On 10/19/2008 Jaxxy wrote:
My husband was diagnosed with WM Stage IV in January 2008. They started him on a regime of CVP for 6 sessions. There were no discernable results so in April they switched to Rituximab and Fludarabine. He's had some amazing results since and continues to make progress. Our concern is he is had more and more severe reactions tot he Ritux with the last session stopped at 3/4 of the way through because he was having difficulty breathing, he had a rash over 70% of his body and experienced swelling. Each time he has been on the Ritux it's been a different sort of reaction but a reaction nonetheless. They have now discontinued the Ritux and he has two more sessions with the Fludarabine (oral). My concern is that they were intending to continue a maintenance treatment with the Ritux every 3 months but will not do so because of the reactions. I have been combing the websites looking for an alternative to the Ritux but as yet, I've found nothing. I have of course found the transplant option and the blood cleaning options and wonder if anyone can add anything or has anyone out there experienced the same kind of reaction and if so, what they are doing now? Any advice would be most welcome.
While I don't have a definitive answer to your posting, I can say that I may be able to place you in direct contact with other WM'ers who have had similar issues and gain insight from their experiences. I'm the online discussion list manager for the IWMF (International Waldenstrom's Macroglobulinemia Foundation), and would be more than happy to post your message on our list, or provide you with instructions as to how you can join our list and send the message yourself (so that you get responses send directly to you). You can reach me at
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