Dear Beth, You're right: it can take a while until the two TKI's learn to play nicely together. I am so deeply indebted to Gleevec for giving me many good years. I can hardly complain if there is some static when I add a second agent. Further, I am deeply indebted to my fellow Americans who, through insurance, have been supporting my TKI needs! I know exactly what you mean about the lymphoma possibility lurking. When things were hardest, I just wanted to know how good (or bad) my future might be: to begin to paint my own, internal picture of how steady my relationship with this body and the world was likely to be. Waiting for someone to decide to give you a test throws that self-understanding all out of whack. Good luck on your results. Thanks for the passover wishes: truly a season for people like us! God bless,David
Date: Fri, 3 Apr 2015 13:29:48 -0400 From: [email protected] To: [email protected] Subject: Re: [CMLHope] Dual Diagnosis: CLL/ CML Dear David, Thanks for your update. You are a brave soul. I am sorry you have had such a time getting on the meds for CLL. It seems that our initial experiences can be hard until we get settled into the routine, dosages etc..that work best for us. Still, two TKI's at once. Wow. It's good to feel confident that Gleevec will do it's job and keep the CML at bay as it has in the past. Taking the TKI for CLL will, I have great hope, will work just as effectively for you. My CML came back very quickly while I was off sprycel on a break...and the sprycel, in a two month period back on did it's job and the CML is at very low levels...I have been struggling for a while, and some of my blood work has been off enough that they are thinking about doing a BMB to see - not about the CML, but if lymphoma or something else is lurking...They are waiting another 6 weeks, and redoing blood work again. If it is the same, or worse, they will do BMB. I n some ways, Iwish they would do it and get it over with...and I could know a definitive.. Unfortunately, having had two lower back surgeries this past year, I have a worry that the pressure used on the hip bone could ignite further disc, pain issues...so...as always it's a balancing act. My doc says if I have lymphoma, it's just another TKI....and that I can be on two at once and others do this successfully and not to worry....Glitches will come but they can be ironed out....so I am passing her wisdom on... Carry on...and happy holidays to you and everyone out there.all my CML buddies.......Marty....happy passover!! So happy you are here to celebrate!! May your pain get better and better each day. Warm regards, Beth -----Original Message----- From: David Bradley <[email protected]> To: cmlhope <[email protected]> Sent: Fri, Apr 3, 2015 10:13 am Subject: RE: [CMLHope] Dual Diagnosis: CLL/ CML Thank you, Giora. You are very kind. I guess we are all fighting the bad mutations. Best of luck in your struggle! Date: Fri, 3 Apr 2015 17:12:12 +0300 From: [email protected] Subject: Re: [CMLHope] Dual Diagnosis: CLL/ CML To: [email protected] Dear David You are a special brave person and i wish you all the best and great success on your dual fight. You are the only person i have heard of that is on both Ibrutinib and Imatinib at the same time My best regards Giora נשלח מה-iPhone שלי ב-3 באפר׳ 2015, בשעה 16:51, David Bradley < [email protected]> כתב/ה: 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]> 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 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. -- -- [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.
