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 🐟🐟18,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. > 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 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.
