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?

CML and running: Part 2
#1
Posted 05 August 2015 - 03:35 PM
#2
Posted 05 August 2015 - 03:40 PM
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.
#3
Posted 06 August 2015 - 01:34 AM
What are your red blood / hemoglobin counts?
#4
Posted 06 August 2015 - 03:17 PM
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?
#5
Posted 06 August 2015 - 09:16 PM
#6
Posted 07 August 2015 - 02:42 PM
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.
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
#7
Posted 08 August 2015 - 12:56 AM
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088
#8
Posted 08 August 2015 - 06:41 PM
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.
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
#9
Posted 12 August 2015 - 04:12 PM
#10
Posted 12 August 2015 - 04:22 PM
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.
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
#11
Posted 13 August 2015 - 01:56 PM
#12
Posted 25 August 2015 - 04:26 PM
#13
Posted 25 August 2015 - 06:01 PM
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.
#14
Posted 25 August 2015 - 09:26 PM
Diagnosed in February 2014. Started Imatinib 400 in April.
2014: 3.18 0.91
2015: 0.22 0.16 0.04 0.55
2016: 0.71 0.66
(Started Imatinib 600 in April 2016)
2016: 0.42 0.13 0.45
2017: 0.17 0.06 0.10 0.06 0.34
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