Hi Karyn, I'm a mom of 20ish boys too, so I share your pain for your son. PCR is important but from my perspective so is quality of life.
I acheived PCR very quickly on Gleevec, but for me the GI and muscle side effects were so painful and debilitating that I had no quality of life and am switching therapies in search of the same results with less side effects. Each person is different and some will be more sensitive to one treatment than another. There has been some speculation that if one stops Gleevec it may not work again if resumed later, however, I have not specifically heard that about Sprycel...don't know if anyone else has. It may be okay to try Tasigna and go back to Sprycel if needed later. I can also offer a treatment idea for his knees that might be worth considering. I am a 19 year survivor of MS. I have had many joint related pain problems as a result of that. I am allergic to pain meds so I have had to find other alternatives. My physical therapist uses a very effective but little known treatment called iontophoresis. It is the use of a tiny electrical current to draw injectible cortisone through the skin into a joint without the use of an injection. Much less painful and just as effective. Since Sprycel is a liver enzyme inhibitor it can affect the levels of things like cortisone in the blood, but this is probably not as big a problem when it is isolated to a joint like a knee. Worth discussing with the doctors. Since he is PCRU have they considered a small Sprycel vacation to see if the joint pain deminishes? They do this with other Sprycel side effects. Congratulations to you and your son on the wonderful 8 year, and still counting, survival. It gives hope to me. Keep the faith, peg On Aug 24, 9:11 am, kary...@comcast.net wrote: > 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 ofhttp://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 ofhttp://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 athttp://groups.google.com/group/CMLHope > > -- > [CMLHope] > A support group ofhttp://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 athttp://groups.google.com/group/CMLHope > > -- > [CMLHope] > A support group ofhttp://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 athttp://groups.google.com/group/CMLHope > > -- > [CMLHope] > A support group ofhttp://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 athttp://groups.google.com/group/CMLHope > > -- > [CMLHope] > A support group ofhttp://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 athttp://groups.google.com/group/CMLHope- > Hide quoted text - > > - Show quoted text - -- [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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