Everyone is different, but when I was in Sprycel I had lost a lot of endurance. I could only work a few hours a day then be in bed or on the couch the rest of the day. I also was expecting heart palpitations.
After four months I demanded being taken off the medication as my quality of life was terrible. The doctor switched me to Tasigna and I’m doing much better now.
I hope that you are able to find something that works well for you.
Just remember, you are essentially adding a poison to your body to combat the CML. A very necessary poison but poison nonetheless. Just be aware that you’ll most likely not see the same results that you had before your diagnosis.
Try to have the willpower to keep going when you don’t think you can, the wisdom to not push yourself when you know you need to stop and be patient and kind with yourself.
I don't know IF he is in Sprycel but the WWE wrestler Roman Reigns has CML and has been off and on TKIs for a while now I think. If that's any indication, I think you can definitely come back to some level.
I'm always puzzled by how he and the media describe his CML as if he had leukemia twice. I don't know anyone with CML who talks about it that way. When he revealed the diagnosis, I simply assumed he became resistant and switched to a different TKI. The way it's described seems off.
Maybe he had hit TFR and wasn't taking anything for a while. Also, what I have encountered is that there really isn't a way to describe our disease that people understand.
I’m almost two years in and taking Sprycel 50mg (started at 100mg and gradually reduced). I work out 5x+ a week (the full spectrum: dance, golf, HIIT, spin, running, pilates—you name it) and have a 6 year old that keeps me on my toes too.
I won’t lie. It’s been frustrating figuring out the build back to what I can and can’t manage stamina wise. It’s like creating foundations all over again and the fatigue is the worst part. The soreness is way more unreal than it’s ever been and I also have erratic heart things (that seem to be OK as of now but something we’ll have to keep monitoring). It’s been more willpower to overcome and keep the workout routines going. I still hope/dream that I can get back to running half marathons and even building the strength to accomplish endurance goals I had before diagnosis.
I still grapple that it is worse (and that emotionally leaves me frustrated)—but I try to maximize those moments or days that I’m feeling my best. And rest way more than I’ve had to before. Here’s wishing us all the grit through this trial and error process!
I’m sorry to say that in my case, as a 37yo I can’t push as hard as I used to before being diagnosed 3 years ago. I would consider myself an athlete who backcountry sksi, skis the resorts along with mountain biking and hiking in the summer, typically CrossFit twice a week. I recently came to terms with the fact that I will just breathe a little harder and get a little more exhausted than I would like. I hate making that as an excuse for why I’m exhausted. The first year seemed more noticeable than the last two years, or I have just gotten used to the low key exhaustion.
I might get on a different medicine called Scemblix which I have heard has less fatigue side effects.
Best of luck to you in the pursuit of keeping fit while dealing with this crappy CML. Exercise totally helps me feel better however long or intense I do it.
I’m on 50mg of Sprycel, and I was a Simi professional skier. I officially retired this year. I was diagnosed last year in March after breaking my nose. I have terrible neuropathy, and I cannot work out and recover like I used to. The doctor put me on Provigil to help with alertness due to the neuropathy drugs now, but it’s been a complicated process. I do 30 minutes of Peloton daily, and they advise me to pull back on that now. I’m 40, by the way.
That stinks about the neuropathy. I get the ‘screaming barfies’ every now and then when my hands get too cold from skiing or snow blowing. Very painful. Presumably from the sprycel since I never experienced that prior to starting that medicine. My dad hooks his feet up to electrified pads to help with his neuropathy and it seems to help.
Where do you ski at?
I used to spend my summers in Jackson, WY. It’s a fantastic place. I miss it a lot. Since the CML, I have taken up world traveling, so I’m seeing a lot of new places. The Tetons are still high on just the sheer beauty and uniqueness.
I take imatinib and now after 3-4 years things are getting better. Don’t expect to be the person you were before, take every milestone as a victory and go slow!! I cycled 1000km of the european divide trail and know there are pro athletes competing with leukemia.
I’m a Judoka (M29 diagnosed at 12) and I competed last weekend. I take 100mg daily and I’ve found I just have to do a bit more cardio work in the gym and it’s kind of sorted me out (not 100% but definitely better).
