Thanks for you reply Jeannie. I remember well when your counts shot up...and how hard your journey getting on Ponatinib has been...you and John....I also hold where you are now...I only wish the pain in your side could go away.......but I am glad you are back in remission and doing pretty O.K.....
I was told now by two different docs that there are two new TKI's coming down the pike in trials......so lets keep on hoping...and moving forward..there is always hope!!!! take good care, 18's and love, Beth -----Original Message----- From: 'Icandoallttc' via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Wed, Oct 7, 2015 6:21 pm Subject: Re: [CMLHope] Test Day Hi Beth and that is a hard decision. I lost my remission while on the drugs and I was taking some time off from sprycel last year due to several health issues. If you remember my counts shot up and the dr said I had a mutant. I was then put on ponatinib and it is working well for me. Work with your dr and you do have other options if you need them Love Jeanie My Motto: Faith and Pills Jeanie \uD83D\uDC1F\uD83D\uDC1F18,s Dx 1/2004. CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center On Oct 7, 2015, at 5:27 PM, bkbarney via CMLHope <[email protected]> wrote: HI Jeannie and all, ...I am due for BCR abl testing so should get it in the next two weeks, results two weeks later...so I will update when I know more...Had a consult today at the Block Center here in Illinois.People tend to love him or hate him... I really like him. He thinks all my issues are sprycel related. Thinks I should go off everything and have drug holiday to give my autoimmune system a rest....steroids briefly to try and lower cpk so I can move better without such a severe boomerang effect. Back issues are no worse. That's good news from my end....since there have been several of my fellow warriors here who have lost there remissions spontaneously after years of successful treatment with their TKI's. I am scared to go off, unless I have to ...ie. like I did for past surgeries....however, I am thinking about it...perhaps I am just too toxic, and time off would help me to rebuild and repair, and tolerate better the TKI"s when I re-uptake in the future......so I am sitting with this decision..Not sure what I am going to do...except pray, and listen to other's words of wisdom....I know if I ask Dr. Druker, he would be fine with my taking a drug holiday..but I emailed anyway......thoughts from my friends here???? Love and 18;s, Beth -----Original Message----- From: 'Icandoallttc' via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Wed, Oct 7, 2015 12:59 pm Subject: Re: [CMLHope] Test Day Hi Beth and how are you?? Would love to have an update on all. Thanks!! ❤️❤️ My Motto: Faith and Pills Jeanie \uD83D\uDC1F\uD83D\uDC1F18,s Dx 1/2004. CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center On Oct 7, 2015, at 11:35 AM, bkbarney via CMLHope <[email protected]> wrote: Dear Richard, Sounds like good news all the way around. Hope your counts continue to hold well and the November visit to the onc is a positive one! Your wife is healing well..slow and steady. Thanks for sharing the good news....Keeping you both in my thoughts and prayers. Beth -----Original Message----- From: 'Icandoallttc' via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Wed, Oct 7, 2015 9:26 am Subject: Re: [CMLHope] Test Day Hi Richard and happy you are better. I hope your wife will be home soon. Prayers always. My Motto: Faith and Pills Jeanie \uD83D\uDC1F\uD83D\uDC1F18,s Dx 1/2004. CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center On Oct 7, 2015, at 12:01 AM, Richard H <[email protected]> wrote: All is good at this house. Saw Kidney Dr. and my tests have improved the last 3 times. Took my CBC and I am keeping my Hem. is holding at 10. I hope it stays there until the end of Nov. when I visit my ONC. My wife is improving, and will see the Dr. Oct. 21st to see if she can start putting weight on the right side. Shoulder seems to be healing nicely. She has the healing knot on the shoulder and is feeding herself with her right hand and is raising the upper arm to almost shoulder height without pain. We are hoping she can come home in Nov. when she can get out of the wheel chair and up and down without help. Due to heart surgery and a pacemaker all I can due is call for help if she has a problem. 18's Richard H. -- -- [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. 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