Advanced Member
Posted 21 March 2017 - 07:08 PM
CO-Enzyme Q-10 has been suggested for the Mrs. Unfortunately she looked on the internet which is full of terrifying kooks telling you your head will fall off.
So I figured I'd ask you terrifying kooks. Anyone else with CML taking CO-Q-10 with full knowledge of their onc who is ok with it? Trey? Anyone?
rct
Advanced Member
Posted 21 March 2017 - 07:46 PM
As with almost all supplements, it is fine to take with our TKI drugs. Whether it will be helpful, I cannot say. With your wife's pancytopenia issues I guess I would try anything and everything.
Advanced Member
Posted 22 March 2017 - 07:34 AM
Co-enzyme Q-10 is in a digestive enzyme supplement I take called Digest Gold with ATPro. My oncologist knows about it but made me do a CBC 2 weeks after I started it because my ALT and bilirubin were already slightly elevated at the time, which was mid - January. Last 2 CBC's since then have shown all liver tests to be normal, so it certainly hasn't hurt me. I take this digestive enzyme at the start of each meal, so because I am on Tasigna, I do not take it for at least 2 hours after eating. My digestive issues were much worse before I started taking this supplement. I also take probiotic supplement once a day.
Dx 9/26/16 WBC 28800; platelets 749; FISH 97% PCR 43%
Tasigna 600MG per day
October 2016 PCR 22% IS
November 2016 PCR 5.8% IS
December 2016 PCR 0.1% IS MMR!!
March 10, 2017 PCR 0.006% IS MR 4.22
Tasigna 450MG per day
April 5, 2017 PCR <.003% IS
June 5, 2017 PCR <.003% IS (dose reduction validated!!!)
Tasigna 300MG per day starting June 15, 2017
6-day drug break starting June 20, 2017 due to multiple AE's
July 24, 2017 PCR <.003% IS
September 18, 2017 Negative, AKA PCRU
Tasigna 150mg per day starting 9/18/17
October 30, 2017 Negative
December 11, 2017 Negative
Advanced Member
Posted 22 March 2017 - 07:48 AM
Thanks folks. This is an attempt to help with some exercise induced pain, a step along the way. Hopefully it at the very least won't harm her.
rct
Advanced Member
Posted 22 March 2017 - 11:06 AM
My oncology pharmacist said to absolutely not take CoQ10 after I started Sprycel
DX 3/30/2016 WBC 484.2 FISH 95.3
took Hydrea 3/30-4/11
taking Sprycel 100 mg since 4/5
10 day break from Sprycel for platelet count of 12 4/26-5/8
7/07/2016 1.47% (IS)
9/30/16 BMB PCR .1259 switched to new onc
12/30/16 PCR .1569
4/7/17 PCR .0904 MMR
7/14/17 PCR .0520
12/1/17 PCR .0148
Advanced Member
Posted 22 March 2017 - 04:43 PM
Beno:
Did your oncology pharmacist give you a reason why you couldn't take CoQ10 on Sprycel?
Dx 9/26/16 WBC 28800; platelets 749; FISH 97% PCR 43%
Tasigna 600MG per day
October 2016 PCR 22% IS
November 2016 PCR 5.8% IS
December 2016 PCR 0.1% IS MMR!!
March 10, 2017 PCR 0.006% IS MR 4.22
Tasigna 450MG per day
April 5, 2017 PCR <.003% IS
June 5, 2017 PCR <.003% IS (dose reduction validated!!!)
Tasigna 300MG per day starting June 15, 2017
6-day drug break starting June 20, 2017 due to multiple AE's
July 24, 2017 PCR <.003% IS
September 18, 2017 Negative, AKA PCRU
Tasigna 150mg per day starting 9/18/17
October 30, 2017 Negative
December 11, 2017 Negative
Advanced Member
Posted 22 March 2017 - 05:08 PM
Advanced Member
Posted 22 March 2017 - 08:59 PM
CO-Enzyme Q-10 is found in every cell of our body. We need it to live. Saying it is harmful is laughable. But whether we "need" to supplement is questionable. For some people supplements are useful. For others it is just a waste of money. But it is not harmful.
Advanced Member
Posted 23 March 2017 - 08:06 AM
Yeah the idea is that this enzyme helps balance muscle tissue such that in some way prevents the pulls at the connection surfaces that cause lots of pain in us as we age. I have problems with my shoulders when I do certain things, and my forearms from decades of guitar playing. She does not get better with exercise, contrary to all conventional wisdom and probably quite a few folks here are the same. So for the muscular pain that just increases he wants her to try some time with this CO-Q-10 and see how it goes. NOT 42 BAZILLION MILLITONS THREE TIMES A DAY. Just a supplement. It also has some benefit to the gut I believe, which all Gleevec takers can identify with.
We aren't big on the whole supplements thing we just take regular vitamins, but this seems worth a try.
rct
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