Hi and good luck to you. I think one of the most important things about taking Tasigna is not having any food with it. For some reason it just quit working for me after 8 months. I am doing good on Sprycel but there is the risk of the pleural infusion on that also. So we are at risk no matter what we take, but the CML is going to hurt us if we don't do something so we have to do the best we can. I have had no sign of the PE as of yet. I read somewhere that you get that in the first year so I am going into my 2nd year now. However, I do know some who have gotten the PE after a few years on it. Fight on CML Warrior, Jeanie<3 In a message dated 8/21/2010 8:41:25 A.M. Pacific Daylight Time, [email protected] writes:
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
