Peg...I have been on all three...Sprycel last and it seems to be working well. I have atrial Fib and am on Flecanide which can be problematic with Sprycel...but so far, no arrhythmia and good blood results. My short hand history is below. I am lobbying for all of us to used some form of this when we communicate with each other so we have a quick summary of our journeys to share with one another. My experience suggests that each of us react differently to these drugs and that the side effects can be extreme. Fortunately there are options...different TKI's (Sprycel, Gleevec, Tasigna) and they can also adjust dosage. Hang in there! Tom in KY Tom Dunham, BD:8/1941 DX CML 12-23-2008 MDA Protocol: Tasigna-400mg; 2xday-1/09 Q PCR bone@ 0.17 7/09 Acute Pancreatitis-7/5/09 Stopped Tasigna-7/13/09 Q PCRU blood-7-29-09 ! Started Gleevec-400mg/day-7/31/09 Developed rash ~ 8/19/09 Rash treated with Steriods..improvement Rash worsens~9/22/09 Stopped Gleevec-9/28/09 Restarted Gleevec @300mg/day-10/8/09 Stopped Gleevec-10/13/09-toxic rash\ Q PCR bone-0.05 Started Sprycel @ 100mg/day-10/20/09 Some bi-lateral peripheral neuroapathy in feet Q PCR blood-7-10... 0.01 Zavie Miller's Zero Club 1292 In a message dated 8/21/2010 12:03:34 P.M. Eastern Daylight Time, [email protected] writes:
Hi Peg....Actually, my Onc. had me on Sprycel after Gleevec, but I had other issues and he felt that changing me to Tasigna was the right move. I have joint pain, and one of the side effects of Sprycel was that and he felt at the time, due to the fact that I was in so much pain, that Tasigna might be a better option. I wish you luck with the Sprycel. I know that it's a big move and can be frightening to change meds. I know that I was scared at first, but it has been working well for me. Hang in there and let us know how you're doing. Many hugs, Millie ----- Original Message ----- From: "peg" <[email protected]> To: "CMLHope" <[email protected]> Sent: Saturday, August 21, 2010 11:41 AM Subject: [CMLHope] Re: Changing to Sprycel not Tasigna after all. Hi Jeanie, Since Gleevec has been the gold standard in the US, many hemotologists are simply not as familiar with the other options as they possibly could be. Now that Tasigna has been approved as a 2nd, sometimes better, front line treatment there is just an assumption that this is the next natural step for all patients who are Gleevec resistant or intolerant. A kind of cookie cutter medicine, one size fits all. I had sought a 2nd oncology opinion, who also recommended Tasigna, with no consideration for Sprycel. An additional problem is that medical care is sometimes fragmented out so, each to his own specialty....with doctors not really having problem solving discussions with each other, as a healthcare team, like they did in the old days. When my original cardiologist was consulted regarding monitoring of QT risk with Tasigna he did not even know there was another option, and as most non-oncology doctors he was not familiar with any of the TKI's. It was only by accident that the oncologist referred me to a different cardiologist at the last minute, simply because he was in the same building making monitoring a bit more consolidated. Thanks to all the information and courage everyone at CMLHope provided me, I took it upon my self to educate this new cardiologist about ALL the options and varying risks. To him it was a slam dunk, the Tasigna just posed more of an uncontrollable risk for me than Sprycel. Obviously this will not be the same for everyone, but it does go to show how much we must all be our own best advocates. Knowledge is indeed power. I thank you and everyone here for arming me with the support I needed to do this. Things are only going to get more complicated in a few years when Gleevec becomes the first TKI to lose it's patent and go generic. We are bound to see many, if not most, US insurance providers limit coverage of CML treatment to generic Geevec, and not paying for, or charging extremely huge co-pays, for all other options. Let the games begin....let's all pray for a cure to come before that day! Thanks again and blessings to you also, (WE can do all through Him...) peg On Aug 20, 2:55 pm, [email protected] wrote: > Hi Peg good for you and I hope you do really well on it. > I didn't think they gave Tasigna for anyone with a QT problem. > Blessings > Jeanie<3 > > In a message dated 8/18/2010 6:59:09 P.M. Pacific Daylight Time, > > [email protected] writes: > > Hey all, > > Thank you so much for all of you taking the time to respond to me > through this. It has been a difficult week, sometimes leaving me > feeling almost bi-polar...with up days and down! You all shared > valuable experience and concerns that helped give me hope through this > process. In the end, today, after a cardiology consult requested by > my oncologist, the decision is to cancel the order for Tasigna and > submit one for Sprycel due to the additional risk posed by my existing > arrhythmia. The cardiologist felt that when he weighed the > risk...just in my case...of LongQT (tasigna) vs Plural Effusion > (sprycel), the Plural Effusion was far more predictible, controllable > and non-life threatening. He said that it was not one vs the other as > much as what the safest order to put them in was.... for me. But once > again, having a brother and sisterhood to call on has been, and > continues to be, an honor. You are all wonderful. Thanks again so > much, peg > > -- > [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 -- [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 -- [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 -- [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
