Thank you, and may God bless you Beth. My day to day life is not bad. I struggle only with the unknowns, which I guess is true of all of us. I’d love to know more about your journey.
I am off to see my onc now, and tomorrow, Ibrutin. From: bkbarney via CMLHope Sent: Wednesday, December 17, 2014 12:35 PM To: [email protected] Subject: Re: [CMLHope] Dual Diagnosis: CLL/ CML Good luck to you David. It sounds so hard..glad you reconnected here....after being diagnosed and doing well for 12 years....hope the meds support you well with the CLL. happiest of holidays to you and yours. Beth. -----Original Message----- From: Richard H <[email protected]> To: cmlhope <[email protected]> Cc: icandoallttc <[email protected]> Sent: Sun, Dec 14, 2014 12:33 am Subject: Re: [CMLHope] Dual Diagnosis: CLL/ CML I could not meet the requirements. I have too many other health issues that would interfere with the results they were looking for. When I was first diagnosed they ruled me out of a BMT for the same reasons. Richard H. On Saturday, December 13, 2014 2:07:12 PM UTC-6, Icandoallttc wrote: Hi David So good to hear from you. Marty sent us a site not long ago about a study for going off Gleevec. There are certain things you must meet to be in the study. Glad you are negative. Blessings Jeanie Sent from my iPhone On Dec 13, 2014, at 12:00 PM, [email protected] wrote: Hi, Hello everyone. I have posted here long ago, when I was first diagnosed with CML, in 2003. At the time, I started on Gleevec, and immediately had a Complete Remission, via FISH. Unfortunately, I also showed signs of CLL, which was confirmed. The CLL has been on "watchful waiting" until now. Recently my counts got very negative, due to the CLL, and I went to Mayo and found I have a 17p deletion, which is quite negative. For the CLL, I will go on Ibrutinib, a targeted therapy. Since Ibrutinib is a tyrosine kinase inhibitor, I will need to stop Gleevec, at least for a while. I kind of wish my onc had been doing PCR's for a while, but at Mayo they did one and found my CML was undetectable. Can anyone point me to any studies about stopping Gleevec after long periods (in my case around 10 years) of Complete (or molecular) remission? The current plan is to check with regular PCR's for a reemergence of the BCR-ABL. Best wishes to all... David -- -- [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 --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/d/optout. -- -- [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 --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/d/optout. -- -- [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 --- You received this message because you are subscribed to a topic in the Google Groups "CMLHope" group. To unsubscribe from this topic, visit https://groups.google.com/d/topic/cmlhope/hz_PZAN5b-A/unsubscribe. To unsubscribe from this group and all its topics, send an email to [email protected]. For more options, visit https://groups.google.com/d/optout. -- -- [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 --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/d/optout.
