Hi Tom, you and I seem to be following the same path. Gleevec and Tasigna quit for me and I was put on (3) 50mgs pills. They soon dropped it to (2) 50mgs daily. I went into remission within 3 months. I have been on Spycel for almost 4 years now and I asked my onc at Moffitt Cancer center if I could cut down to (1) 50 mgs pill a day and he said if its not broke don't fix it. I told him I was afraid of PE and he said that was the last thing I should be worried about. I am getting a little skeptical at his treatment. I was glad to hear that a doctor at MD Anderson advised you to go on 20 megs a day. I only get the pill in the 50 mgs strength and they don't advise cutting it, so I have, on my own, cut down to 50 mgs a day with 2 pills sometimes during the week. My blood is doing good so far. Good luck to you, Jeanie<3 dx jan 2004 started Gleevec Gleeve quit working for me in 2009 put on Tasigna Tasigna only worked for a few months. Put on Sprycel in Sept 2009 Remission after 3 months As of today, doing good except for a few problems Celebrating my 75th birthday soon. In a message dated 4/29/2013 2:34:53 P.M. Eastern Daylight Time, [email protected] writes:
Peg....My history is below....I, too, couldn't take Sprycel at full strength. After washing out with Tasigna and Gleevec, I started Sprycel @ 100mg....and had to reduce the level to 20mg which I have been taking for about a year (see my history below). My major side effect with Sprycel was pleural effusion which led to the reduction in dose. I do also have pretty bad joint pain from time to time along with peripheral neuropathy.....but I definitely have more energy at the lower dose. I am doing this at the advice of my Oncologist at MD Anderson and as you can see, my PCR is still looking great after a year. You might try the lower dose continuously and see if it works for you. One thing I am sure of is that we all react somewhat differently to these TKI's. As a result, I think some experimentation is in order as you and I can attest to.....but only with supervision! By the way, you may want to put together your short had history as I have done below...I have found it really helps others know what your journey has been...and even my Doctors find it helpful as well. This format is not mine...I believe it was developed by one of the original CMLers, Zavie Miller who, sadly, passed away recently). Hang in there! Best, Tom in KY Tom D, BD: 8/1941 Updated::4-7-13 DX CML 12-23-2008 MDA Protocol: Tasigna-400mg; 2xday-1/09 On Flecainide for AF...still had frequent episodes Q PCR bone@ 0.17 on 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 Steroids..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\ AF returned infrequently Q PCR bone-0.05 Started Sprycel @ 100mg/day-10/20/09 Some AF...increased FLecainde..1, 2x/day Q PCR bone..0.07 Stopped Alcohol…no AF, ½ Flecainide 2x/day Q PCR Blood…Non Detectible-12-13-10 Q PCR Bone..0.01--2-25-11 Q PCR Blood…Undetectible-5-19-11 Reduced Flecainide to 1/2 per day Pleural and pericardial Effusion: stopped Sprycel-12-6-'11 Prednisone 50mg /day to combat PE; 12/14/'11 gradual reduction Pleural Effusion clear 12-21-11 Started Sprycel 70mg/day..12-23-11 QPR bone <0.01...2-16-12 Started Sprycel 50mg/day..3-10-12 Chest pains...slightly more PL Eff 4-19-12 Steroid Dose pack to alleaviate..still on 50mgs Change to 20 mgs/day Sprycel..4-26-12 Chest clear, effusion gone-5-14-12 Q-PCR Blood-Undetectible-6-13-12 Neuropathy moving up legs, weakness noted ~7-12 Q-PCR Blood MDA-<0.01…8-21-12 Q-PCR Bone MDA-<0.01...3-5-13 In a message dated 4/29/2013 11:57:23 A.M. Eastern Daylight Time, [email protected] writes: Hi all, Sorry it takes me a while to catch up these days. Just read Beth's post on spasticity and wanted to share. There are many folks having muscle related problems with all of the CML drugs. The spectrum ranges from the seriousness of myopathy to simple muscles spasms, with everything in between. Gleevec gave me myopathy. Because I was not a good candidate for Tasigna we moved directly to Sprycel back in 2010...before it was front line approved. For me Sprycel causes such severe muscle contractions that I have developed contractures in several places in my body. At first we just thought it was my arthritis causing limited range of motion, but then several months ago finally realized what had happened. I am in physical therapy now to improve my range of motion. We have also had to radically adjust the Sprycel dosing...not just for the contractures, but also the crippling fatigue, mind numbing brain fog, bone pain and Sprycel induced depression. The only time I feel really good now is on Sprycel "holidays". After many dose reductions here's where I am at...in 2011 we started dropping the daily dose....first 70mg then 50mg. We also tried 50mg every other day, then 20mg daily. All of these changes still held me at PCRU. But even at 20mg daily it was difficult to have a normal life. There was also a concern from the specialist I see who helped develop Spycel. He believes that from what he is seeing, the way Sprycel affects the CML is more related to the size of each dose, rather than the frequency, so he had a concern that 20mg a day would not hold the PCRU. Although I have heard of cases where it is. We also noted that for me a "washout" of a few days off Sprycel helped me recover from the side effects. Without that washout, the affects would load up. So this was when we started experimenting last Oct with twice weekly dosing. Unfortunately 70mg still proved to high a single dose for me, so we did a brief five months at 50mg every third day. However, the side effects from each dose are still so severe, it is like sticking my finger in a light socket, everything in my body clenches. This starts two hours after each dose and lasts for almost 24 hours. Every third day dosing was just craziness, since I couldn't plan around that well...and found myself dragging myself painfully through life every third day...hating every minute of it. We finally realized that the only way I could have any quality of life was to drop back to a twice a week dose and take those days out of my schedule...just plan on being down for the count on those two same days each week. So we are now at 50mg two days a week. I take a muscle relaxer with each dose, and again at 12 hours if I need it. This really helps with the muscle spasms. I lose two days out of my week, but the quality of the other five is much better now. We are monitoring my PCR monthly to see if the PCRU still holds. I can't recommend experimenting for everyone...it carries a risk of becoming resistant. However, the quality of my life had become so bad that the cost of saving my life was no longer worth it. Life in the absence of any quality is simply not a life. For those of you who's reactions to TKI are not as dramatic as mine, adding a muscle relaxer to each dose, even daily, might bring the muscle spasm relief you need. My drug of choice is Robaxin...but to each man his own! Warmest regards to everyone! Peg -- -- [CMLHope] A support group of _http://cmlhope.com_ (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/groups/opt_out. -- -- [CMLHope] A support group of _http://cmlhope.com_ (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. 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