Steph, I too am from Melbourne, Australia, diagnosed November 2005, Glivec of 800mg immediately. Aged 44.
My wbc was 370,000 on diagnosis, soaring to 370,000 in two weeks. This week I have achieved haemotological remission, normal blood counts. No real side effects but am pleased that I was put straight on 800mg. Everyone is different. I am now monitoring my ph level. Jackie Jackie PetropoulosJackie Petropoulos ----- Original Message ----- From: "steph" <[EMAIL PROTECTED]> To: <CML@yahoogroups.com> Sent: Saturday, January 07, 2006 9:04 PM Subject: [CML] Re: Gleevec Clinical Trial (400mg VS 800mg) > Hi David, > I was diagnosed Sept05 with CML - age 36 - and put into clinical > trial (400vs 800mg) in Melb, Australia immediately. > > This looks like the same trial you are thinking about taking part > in. How they chose what mg I was given was random and done via > computer. To be honest, I was really relieved to be randomised at > 400mg as I was concerned about potential side effects of 800mg. I > think perhaps my decision would have been different if I had been > randomised at 800mg and not reacted well to it. I was always given > the choice by the team, of not being part of the trial and I still > have that choice which is a good thing. I have reacted well to 400mg > (ie WBC down from 96,000 at dx to 8000 in three months) and would > not be prepared to go to the higher dose. While I am on 400 mg I am > happy for my results to be used in a trial. > > Personally, I didn't have any particular issue with being part of > the trial. I saw the reason I had the opportunity to take glivec was > because people were part of a trial in the past. My family, however, > were not at all happy with my decision so that caused a bit of > tension for awhile. > > Steph > > > > > > > --- In CML@yahoogroups.com, "da06761" <[EMAIL PROTECTED]> wrote: >> >> Hi, >> >> My name is David, I have been a silent member for 4 years now and > to >> start I want to thank everyone for their posts. They have helped > me >> in a large way. >> >> My history is as follows: >> >> Name: Dave Blackier >> dx age: 28 >> dx: Dec 17th, 2001 >> Gleevec: Since January 2002 >> Current Dose: 400mg >> >> I started Gleevec at 600mg which caused my white blood cell count > to >> drop. I was reduced to 300mg and gradually increase until I > reached >> 600mg again. Once at 600mg I quickly achieved CCR followed by MMR. > I >> was dropped to 400mg and have been there for 1.5 years now. >> >> >> I have been asked to take part in a Novartis clinical trial where >> they will evaluating the effects of increasing the Gleevec dosage > to >> 800mg on individuals that are currently having a molecular > response >> at 400mg. The purpose of the trial is to understand whether >> increasing Gleevec dosage has a positive effect on people who have >> had little luck at 400mg. I want to help, but where I have been >> extremely sensitive to Gleevec past and I'm afraid of the side >> effects of 800mg. I discussed this with my Doctor and he approved > of >> my participation. Where my Doctor is the principal investigator, > I >> would welcome everyone's feedback or opinions! >> >> Sorry for the length of the post. >> >> >> Cheers! >> Dave >> > > > > > > > > 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. Apply anytime at > http://realestatezoo.com > > CML (Chronic Myelogenous Leukemia Support List) > --------------------------------- > Part Of CMLHope.Com > An International Community Of CML Patients > For more information: http://cmlhope.com > > Post Message: cml@yahoogroups.com > Subscribe: [EMAIL PROTECTED] > Unsubscribe: [EMAIL PROTECTED] > Change To No Mail/Web: [EMAIL PROTECTED] > Change To Digest: [EMAIL PROTECTED] > Change To Email: [EMAIL PROTECTED] > List Help: [EMAIL PROTECTED] > CML Group Web Site http://groups.yahoo.com/group/CML > > Yahoo! Groups Links > > > > > > > ------------------------ Yahoo! Groups Sponsor --------------------~--> AIDS has a woman's face. Help women to protect themselves. http://us.click.yahoo.com/VHwV5B/TREMAA/xGEGAA/8zSolB/TM --------------------------------------------------------------------~-> 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. Apply anytime at http://realestatezoo.com CML (Chronic Myelogenous Leukemia Support List) --------------------------------- Part Of CMLHope.Com An International Community Of CML Patients For more information: http://cmlhope.com Post Message: cml@yahoogroups.com Subscribe: [EMAIL PROTECTED] Unsubscribe: [EMAIL PROTECTED] Change To No Mail/Web: [EMAIL PROTECTED] Change To Digest: [EMAIL PROTECTED] Change To Email: [EMAIL PROTECTED] List Help: [EMAIL PROTECTED] CML Group Web Site http://groups.yahoo.com/group/CML Yahoo! Groups Links <*> To visit your group on the web, go to: http://groups.yahoo.com/group/CML/ <*> To unsubscribe from this group, send an email to: [EMAIL PROTECTED] <*> Your use of Yahoo! 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