Guest guest Posted March 12, 2005 Report Share Posted March 12, 2005 Hi all, Found my way here.... thank you for the direction and thank you Amy for setting this group up - glad to see familiar names on here and also some new ones. Briefly, my husband, , was diagnosed with cml in May 2003 with a wbc of 450,000 and platelets of 900,000. Leukapheresis, then hydrea, then a fight to get Glivec (UK sp)as our health people had not approved it then for newly diagnosed..... Glivec August 2003 (we won, but that is a story in itself). BMB Nov. 03 - PH+ down to 60% from 100% = what joy! BMB Feb. 04 - PH+ up to 75%, increase Glivec to 600mgd BMB May 04 - PH+ up to 100% = what panic! - Transplant advised as only course of action left... switched doctors ...increased Glivec to 800mgd and mutation testing carried out. Blood counts start to rise - consider BMS Phase 1 Trial in Houston, but did not get the second wbc of 15,000 or more to qualify. Discovered Rich had the M244V P Loop mutation - increase Glivec to 1000mgd. Blood counts normalised for a month, then platelets started to increase. Stopped Glivec September 2004 and back on to Hydrea - awaiting BMS Phase 2 Trial starting in London and, at present, juggling Hydrea dose in line with weekly blood counts..... Mutation test repeated in December 2004, M244V still present. Awaiting mutation test result from January test. Just heard yesterday that there are still " ethics committee " problems with BMS Trial wording, so we may be off to France or Germany if they don't resolve these soon. Next appointment in London on 30 March. Did I say " briefly " .... sorry..... is one of a minority who have a P loop mutation which is resistant to Glivec. We are sure BMS will do the job for him. Best to all Annette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2011 Report Share Posted February 25, 2011 Hi , Yours is a story we all love hearing. It sounds like you've got this thing under control and will no doubt conquer it in no time...I'd say mentally you already have. Wonderful of you to willingly share all the wonderful things you're doing and all of it is so easy for the layman to understand. You prove one doesn't have to be a doctor or scientist to help and heal yourself or that it is not always necessary to use chemo, radiation or radical surgery on cancers. Your testimonial is such a great encouragement and shows cancer need not be a death sentence. Thank you so much for sharing. Sandy Quote Link to comment Share on other sites More sharing options...
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