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So happy today

I am a runner and have completed three half marathons in the last year in good pace times except for the last one. Over the last year my running had deteriorated to the point where i could only run 900m without having to stop for a rest due to severe cramping in my calves from lack of oxygen getting to the muscles. I have now been on meds for three weeks so i decided today to go out for a run with my trainer to see how i would go. I ran 2.5 km before stopping for a 30 sec rest and then completed 5km. I'm on an oxygen high.

I still spend a lot of time resting and sleeping during the day as i tend to over do things but I will not let this disease beat me and i am in control.

I had to share this on this group as you would understand most how the goal setting that we do may seem minor to others but is often a big deal when balancing life and cml.

That’s great Fiona I too run and lift weights although not run for a while because of the colder months and I was lifting weights until I recently got some pain in right shoulder, arm and a numb index finger. I am on Tasigna and hoping it won’t last long. I am 7-8months into therapy. Symptoms very mild so far however the last couple of weeks have been harder. Again hoping it’ll pass. Exercise is so good for the mind and body providing your CBC levels are normal. Get those Endorphins released and good for you!

Alex

Excellent. We can now post pictures.

This is a very rough sketch. I am 62 and I swim and maintain accurate records with a specialist watch. I always swim non stop front crawl for 60 minutes at a constant speed. Prior to diagnosis, the number of 25-metre laps that I could swim in an hour was reducing. At the same time, for various reasons, I had regular full blood count results. My blood count was increasing over the months. This is nothing to do with TKIs, but there seems to be a marked correlation in my white blood count increasing while my strength was reducing. 

In retrospect, it appears that as my CML was taking hold my energy had declined. I wonder why this is?

 

I seem to remember in one of the videos from the CMLSUPPORT day that a speaker mentioned research as yet unpublished on muscle biopsies of cml patients showing decline in muscle mass and strength. This made sense to me as I too had noticed declining performance in swimming and pilates classes and breathlessness when walking up steep inclines. I was putting it down to stress until a friend pointed out that I had lost TOO much weight.

Two years after diagnosis I am beginning to get my strength back though I'm not back to where I was. Going for a walk with my 21 year old son I was pushing myself to keep up. I commented that I didn't usually walk that fast. He said he didn't usually walk that slow. Some ways to go yet!

Thank you, Rosiem. My contention is that this is down to decline in muscle mass and strength as you observe. It could possibly be explained by ageing in my case but the decline seems to have been sudden and no other illness has come to the fore. Your observations appear to be similar to mine.

There is a readiness to blame TKIs for all ills,  but I suspect that CML itself has been the cause of my decreasing energy. I should not complain too much because I otherwise have few side-effects so far and I am being very well looked after. 

I will be able to measure if there is an increase in energy over the months to come.

 

 

Pictures don't seem to work quite yet. I'm working on it!

David. 

David,  I can see the picture in the post above, but can't see the picture in my post from a few days ago.

Thanks for working on this.

Kirk