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Retaining/regaining fitness on dasatinib

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I was diagnosed in May this year.  I came into this in worse physical condition than I normally am as I'd been sick a number of times during the winter.  But with livestock to care for I'm never completely sedentary.  I was on nilotinib June and July, but taken off after a TIA.  I've been on dasatinib since early August, 100 mg/day to start, 50 mg/day since Oct 8th.  My blood counts have been in normal ranges on the both the nilotinib and dasatinib since the beginning of July.

I'm working hard trying to regain my normal level of physical fitness.  August through the present I've been walking/running 2-2.5 miles daily.  Mostly walking, with short stretches of running interspersed.  Day after day, I'm not getting at all fitter, indeed some days I'm worse.  The short strips I run leave me heaving with a long time to recover.  Even the uphill portions I walk get me breathing hard.  The rare day my legs have any energy I just run out of power faster on the running portions.  I've been fit my entire life and since my exercise is mostly outside I generally find myself a bit out of shape in spring, which resolves in 2-3 weeks with little effort.  

I had a chest x-ray a couple weeks ago, normal.  I had a cardiac stress test today, also normal.  Though I was really breathing hard during the test for what I would have considered mild exercise a year ago, I was able to keep my oxygen up at least to 98%.  So apparently this is just me on dasatinib.  Somehow I need to get stronger.  I'm a high energy and active person normally, and this extended inability to celebrate physical energy is draining on a number of fronts.  I just signed up for Tai Chi in hopes that will help.  I've always eaten a fairly healthy diet, and working with a dietitian now for an even healthier diet.  

Has anyone else been able to work through this?  Any tips as to what worked for you?  I don't need to be running road races to be happy, but wheezing like an 80 year old chain smoker after jogging a hundred yards up a mild slope is miserable.  Most of my farm chores are not particularly strenuous, but I'm often breathing hard just getting the regular work done now.

Thanks,

Maria

For me personally the only way I make any progress back to what used to be normal is strength training just to retain some muscular strength and hard short interval runs monitoring HR recovery so that I know heart isn’t being over stressed.  Can’t say at the moment I’m improving but it does help to slow the decline and it makes my head happier.  I sometimes go for long easy bike rides and include some hills but still have to ensure HR is fully recovered after the efforts.  Recovery is the main problem as like yourself it’s a major effort to get stuff done.  
If you are very busy as work throughout the day that is tiring enough for most people and if you throw in this condition you at on the back foot to start.  

Regards 

 

Mick
 

The jump from 100-50mg is quite big, but might take a little longer to filter through making you feel better. I know it did for me.

May isn’t that long ago, and in simple terms your body has taken a battering from CML and might take a bit of time to recover. 

I’ll be honest, I have never regained my previous level of fitness or activity since before diagnosis. I can still go 100 miles an hour, just not for as long as I used to. But many other people have. I’ve had a few chest infections over the last few years, and my doctor has given me salbutamol inhalers. I use these when chesty, but at times when I’ve been planning a long walk or anything a bit strenuous I’ve taken a few puffs and that has really helped too. To me, with exercise, it’s not that my muscles can’t keep up - it’s always my lungs. Better general fitness would probably help in that regard too.

David.

That made me smile!  it’s amazing what you think you can still do until movement kicks the reality in! 🤣

No harm in trying though 💪🏻

My husband had severe shortness of breath on Sprycel 70 mg.  Took a drug holiday and it got better but then continued when he went on 50 mg.  All cardiac and pulmonary tests were normal and they ruled out pleural effusion.  He finally had to go off Sprycel and it took many months to get back to normal.  Be sure pulmonologist rules out everything.  SOB seems to be a side effect from the drug even absent PE’s.  Good luck.  

Hi Maria,

I was diagnosed in 8/2018 and also love to run. Not being able  to workout like I usually do worried me. I was put on Dasatinib 100 mgs  and the first three to 5 months it was very hard to run. I either had a pounding head ache or the first mile felt like I was wheezing. What I tried to do is still run as far as I usually do but not as fast. As I would get winded quite easily. Even if it meant I had to walk i still tried to reach my distance goal.  Luckily overtime I have got my endurance back and feel like I did before I got diagnosed. Yesterday I ran 7 miles. A distance that I have not tried to run since being diagnosed! IT felt great and I ran as fast as I did before. I think its important to keep working out even if its hard just like you have been doing. Dont give up! Be patient and gradually hopefully you get close to where you were or atleast to where you are not wheezing. I changed my diet, sleep more, and take vitamins. Not sure if all those things helped but I have had good results since and im still running! Wish you all the best.

 

-Jeff

Pleased to hear you can still get some miles in!! 😁

This has all been very useful.  For now I think I'll just walk the distance until some other problems are sorted out.  I'm going to get a heart rate monitor watch so when I start trying to run part of it again I can be attentive to my HR and in particular how long it takes to recover after the running sections.  The walk at least should keep my muscles reasonable and my brain sane.

Thank you.

If you plan to run it’s important to keep the legs strong enough for the activity.  Walking does very little to maintain the strength needed.  Simple things like full range squats, ski sits and single leg forward/backward lunges.  Oh and don’t forget to work your glutes!  Lots of stuff online, it doesn’t take long  to do!  
 

hope it all goes well, stay strong💪🏻😁

Keep up the good work! I've had to accept that I may never get back to the level of fitness I had before being diagnosed. Before I was diagnosed I suffered all the problems associated with low red blood counts; shortness of breath going up hill, tiredness, lack of energy.

It took me a long time doing resistance band routines, pilates and weight training to build up strength again. I'm now three years since diagnosis and what really helps is to take a nap before 6pm if I'm working that evening.

I've been working on Jeff's suggestion of maintaining the distance but staying slow.  It felt like I was getting nowhere as every time I started to run, even slowly, my breathing could not keep up within 50 yards.  So it was mostly walking.  I finally figured out that if I ran even slower I can maintain it longer.  Not a lot further yet, but I think I'll be able to make some progress physically now that I can keep up the (veerry slow) running pace for enough distance to begin to build back my fitness.

Maria

I have the exact same problem. Just walking the stairs at home gives me a heavy breath. I can’t even run 300m without having to walk. I’m 47 and used to be reasonably fit before cml.

I’ve been running regularily now for a couple of months but there is very little progress. It worries me a bit. Is this common side effect of Dasatinib? Blood values is otherwise ok so this is something else. Does it get better over time?