Thanks Beth! Time for another update. Based on my PCR that was negative for CML in December, and my looming CLL, I was taken off Gleevec, and started Imbruvica for my CLL, with the hope that the CML would remain dormant. There have been two slip-ups since then. The Imbruvica triggered a heart problem, an atrial fibrillation in February. At the end of a week in hos[pital, I was given one of those treatments with the electric paddles and fortunately immediately went back into a good rhythm. Arriving home, I started a recovery process in which I am still weaker than I was, but a bit better every day.
Then it was time for a new PCR. My old nemesis, the Philadelphia chromosome, was back (that was quick!). So now I am back on Gleevec. My Imbruvica has to be on a 1/3 basis, since both drugs are Bruton's Tyrosine Kinase inhibitors, and both use the CYP3A4 pathway. It has only been since December that I was off Gleevec, but my heartburn reminds me of the main downside I had from it. Still, I have faith it can keep the CML at bay. Anyway, as I said, I'm better every day, and besides, spring has finally come to northern Michigan. David On Wednesday, December 17, 2014 at 12:35:08 PM UTC-5, Beth wrote: > > 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] <javascript:>> > To: cmlhope <[email protected] <javascript:>> > Cc: icandoallttc <[email protected] <javascript:>> > 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] <javascript:> > To unsubscribe from this group, send email to > [email protected] <javascript:> > 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] <javascript:>. > 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.