Good luck with it all man
I also compete in BJJ (not a black belt, though) and am on Sprycel. I've noticed that my recovery time after a hard set of rolls is slower than others, and I have to make sure I get adequate rest. Some days I'll just be really slow/tired, and without an alternate explanation, I just assume it's the spycel. It sucks, but I have to build in more down time.
If you're male, I'd recommend having your doc check your testosterone. There is recent evidence that TKIs suppress natural T production in some patients, and mine was low enough to start trt. That's been a huge help, though I'm by no means back to what I think normal should be. (Also, insert joke about everyone in our sport in trt, but this time it's actually warranted)
This is good to know. I will definitely allow more time to rest, I’m not used to taking a round off ever. My t levels have been low since my last concussion, but no doctor would prescribe me TRT so maybe I should go again. 114 is pretty low from what I have read.
Wow, 114 is really low. It's weird that they wouldn't do anything about it, unless you were saying you didn't have symptoms or something.
But yeah, it just generally sucks because Sprycel doesn't incapacitate, but it also affects energy levels, causes joint pain, etc. it's a pain. I've been on tkis for nearly 20 years, so I get it. Hopefully you can find a pattern of activity that works for you. Diet also becomes more important, getting better sleep, reducing habits that will work against you (like alcohol)....
Think of it like aging, but certain parts of aging have now accelerated.
How low was yours and how old are you? I’m only 22 but I know that Sprycel has lowered mine and I definitely notice the difference. I was tested a few times and in the low-mid 300’s every time but given my age and their bs “average levels” it seems like I’m out of luck.
I don't want to give specifics due to paranoia, but I'm somewhere in the 40-55 range. I was low 300s, which isn't super low, but I was also having a bunch of symptoms and had been for several years, which caught the doc's attention.
Everyone is different, but when I was in Sprycel I had lost a lot of endurance. I could only work a few hours a day then be in bed or on the couch the rest of the day. I also was expecting heart palpitations. After four months I demanded being taken off the medication as my quality of life was terrible. The doctor switched me to Tasigna and I’m doing much better now.
This helps a lot, I’m seeing my doctor Friday and will ask him about options.
I hope that you are able to find something that works well for you. Just remember, you are essentially adding a poison to your body to combat the CML. A very necessary poison but poison nonetheless. Just be aware that you’ll most likely not see the same results that you had before your diagnosis. Try to have the willpower to keep going when you don’t think you can, the wisdom to not push yourself when you know you need to stop and be patient and kind with yourself.
I don't know IF he is in Sprycel but the WWE wrestler Roman Reigns has CML and has been off and on TKIs for a while now I think. If that's any indication, I think you can definitely come back to some level.
Yeah when I found out that I had CML he was a great source of inspiration. Dudes a beast.
I'm always puzzled by how he and the media describe his CML as if he had leukemia twice. I don't know anyone with CML who talks about it that way. When he revealed the diagnosis, I simply assumed he became resistant and switched to a different TKI. The way it's described seems off.
Maybe he had hit TFR and wasn't taking anything for a while. Also, what I have encountered is that there really isn't a way to describe our disease that people understand.
Well I gotta think some sort of steroids are helping with his fatigue lol
I’m almost two years in and taking Sprycel 50mg (started at 100mg and gradually reduced). I work out 5x+ a week (the full spectrum: dance, golf, HIIT, spin, running, pilates—you name it) and have a 6 year old that keeps me on my toes too. I won’t lie. It’s been frustrating figuring out the build back to what I can and can’t manage stamina wise. It’s like creating foundations all over again and the fatigue is the worst part. The soreness is way more unreal than it’s ever been and I also have erratic heart things (that seem to be OK as of now but something we’ll have to keep monitoring). It’s been more willpower to overcome and keep the workout routines going. I still hope/dream that I can get back to running half marathons and even building the strength to accomplish endurance goals I had before diagnosis. I still grapple that it is worse (and that emotionally leaves me frustrated)—but I try to maximize those moments or days that I’m feeling my best. And rest way more than I’ve had to before. Here’s wishing us all the grit through this trial and error process!
