Hi Tom, Thanks so much for taking the time to share. I knew there were folks out there maintaining on 20mg a day, I just didn't personally know anyone :)
I was on 20mg a day last year, but only for about a month before they changed it to a larger dose twice weekly. So it was really not enough time to see if it would actually be effective for me or not, and not enough time to see if I would develop the same daily dose problem I had with the larger daily dosing. I have a 24 year history with MS, which has put muscles in a more weakened condition than the average person. The side effects of muscle weakness, fatigue, brain fog and spasticity would become cumulative and worse over about 5 -6 weeks, causing me to have to take a 1 week break each time I became completely debilitated. Since I was only on the 20mg for about a month, I really didn't have time to see if that problem remained or not either. It is good to know that I may still have that as another option if I can't make the 50mg twice weekly work for me. Through all these changes, right now I am still undetectible...would be nice to keep it that way. Thanks again so much for reaching out! Warmest regards, peg On Monday, April 29, 2013 11:34:51 AM UTC-7, TEDBDD wrote: > > 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] <javascript:> 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 > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email protected] <javascript:> > To unsubscribe from this group, send email to > [email protected] <javascript:> > 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] <javascript:>. > For more options, visit https://groups.google.com/groups/opt_out. > > > > > > > -- -- [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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