more research and drugs are needed. A bone marrow biopsy that looks for chromosomal abnormalities specific for MDS will give you the answer. Even though I recommend not using FCR until their is no other option, the risk of MDS after FCR is low. CLL Transformation to MDS or something else? Posted by: " laneyrae " jrwolleat@... laneyrae Thu Jan 27, 2011 1:13 pm (PST) I have never posted but now am searching for input on my changing CLL. I am a 59 year old female; dx in 2000 with 6q deletion; tx 6 cycles FCR 2004, CR for 3 1/2 yrs, FISH done in 12/2007 revealed 11q and 13q deletions; pursued SCT summer/2008 & found 3 MatchedUnrelatedDon ors, decided to wait after evaluating CLL expert opinions; developed ITP 2010, tx HDMP for 5 months(100 mg/day 8/1/2010, tapered to 0 mg 12/30/2010), platelets rose above 100k mid tx but came down with dosage decrease, experienced many negative steroid side effects; IVIG for immune system monthly 8/2010 - 1/2011. In the 4 weeks since completing HDMP for ITP on 12/30/2010, my neutrophils (2.6k to 1.1k) and lymphocytes (35k to 17k) have declined significantly in addition to the platelets (53k to 37k). The counts on 12/30/2010 were similar to my counts when I started HDMP. I had a fever, body aches, fatigue last week which the doctors thought was a " flu-like " viral infection but only lasted 2 days and ended when I had a drenching night sweat. I now wonder if it was something else. I was given Rituxan for the ITP on 1/24/2011. Nplate had been considered but not used because of anemia (HGB 10.8) (RBC 3.0). I was taken off the prophylactic Bactrim & Valacyclovir I had been taking during HDMP and a BMB was mentioned but not yet done. I go back 1/31/2011 to check bloodwork and see where we go from here. Sorry for the long post. I am concerned about a possible transformation of my CLL to MDS or something else. I haven't had neutrophils this low since FCR & never thought I would be concerned about decreasing lymphs. I would appreciate any input that can be offered to me about my current situation and what to do next. I have a CLL specialist and a local oncologist but this list has opened my eyes to many things that I would never know to bring up or question. Jillayn Wolleat Quote Link to comment Share on other sites More sharing options...
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