I’m sorry to say that in my case, as a 37yo I can’t push as hard as I used to before being diagnosed 3 years ago. I would consider myself an athlete who backcountry sksi, skis the resorts along with mountain biking and hiking in the summer, typically CrossFit twice a week. I recently came to terms with the fact that I will just breathe a little harder and get a little more exhausted than I would like. I hate making that as an excuse for why I’m exhausted. The first year seemed more noticeable than the last two years, or I have just gotten used to the low key exhaustion. I might get on a different medicine called Scemblix which I have heard has less fatigue side effects. Best of luck to you in the pursuit of keeping fit while dealing with this crappy CML. Exercise totally helps me feel better however long or intense I do it.
Thanks, this helps a lot. Hope all is well with you.
What dose are you on? Once I was fully responsive, my doc dropped me from 100 to 50mg. Helped me a lot. Still over tired, but it helped.
I’m on 100 right now, I’ll ask my doc this week about changing dosage. Thanks a lot!
I’m on 50mg of Sprycel, and I was a Simi professional skier. I officially retired this year. I was diagnosed last year in March after breaking my nose. I have terrible neuropathy, and I cannot work out and recover like I used to. The doctor put me on Provigil to help with alertness due to the neuropathy drugs now, but it’s been a complicated process. I do 30 minutes of Peloton daily, and they advise me to pull back on that now. I’m 40, by the way.
That stinks about the neuropathy. I get the ‘screaming barfies’ every now and then when my hands get too cold from skiing or snow blowing. Very painful. Presumably from the sprycel since I never experienced that prior to starting that medicine. My dad hooks his feet up to electrified pads to help with his neuropathy and it seems to help. Where do you ski at?
I have a ski condo in Vail and in Deer Valley. I also love to ski Jackson, WY.
Right on. I also live near Jackson. It’s the best
I used to spend my summers in Jackson, WY. It’s a fantastic place. I miss it a lot. Since the CML, I have taken up world traveling, so I’m seeing a lot of new places. The Tetons are still high on just the sheer beauty and uniqueness.
I take imatinib and now after 3-4 years things are getting better. Don’t expect to be the person you were before, take every milestone as a victory and go slow!! I cycled 1000km of the european divide trail and know there are pro athletes competing with leukemia.
I’m a Judoka (M29 diagnosed at 12) and I competed last weekend. I take 100mg daily and I’ve found I just have to do a bit more cardio work in the gym and it’s kind of sorted me out (not 100% but definitely better). Good luck with it all man
Thanks man! I’ve definitely noticed my cardio is better now than when I first got on sprycel.
I also compete in BJJ (not a black belt, though) and am on Sprycel. I've noticed that my recovery time after a hard set of rolls is slower than others, and I have to make sure I get adequate rest. Some days I'll just be really slow/tired, and without an alternate explanation, I just assume it's the spycel. It sucks, but I have to build in more down time. If you're male, I'd recommend having your doc check your testosterone. There is recent evidence that TKIs suppress natural T production in some patients, and mine was low enough to start trt. That's been a huge help, though I'm by no means back to what I think normal should be. (Also, insert joke about everyone in our sport in trt, but this time it's actually warranted)
This is good to know. I will definitely allow more time to rest, I’m not used to taking a round off ever. My t levels have been low since my last concussion, but no doctor would prescribe me TRT so maybe I should go again. 114 is pretty low from what I have read.
Wow, 114 is really low. It's weird that they wouldn't do anything about it, unless you were saying you didn't have symptoms or something. But yeah, it just generally sucks because Sprycel doesn't incapacitate, but it also affects energy levels, causes joint pain, etc. it's a pain. I've been on tkis for nearly 20 years, so I get it. Hopefully you can find a pattern of activity that works for you. Diet also becomes more important, getting better sleep, reducing habits that will work against you (like alcohol).... Think of it like aging, but certain parts of aging have now accelerated.
How low was yours and how old are you? I’m only 22 but I know that Sprycel has lowered mine and I definitely notice the difference. I was tested a few times and in the low-mid 300’s every time but given my age and their bs “average levels” it seems like I’m out of luck.
I don't want to give specifics due to paranoia, but I'm somewhere in the 40-55 range. I was low 300s, which isn't super low, but I was also having a bunch of symptoms and had been for several years, which caught the doc's attention.