Curcumin and Hedgehogs
Posted 06 May 2015 - 09:16 PM
Posted 06 May 2015 - 09:46 PM
Nicely written Michael. I could probably be one of your top cheerleaders or stalkers because I am always searching out your posts. It might not be something I can do but you might find a combination that helps the body in general. Any help is going to be a good thing.
Note: no disclaimers
Posted 06 May 2015 - 10:05 PM
I have been on a tki since my dx seven years ago, I never knew this site existed or any type of support system. Guess I'm a late bloomer I guess that's why it took me 3 years to find this wonderful site. I thought Gleevac was the only med available, after reading this board for about 15 minutes I discovered they were coming out with 2 new drugs. I was so sick from the G I begged my onc to change my med, which he did he put me on 100 mg Sprycel which worked great for me, And the strongest dosage was given to all of us. There was no talk about lowering our dosage on any new meds.. So some of us went through the crappy side effects and others had no problem at all. After a couple years the oncs started lowering our dosages it's great I have gone from 100mg down to 50 mg and now I take 20mg and I have been undetectable for four years.
For all our newcomers please be patient, especially those who just were dx a few months ago,or even a couple years ago.
Posted 06 May 2015 - 10:59 PM
Increasing dosage won't work, I know of someone from a trial here in Aus that was on 600mg Gleevec, had two years PCRU and the CML has returned within the first three months.
If you ask Pam or myself (or other members of the FB site I'm on) why we can stop the answer is neither the docs or any of us really know.
I put it down to the immune system getting control of the CML, but why this works for us and not others, don't know.
Posted 07 May 2015 - 10:04 PM
Posted 08 May 2015 - 05:59 AM
I was also concerned about the long term use of the TKIs, it took around 14 months before all the side effects disappeared for me. I'm grateful for the TKIs, but hope they come up with a cure sooner rather than later.
Posted 08 May 2015 - 06:11 AM
I was trying to make a less is more, or can be more, argument, but I understand what you're talking about. I definitely have a love hate relationship with the term idiopathic. Science knows more everyday, but there is so much left to go.
I reread your comment - dosage will hopefully come down to an individual requirement. I dropped to 300mg Gleevec after a year PCRU.
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