Hi John, I'm currently on 400mg of Gleevec and doing well. I started on 800mg but had problems with crashing counts and a huge gout attack (probably triggered by the high tumor load and edema). I'm likely at CCR or better, but I won't know for sure until my next BMB or FISH. I could probably increase Gleevec to 600mg, but so far I'm happy with my response at 400mg. I've written a bit about the high dose controversy in newly diagnosed, but I'll recap it again here. There is an ongoing controversy amongst Heme/Oncs regarding the starting dose for newly diagnosed. The controversy started when Dr. Kantarjian published an article in Blood early last year that showed improved results with treating patients at 800mg of Gleevec vis-a-vis historical norms at 400mgs. His results showed faster and improved responses (more patients achieving higher log reductions more quickly) as well as a lower frequency of clonal evolution that might lead to Gleevec resistance. Similar data has been reported by other researchers recently at ASH (the annual American Society of Hematologists conference). What makes Dr. Kantarjian's data controversial however is that newly diagnosed patients fare better on Gleevec than the historical norm of patients which included late chronic phase patients (patients who are not newly diagnosed) who were previously treated with interferon. This is another competing explanation for the improved responses seen by Dr. Kantarjian. There are two fully randomized trials currently underway that should resolve this controversy soon. As I've mentioned before, it wouldn't surprise me that 400mg is shown to be slightly suboptimal for some people and that a higher dose like 500 or 600mg ends up striking the best balance between improved response and side effects. I don't know if the randomized trials will include 600mg results. If not, it wouldn't surprise me if the controversy will shift to 600mg vs 800mg in newly diagnosed. After being on Gleevec for going on 7 months now and having seen the side effects firsthand, I personally am not a big fan of 800mg unless it's prescribed to overcome resistance. If you do go this route make sure your Heme/Onc monitors you closely for low blood counts. My platelets went quickly from 750,000 to 47,000 for example (and would likely have gone lower if I didn't go down to 400mg). Even Dr. Kantarjian's article showed that 50% of newly diagnosed patients treated at 800mg had Thrombocytopenia (low platelets). Low counts can be treated, but the point is that the Hematologist has to be on the ball and anticipate these problems if they go the high dose route. I was impressed that your doctors hospitalized you and you were given daily leukapheresis to debulk your cell counts. My debulking treatment was solely at home from Hydrea and it took about 3 weeks to get my counts under control before starting Gleevec. This process is tough on the body. I drank over a gallon of fluids a day for example and even then had a severe gout attack. It sounds as though they were able to get you on Gleevec right away which is a good thing. Did you notice a difference in how you felt after the debulking? I went from being hot all the time and feeling bloated from my spleen to feeling skinny and cold all the time. I liked being skinny, but it didn't last long as I quickly gained about 20 lbs after starting Gleevec. I recently posted about how I came to be diagnosed and you can find it here (http://health.groups.yahoo.com/group/CML/message/90916). I was dx'ed with "only" 1.5% blasts. As I mentioned before (and reinforced with the info about your spleen and blasts) that you're likely in a higher Sokal risk group for newly diagnosed chronic phase patients so it wouldn't surprise me if you end up on a higher dose of Gleevec at least to start and are tested more frequently. I was also told that I was lucky that I didn't suffer a heart attack or stroke with my counts. I did have noticeable bruising and a bloody nose that was a problem on and off for over a week. Luckily no vision problems. If you're down to 60% PH+ from your BMB (I think you meant to say ph+ rather than blasts) you're showing a great initial response to Gleevec. Some doctors (including Dr. Timothy Hughes) feel that getting a major cytogenetic response at 3 months is one of the best prognosticators and it sounds like you are on your way. I hope you do well on Gleevec my friend and that your vision returns to normal. Please keep in touch and keep us apprised of your recovery. All the best, Mark --- In [email protected], John Thompson <[EMAIL PROTECTED]> wrote: > Hi Mark, Tracey, > > Sorry for the slow response. I was out of town for the holidays. > > Well, way back in September, I was in the hospital for about a week and a half. After a myriad of tests, I got daily leukapheresis treatments along with 5 grams of hydrea per day. After my fourth treatment, my WBC was down in the 20's and then it only took me a few weeks to get it down into the 6-7 range. so I think I was pretty lucky. > > Yes, I had a huge spleen for the longest time, but it is back down to normal size now. I was looking through my notes to find a measurement, and at dx it was 21 CM. The Dr notes from the CT scan showed a lot more interest in a couple hemorrhages in my posterior temporal lobe. I'm really lucky to be here, whew! All of my early medical records have Acute Leukemia all over them, but the final diagnosis was CML, Chronic Phase w/ 5% blasts. A single clone was identified with the PH, 9,22 translocation and mild reticulin fibrosis. > > My last BMB showed 60% of the 20 cells examined as blasts, so things are turning around. If my eyes would get back to normal or at least close, I would be really happy. > > You had some whopping WBC counts yourself. Hope things are going well for you. I assume you are on Gleevec too? Has your Dr. bumped you up above 400mg? My doc is against it, so I'm getting a second opinion tomorrow. > > Thanks for the response and happy new year. > > John > > > --------------------------------- > Do you Yahoo!? > Dress up your holiday email, Hollywood style. Learn more. 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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