--- In [email protected], "pennyam1" <[EMAIL PROTECTED]> wrote: > Have any of you had the experience where you began on 400 mg then 600 > mg gleevec and not had them work and then been put on 800 mg and had > that finally put you in remission? My son was on 400mg for 2 years > and all of a sudden his tests weren't good so a couple of months ago > they jumped him to 600 mg. and his PCR just came back at 14% so they > are increasing him to 800mg. I am just wondering if this might do some > good or if we need to be worried and looking into something else, like > BMT. I will appreciate any help or info you care to share. Thanks, > Penny M.
Hi Penny, I fall right into that catagory you are talking about. Here is a posting I put out back in early 2003............ Hello there fellow CML'ers, I have not posted in a very long time (Post 45065 & 45197 back in 2001, when I found out I was in the advanced stage of the disease) but I have an amazing story to share with you. First a quick history review, I was diagnosed in Feb 1999, with a white blood count of 380,000. A BMA confirmed I had Leukemia. I was hospitalized for over a week and took too many drugs to remember to have my counts brought down. The Doctor's told me that my life expectancy would be 4-7 years and the best option I had was a bone marrow transplant from someone in my immediate family. Everyone in the family was tested but no one was a match. My next option was interferon. I went on a study comparing PEG Interferon Vs regular Interferon. We tried different dosages with a mixture of Hydroxeria to keep the counts down but my platelets would continually crash. I was told I would have to have a splenectomy to keep the platelets from crashing. In October of `99 I had my spleen removed. When my BMA's were showing that the Interferon was having no effect I was remove from the study and classified as a non-responder. (May 2000) Soon afterwards I was placed on the Interferon + ARA-C combo. Although this combo kept my counts stable I still had no cytogenetic response and in March of 2001 I once again was classified as a non- responder. This made me eligible for the Gleevec study. Yahoo, I was ecstatic! I started at 400mg a day and my counts were immediately under control. Quality of life had improved greatly. I was feeling better than I had felt in a long time. Six months later my Bone marrow test showed devastating results. The results showed that I had advanced to the accelerated stage with a complex rearrangement of chromosomes 12 & 13. My medication was increased to 600mg a day and after three months in addition to the abnormalities I also developed a deletion of chromosome 9. Things seem to go from bad to worse and I decided to go see a CML specialist at OHSU. I was referred to Dr Mauro (What a nice guy) and I had my first appointment on March 5th 2002. After reviewing my case he mentioned that the next 12 months were critical and that we would have to try different things every three months until we found something that worked. He was very optimistic and I remember leaving Portland feeling like I was in good hands. The first step was to increase the dosage to 800mg a day. We would do that for a period of 6 weeks (I was having a BMA 6 weeks from then) and if that didn't work we would have to try something else (Gleevec + ARA-C, Arsenic etc) After the six-week period my pH dropped from 78% to 37%. I still had the rearrangement of chromosomes 12 & 13 but the deletion of chromosome 9 was gone. I sent the results to Dr Mauro and he suggested I stay on Gleevec at 800mg a day. My next BMA showed a decrease in pH from 37% to 11% with no abnormalities. Back to the chronic stage! (Yahoo!) In August 2002 I was back in Portland to see Dr. Mauro and he said that although we still had to be vigilant, it seemed to be working and I should stay on 800 mg a day. Three months later my pH decreased from 11% to 5%. I hadn't reached zero but Dr Mauro agreed it was time to celebrate. Last week I received my latest BMA and the results show 0% phillies. (Yahoo!!) As if this story weren't amazing enough in itself, there's more, When I first had my visit with Dr Mauro I asked him about the possibility of having children while on Gleevec. (My wife and I had been trying for 7 years before I was diagnosed to no avail.) He explained in detail why there should not be an issue for us to start trying again. (Something other Doctors told us we shouldn't do). On December 28th 2002, my wife gave birth to our son Mathew. A beautiful 7 pound 7-ounce baby boy! We picked the name Mathew for it's meaning " Gift of God" which he truly is. We are truly blessed! Moral of the story, never give up, you never know what tomorrow will bring. Louis Nault Montreal, Quebec, Canada New! Sign up for local CML support group meetings in your local community at http://cml.meetup.com Apply for Commercial Real Estate loans online and submit your deal to dozens of hungry lenders in just minutes. Loan programs for all types of business and commercial real estate. 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