Sandy, My son Kevin is six and was diagnosed with CML in March. After six months on Gleevec (9/29/2008) he has achieved Complete Cytogenetic Response (CCR) and his PCR is 0.022. We're sticking with Gleevec.
You don't happen to live on Long Island, do you? Your story sounds very similar to ours: we were told Kevin would have a BMT from his 9/10 sibling match, possibly in July-September, and in the end he would be just fine. Our second opinion said no way, stay on Gleevec. We know a bio-chem professor whose PhD classmates now work in cancer centers and top hospitals around the country. She did an informal survey and found the medical community is disturbingly split on the treatment plan for pediatrics. After visiting the Seattle Cancer Center Alliance, who have done the most BMTs in the country (Fred Hutchinson Cancer Center is now part of it), and Dr. Druker in Oregon, we've decided to stay on Gleevec unless Gleevec and related drugs stop working, or there's a cure. Let's hope and pray for that! My wife Julie recently posted more details about all of this on the "Child CML Talk" page: http://www.newcmldrug.com/Children/reply.asp?ID=25073&Reply=25073 There are no simple rules for any of this, so I can't speak to your son's case. Plus I'm not a doctor, and no doctor we spoke to would make recommendations without first examining our son. In Kevin's case, a top hospital said they would do a BMT if there was a 10/10 match. Since there is none, they recommend staying on Gleevec and doing a donor search every 2-3 years (I think). Dr. Druker strongly recommends staying on Gleevec for many reasons. The fact that we're sticking with Gleevec for our six year old says it all. The most important piece of advice I can give you is to get to a doctor who believes in Gleevec, and knows how to monitor CML, and get on the correct Gleevec dosage. I've read many stories about people coming off Gleevec for a short period of time because of side effects, then going back on it. Some have reduced their dosage. Others have increased it for various reasons. In our case, Kevin was on too low a dose for months. There is something they call a "trough level test" that measures the amount of Gleevec in the blood 24 hours after the last dose. Kevin was 30% lower than recommended. We increased his dose, repeated the test weeks later, and now it's at the right level. Our first doctor was planning for a BMT and felt the trough level test was unimportant. We strongly disagreed with both of those ideas. We used to do all the research and tell our doctor what we found, and he would need to be convinced to make changes or perform tests. Now we're with a doctor who believes Gleevec is the way to go. He knows more than we do about treatment with Gleevec, which is a nice change. If you decide to stay with Gleevec, make sure you have the right doctor. I know how confused and overwhelmed we were (are?). It's a little better now. We're seven months into this. If you'd like to speak with my wife or me, let me know. Here are some links for you: Dr. Druker lead the creation of Gleevec and spoke on the TV telethon "Stand Up to Cancer" in early September 2008: http://www.youtube.com/watch?v=JIK_tL2LClw Technical 1 minute explanation of Gleevec: http://www.youtube.com/watch?v=iaK99RxEyAU&feature=related 24 seconds with no sound. BCR-ABL is the mutation that makes a white blood cell a CML cell. ATP is key to the energy cycle of the cell, and when the substrate detaches it enables cell growth and division. Gleevec blocks that process: http://www.youtube.com/watch?v=nP8-9WWp5ZQ&feature=related Really good visual with an explanation in a language from another galaxy with some words that you could swear were English: http://www.youtube.com/watch?v=QR6d2cfImRc&feature=related This transcript, 22 pages, is from a telephone education program of the LLS, with Dr. Druker (there's an MP3 audio as well). Dr. Druker explains the data available on Gleevec. I have no references to put here, but I believe the data on BMT are more risky than Gleevec: http://www.leukemia-lymphoma.org/graphics/National/EI2546BT6CMLTranscript.pdf Regards, John On Mon, Nov 3, 2008 at 11:04 AM, SandyC <[EMAIL PROTECTED]> wrote: > > Hello, > My 13 yr old son was diagnosed with CML in August. He is currently > being treated with Gleevec and responding very well. No major side > effects besides headaches, stomach pain and fatigue. We were > originally told that the only treatment option is Gleevec and BMT. We > met with another Dr and she recomends leaving him on Gleevec...no BMT. > So, now we have a major decision to make! Who is right? What is the > best treatment plan? There is very little info for pediatric CML out > there. Anyone have any opinions?? I am so confused...how could there > be such a huge difference in opinion? > Any feedback would be greatly appreciated!!! > Thanks, > Sandy > > > > --~--~---------~--~----~------------~-------~--~----~ [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 CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~----------~----~----~----~------~----~------~--~---
