Member
Posted 19 October 2015 - 02:58 PM
So here's my question. How much of these side effects should we put up with. The gleevec I made my purse into an adult diaper bag for my self. Now on sprycle I feel like I have the flu all the time. My core burning up. 99. temps.
So what should be the limit of these side effect be.
What your biggest prob with these meds??
Advanced Member
Posted 19 October 2015 - 04:36 PM
Hi, tammielee,
It took me about 6-8 months to experience the full effects of Gleevec. At that time most of us were on it so we had some very interesting and funny conversations.
I moved on to Sprycel because of liver issues with Gleevec and I had a very difficult 4-6 month breaking in period. After that it has, mostly, been a breeze. I did develop a pleural effusion 2.5 years in, but dose reduction seems to have solved that.
Only you can answer your own question, but you have to temper it with the idea that none of these drugs are going to work for us if we don't give them a chance. I think docs tell us "all you have to do is take a pill" and many of them really believe it so we are shocked when it just simply isn't that easy.
There are side effects with all of these drugs, but, from what I have read, none of the side effects hold a candle to dying from this disease. So you have to decide what you will tolerate and try to figure it out with the help of your doc.
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Member
Posted 19 October 2015 - 07:36 PM
Thanks for you thoughts. I went from gleevec to a break of no meds for 2.5 months this summer that was heaven. No side effects from the meds and not dragging ass tired because of clm. Then to go back on sprycle and feel all the side effects again. ice cold hands, headache low grade temp of 99.s. My core is burning feet & hands are frozen. So on and so forth. IT all crazy some times.
Advanced Member
Posted 20 October 2015 - 10:49 AM
Tammielee - I missed how long these symptoms have been with you, but is it possible you just have a virus? I had one last year that lasted three weeks - never in my life had I experienced such a long "flu" - but it eventually ended. You asked about side effects from Sprycel that people have experienced. I would say, now that I've been on it 4 years, that fatigue is still with me as a problem, and puffy eyes, but not NEARLY as bad as they had been on Gleevec. The other stuff, mostly skin stuff, has receded.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
Advanced Member
Posted 20 October 2015 - 11:56 AM
Tammielee,
Other than muscle cramps (I learned never to stretch in the morning!) and some mild GI issues, I thought I felt great on Gleevec. It wasn't until I was off of any drug for 7 weeks waiting for my liver enzymes to calm down that I realized what "feeling great" really felt like so I can relate to what you said about your 2.5 months break.
I think we need to forget about comparing "feeling great" before CML to "feeling great" after CML. Before is pretty much always going to win out.
Is a dose reduction in your future? I didn't check to see what your response has been so far.
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Member
Posted 20 October 2015 - 03:18 PM
I've been on gleevec 400 then 200 stopped for 2.5 months now on 100 mg sprycle. I'm going to dr on thru and see what says. This sprycle got me more easily so tender hearted. To the point. I don't just symptomatize with people or the tv it's like their pain is mine. That's the best way to explain it.. So how odd is that
Member
Posted 22 October 2015 - 11:05 PM
Hi Tammielee. I was on Gleevec for a year...switched to Tasigna (caused liver damage after 2 months) and then over to Sprycel. I have found this out (at least for me): You need to take the Sprycel at the same time of day with plenty of water. Make sure that you do not take any other drugs, even vitamins for at least 2 hours before and one hour after. Sprycel can effect your Magnesium levels. If you do not adhere to the above......it can effect body temp. (or at least with me it really does). There is an app for the IPhone called "Mango Health" which is free. It gives you all of the drug interactions with Sprycel, over the counter as well as prescribed drugs. You just have to enter the ones that you are taking. I have found this very useful!
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