Hi, PCR wise he is doing excellent on 50 mg Sprycel. The problem is his joint pain is severe. It is in his knees mostly. He is only 20 years old (diagnosed at 12), so this is definitely a Sprycel side effect, not arthritis or age related pain. We have tried everything under the sun to help relieve the pain, and the only thing that even touches it is hydrocodone, which is a huge worry to have him continue taking that regularly. He doesn't feel good most of the time, and is fatigued. So, the decision is whether to try Tasigna and hope for no side effects, or at least lesser ones, but then is it worth the change when PCR's are always excellent on Sprycel? It is a decision he is very worried about.
Karyn ----- Original Message ----- From: icandoall...@aol.com To: cmlhope@googlegroups.com Sent: Tuesday, August 24, 2010 6:40:25 AM Subject: Re: [CMLHope] Re: Millie if it ain't broke don't fix it Hi I am on 100 mgs of Sprycel daily; no joint pain at all. My onc says "if it ain't broke don't fix it." If he is doing good PCR wise on Sprycel, I don't know why you would change. Is there a reason? Jeanie<3 In a message dated 8/23/2010 5:05:44 P.M. Pacific Daylight Time, ho...@ptd.net writes: I'm so sorry it has taken me so long to answer your e-mail. Guess I wasn't to sure as to what to say. I've had the joint and muscle pain before Sprycel, and on Tasigna. I have severe Arthritis and so that's why I have so much pain. My Oncologist just thought that Sprycel would cause it to worsen, so he made the decision not to continue on the Sprycel and switched me to Tasigna. I know that this isn't a lot of help to you or your son. I honestly wish I could be of more help. I'm in a wheel chair most of the time, due to the arthritis and it continues to be a problem. I hope that someone can give you the answers that you need. I know how much you must worry about your son. Take care, and I'll keep you both in my prayers.....Millie ----- Original Message ----- From: kary...@comcast.net To: cmlhope@googlegroups.com Sent: Saturday, August 21, 2010 1:28 PM Subject: Re: [CMLHope] Re: Millie Hi Millie, Can you tell me how you are doing on Tasigna compared to Sprycel? My son also has the joint pain extremely bad, and is very worried about trying Tasigna because he is doing so well PCR wise on Sprycel. If you would let me know your experience with the difference in side effects, particularly if the joint pain continues on Tasigna, I would be grateful. Thank you, Karyn ----- Original Message ----- From: "C.M. Houtz" <ho...@ptd.net> To: cmlhope@googlegroups.com Sent: Saturday, August 21, 2010 9:03:20 AM Subject: Re: [CMLHope] Re: Changing to Sprycel not Tasigna after all. 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" <peghardi...@hotmail.com> To: "CMLHope" <cmlhope@googlegroups.com> 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, icandoall...@aol.com 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, > > peghardi...@hotmail.com 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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > 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. 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