13 replies to this topic

[jlegakis]

I am an avid distance runner and was DX in Feb. 2014. On 400 mg Gleevec my PCR only dropped to 76% after 6 mos. but I was able to average under 9 minutes per mile for 5 km or 3 miles. Now on 600 mg I cannot even run under 10 minutes! I did reach CCyR, but I would like to know why I get tired so fast? I am 67, but I need some HELP! Is it the increased dose? Everything else is the same... so?

[Trey]

Increased dosage = increased side effects for most people.  Fatigue can be compounded quickly as dosage increases.  Sometimes the fatigue will decrease over time but the higher dosage has taken you in the opposite direction.

 

You would probably benefit from switching drugs, maybe to Tasigna.

[chriskuo]

What are your red blood / hemoglobin counts?

[jlegakis]

Hi! My hemoglobin is 12.9 and my rbc is slightly below the range. I do not feel tired during the day, but when I go out for a daily run I don't know what to expect! Some days I will have spring in my 67 year old legs, while on others I will feel dead and devoid of energy even after a day of REST! On 400 mg Gleevec my HGB was 13.7 so maybe it's the increase to 600 that has induced this fatigue? In fact, before I had CML my HGB was 15.8 - big difference? And the confusion insofar as to how I'll feel in a 5 km race NOW is upsetting because once I run hard, at times, there is no power in my legs! But, ALAS - I have had races where I did feel good most of the way! So is the increase from 400 to 600 mg that huge? I don't want to switch meds since I reached CCyR after 6 mos. on 600 Gleevec. Running has been part of my life since I was 15 and it has been a savior regarding stress. Should I just forgo the races for a while because they can be Tough?

[chriskuo]

Your hemoglobin should be no problem for regular activities but it might have some effect on your running. Your body may adjust and bring your levels your levels up over time. Are you getting CBC's on a monthly basis?

[scuba]

The difference between 15.8 and 12.9 is significant and can explain much in the way of "no energy" when exercise starts to peak. Also the fact that your RBC's are below range (below normal) means that supply of oxygen to your working muscle cells is limited. At normal work loads - no problem, in fact we can get by without noticing anything. But when you exert yourself as running does - especially competitive running - you are taxing your system to supply oxygen so you can burn fuel to produce muscle work. You have plenty of fluid (i.e. nutrients) - but they all need oxygen to burn. Your body can accommodate somewhat. You need more red blood cells - and TKI's can suppress their formation. Our so-called new normal. 

 

This is why Lance Armstrong had an advantage by cheating. He needed more red blood cells per unit in order to maintain high level of performance in comparison with his competitors. I can just imagine what his hemoglobin and RBC count looked like as a result of the doping and transfusions he did.

 

I feel the same way when I run - although it's getting better since my RBC's and hemoglobin are returning. You might try doing high intensity sprints to condition your muscles to burn anaerobically and rely more on stored energy than blood derived energy. It's working for me - and I am getting a bit leaner and faster as a result. But maintaining longer distance times is still difficult. 

[Gail's]

I felt really stupid to have to experience fatigue compared to being tired after a long days' work. A friend told me the difference is being tired is cured with rest. With fatigue, sleep doesn't help. I know it's probably obvious to a lot of you but realized it now that I'm feeling it. I noticed it first when I felt like I was walking slower and finding it harder to go long distances. It's actually better now after 5 months of meds. I feel like I'm picking up the pace!

[Pin]

race NOW is upsetting because once I run hard ,at times, there is no power in my legs!

Are you taking a decent amount of magnesium and calcium supplements? I notice when I don't take mine for a day I get an increase in cramping, a huge reduction in strength and an increase in fatigue, particularly in my calf muscles - they feel like logs.

[jlegakis]

I asked my onc to run a Comprehensive Metabolic Panel to see what my Calcium, Magnesium, protein total. I heard at my LLs support group that this also includes sodium, chloride and albumin testing. Has anyone had this done? My running has really gone south, since my Gleevec was increased from 400 mg to 600 mg 6 mos ago. My breathing is generally fine, but my thighs do not have that old ZIP! I am going to a CML specialist in the upcoming weeks to figure this out - hopefully! He is an avid marathoner too and should have a lot more insight than I have! It's so frustrating, but I am grateful we all have TKI's....

[scuba]

Are you taking a decent amount of magnesium and calcium supplements? I notice when I don't take mine for a day I get an increase in cramping, a huge reduction in strength and an increase in fatigue, particularly in my calf muscles - they feel like logs.

 

Calcium is not wise to take as a supplement:

http://www.health.ha...en-201302065861

 

Magnesium is the likely culprit leading to muscle cramping. Many of us are deficient in Magnesium. TKI's make it worse. I had leg muscle cramping during running, walking and sleeping (mostly after starting TKI therapy). Once I started a supplementation program using Magnesium Taurate, my cramping disappeared. I never had it again.

 

Calcium is not needed as long as you eat food. Magnesium is more of a problem in our over processed soils to get enough. So supplementation is good. It's hard to overdo Magnesium, but easy to overdo Calcium. 

 

Try Magnesium first - and see if that solves the problem. You'll sleep better too.

[jlegakis]

I was more upbeat when you informed me it could be magnesium, because I am so discouraged running on dedddd legs! Maybe it's old age too - 67? I'll get back to you when I get the results of my Metabolic Test next week! Thanks for great advice!

[jlegakis]

I found out a few days ago from my metabolic series of tests that ALL my minerals and electrolytes are in the normal range but at the low end. So, my mg., ca. etc. are OK. Could I just be tired on my runs from the 600 mg of Gleevec that I've been on since Nov. 1, 2014? I was able to run sub 9 minute miles in races on 400 mg. last year BEFORE my onc upped it to 600! Now, I am lucky to run 10 minutes per mile!!! Again my HGB also dipped to 12.6 on 600 mg. as opposed to 13.6 on 400?! Will I just have to bear with it since my PCR did drop to 4% on 600 mg? I could really use some advice but I know my onc will NOT reduce my dosage back to 400 mg perhaps until I reach MMR. What to do???

[Trey]

CMP mineral results do not tell the whole story, especially in summer heat when minerals are sweated out quickly.  I would still add extra magnesium and potassium (both) especially on hot days. 

[Dom]

Is magnesium normally reported on a CMP? I don't see it on mine. I take a magnesium supplement, because I once twisted my leg very very slightly and ended up with a PAINFUL pulled muscle. I'm much better now, no leg cramps either.