I live in Adelaide, South Australia. I have never been in remission but my doctor said they only class you as being in remission after 2 years at 0. This is because you may still have a very small amount of Leukaemia still in your blood & the tests are not sensitive enough to detect these small amounts. They have worked out that it takes approx. 2 yrs for you to get rid of the last bit of leukaemia. He also was trialling patients that had a remission (2yrs at 0 or more) & taking them off Gleevec. I am not sure of the results but I do know some patients who started on the trial & they got scared so they started it again. Maybe you could check if any doctors in your area have trialled this possibility.
>From: [EMAIL PROTECTED] >Reply-To: [email protected] >To: [email protected] >Subject: [CMLHope] Re: Bone growth delayed in 12 yr. old >Date: Wed, 06 Sep 2006 05:05:22 +0000 > >Fran, > My Onc. wont let me lower my dosage either and I have been at zero >twice. It is maddening. He told me I would have to be on medication for the >rest of my life no matter how long I was in remission or at 0. I just dont >understand that. I asked him once wasnt it like other cancers that if you >stayed cancer free for five years you were cured and he said NO. It just >still seems unreal that at some point I wont be able to quit taking >medication.I feel for Jonathan my 16 year old is barely an inch taller >then me, I am five five and for sveral years we didnt think he would get >that tall. He would get sooo upset because the other kids teased him about >being small. So I understand and hope that things will get easier for >Jonathan......just remind him that good things come in small packages! >Hugs, >Katy > >-- >xanga.com/katybug45 > >-------------- Original message -------------- >From: "franw/hope" <[EMAIL PROTECTED]> > > > > > Hi everyone, > > I was so thankful for the news about the findings of folks phosphorous > > levels decreasing and deficient bone growth that it threw up a red flag > > for our 12 year old that has not grown in 3 yrs. > > Jonathan was dx 10/03 and also has had a femur head had deteriorate > > and had it put back into place with hardware to grow back rounded. This > > was in 3/05. He is having this hardware removed a year and 5 months > > later (sept 7th). The femur had grown back. We are very Thankful. > > Although doc odered a bone density test. We rec'd the results today. > > Jonathan is 3 years delayed in his bone growth and is also osteopedic. > > > > So off to a Endocrinologist the 20th. With hopes that there is some > > help. > > Jonathan has wondered around his friends why he is still the size of a > > 9 yr old. It breaks our hearts to see his face of discouragement. > > Good news though on top of this. Jonathan's PCR came back > > 3/100,000. That is the lowest it has ever been. We have asked about > > lowering his dosage..but the answer still remains no. > > > > God Bless each one of you... > > fran > > son: Jonathan > > age 12 > > dx 10/03 600mg > > > > > > > > > --~--~---------~--~----~------------~-------~--~----~ [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~----------~----~----~----~------~----~------~--~---
