Miscellaneous Waldenstrom's information

A case history Posted Oct, 2007 (from the IWMF talklist)

I am very sad to say that my Dad, who was diagnosed with WM in 2001, passed away earlier tonight after a long, courageous battle against WM... :( He was 63.

Within the last year he had been treated with chlorambucil (Jan. 2003 thru Nov. 2006), perifosine (Jan. thru Feb. 2007 at Dana-Farber), Rituxan/Velcade (Feb. thru July 2007 at Dana-Farber), and 2 rounds of CVP-R in Worcester (9/7 and 9/28). Between August 10 (when he went to Boston for the Rituxan/Velcade end of study visit) and August 31 (when he was admitted to UMass with hgb of 4.6 and hematocrit of 12.6), he totally relapsed and spent the last 5.5 weeks in the hospital and, briefly, in rehab (for just 6 days). On Friday his blood pressure plummeted, his heart rate skyrocketed, and he was moved to ICU.

This TalkList has been a tremendous source of information for me. It is how I first learned about the Bing Center at Dana-Farber and Dr. Ghobrial and has helped me to talk with all of Dad's doctors and nurses without sounding like a total medical idiot. :)

My Dad was so brave and endured so much recently, starting with the sudden passing of my Mom on March 15, 2006, just 3 days after their 35th anniversary. I am glad he is at peace and that they will be together again.

Jeff Atlin  on Oct 26:

I did a stem cell harvest in April, 2005, which were put on ice for future use. I had been on Velcade for 55 weeks (18 cycles) ending Feb 04 (my first treatments after 4.5 years of W&W), at which time my IgM had been reduced from a high of around 7600 to 488 and Hgb from 8.0 up to around 13.0. My lymph nodes had reduced by 50-60% and spleen and liver were back to normal. A BMB done at the end of the clinical trial showed WM still present, but at a much reduced infiltration (there is no need that I can see for you to have a BMB at this time). I had clinically reached a PR. By March 05 my IgM was 1270 and Hgb around 11.5-12.0.