Advanced Member
Posted 26 January 2014 - 10:34 AM
Hi,
I'm curious if anyone has ever discussed with your onc (or maybe even taken) a supplement called genistein, which is a natural TKI. Not sure if there's any potential in attacking CML with an EGFR-TKI in addition to our current targeted therapies:
Here is an old paper on the subject:
http://www.researchg...bitor_genistein
Thoughts?
Dan - Atlanta, GA
CML CP Diagnosed March 2011
Gleevec 400mg
Advanced Member
Posted 28 January 2014 - 08:04 PM
After my herbal experience, I'm a bit freaked out about taking anything 'natural' anymore!
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
Advanced Member
Posted 29 January 2014 - 12:45 PM
Yes, I share your sentiment @Pin. I tried taking Genistein for a little while, but my most recent CBC results completely freaked me out - above-normal ANC and some detectable immature Neutrophils surfaced some significant anxiety while I waited for the rest of my bloodwork to return. However, FISH = negative and PCR = 0.011% IS [still trending down], so I guess I'm still okay and the floor didn't drop out from under me. So no more Genistein, but I am going to continue taking a Vitamin C pill with my morning Gleevec 400mg dose.
Regardless, I'm still curious if anyone has explored this particular supplement.....
Dan - Atlanta, GA
CML CP Diagnosed March 2011
Gleevec 400mg
New Member
Posted 29 January 2014 - 07:13 PM
You've always got to be careful when trying supplements. I'm having another go at using Curcumin, I've had joint pain for a month or two now. Can't blame the Gleevec. I'm trying it at the lower dosage recommendation. If I wind up with bruises again, I'll know it isn't for me, I'm also on high strength Fish Oil for the cholesterol (which is also a blood thinner). And if it doesn't help with the joint pain, I might get checked out for Ross River Fever.
Advanced Member
Posted 29 January 2014 - 10:04 PM
It would seem that this stuff would need to be injected directly into the marrow to work. So next time you have a BMB have the doc shoot you up through the new hole in your arse and see what happens. Shoot some curcumin in while you are at it.
Some of the CML TKI drugs mildly inhibit EGFR. I wouldn't want to inhibit EGFR any more than CML drugs do. In fact, I really wouldn't want to inhibit it at all if possible.
Some things that work in the lab do not work in the body. That is because the stuff cannot get to the desired point in therapeutic quantities without mucking around with good parts of the body. Side effects city. This is probably one of those cases.
Those Parma folks like to muck around with weird stuff. That's OK....they could someday be that blind squirrel finding a nut.
New Member
Posted 29 January 2014 - 11:53 PM
You probably should have an enema before getting a shot of it through the new hole in your arse - wouldn't want to waste it.
Advanced Member
Posted 30 January 2014 - 08:11 AM
I guess it's possible, but I've decided to stop my combo-therapy "trial of 1" with Genistein. That injection method doesn't sound like a lot of fun, so I think I'll pass. I still haven't calmed down after my latest CBC result. While I was taking it, however, my PCR did drop from -3.4 log to -3.96 log in three months ... so maybe it was making a difference?
@GerryL - Good luck with your Circumin regimen. How much are you taking daily, and do you take it with your Gleevec dose, or at a different point of the day? I still have ankle joint pain from my surgery a couple of years ago, and I'm desperately trying to add running back into my road biking routine, so I wonder if Circumin could provide the dual-benefit of controlling pain/inflammation while helping to beat down CML a bit further.
Dan - Atlanta, GA
CML CP Diagnosed March 2011
Gleevec 400mg
New Member
Posted 30 January 2014 - 07:03 PM
My initial blood test since stopping was negative, so not back on the Gleevec at the moment. I've found I've had pain in my finger joints and knees hurt a bit when I'm using my stationary bike, hoped it would go away when I stopped the Gleevec. I've been off the Gleevec for 10 weeks now, no improvement in the joint pain, so can't put it down to that.
I've only started using the curcumin so can't comment whether it is working or not. I had bruising the last time I tried it, so am taking the lower end of the recommended dose. Will check tonight how much that is.
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