I voted no, I don't think it is necessary I have been a member of this board for 5 years and I feel that everybodys questions are all answered because of all our experiences. CML affects us all differently, we all get different crazy side-effects and just because one person has chronic diahrrea doesn't mean every one else will get it, sharing how we deal with these problems is one of the reasons this board exists.
As far as dose reduction goes or even tki cessation goes that is all new territory. To all our newcomers you have been through the worse time of your life, and yes we do get side-effects that are hard to get used to or just plain don't work but thankfully there are more tki's available now that just about everybody responds to. I was dx 2007 the only tki available to me was Gleevac so I had to take it for 3 years, because of other health problems and medications I was on I was sick all that time. I never even knew this board existed until nov 2010 I was not told anything about my disease except how lucky I was because they now had a drug G and all I had to do was take a pill a day for the rest of my life and I'll be fine because I had the silver bullet.
There is to much talk about going off your meds as soon as you reach pcr, You have been falsely led to believe that as soon as you
reach pcr for a couple years you'll be off meds that is not true and if you are thinking of trying to do it you are playing russian roulette with your life. It's not just a matter of well if my numbers go up again I just go back on the meds. Nobody knows if that will work or not. The meds are too new and only your doctor can guide you in you're treatment. I would hate to see anything happen to anyone because this seed has been planted.
Scuba, Michael, whatever when you get your masters degree from I cured cancer university I'll listen to you. Don't respond to this and I apologize if I offended you but I feel it had to be said. Billie
Billie - You invite response even though this thread is the wrong spot for your attack on me - perhaps you can start a new thread.
"There is to much talk about going off your meds as soon as you reach pcr, You have been falsely led to believe that as soon as you
reach pcr for a couple years you'll be off meds that is not true and if you are thinking of trying to do it you are playing russian roulette with your life. It's not just a matter of well if my numbers go up again I just go back on the meds. Nobody knows if that will work or not. The meds are too new and only your doctor can guide you in you're treatment. I would hate to see anything happen to anyone because this seed has been planted."
A few years ago - not that long ago actually - there was no talk about stopping TKI therapy without risking very bad things. The thinking was full dose no matter what was the protocol despite the bad side effects. Then they learned that drug reduction can work. And then "stop" trials were started and more and more data was and is being collected to show that cessation can work - in as many as 40% or more patients. And the data is showing rather convincingly that even if restart is necessary after losing MMR progression free survival is resumed. This is not my opinion out of the blue. This is what is being reported. My own personal trial is not being done blind. Dr. Cortes, a renowned, researcher in the field is monitoring what I am doing. If the risk to me was high he would have condemned my approach refused to have me as his patient and otherwise tell me I have a death wish. Instead I am part of his dataset regarding cessation. I share what I am doing and how I got here because I thought people on this forum would like to know.
But I suspect that is not the point of your attack on me. I believe you feel that opinions of my type and what I have learned and applied should not be posted in this forum. That it will give people false hope or misdirection and falsely lead people to a wrong path. I can't imagine that this forum exists only for people to express "correct" thinking that is approved. Perhaps posts should be filtered by a committee appointed by experts?
I have had a very rough start to CML when I was diagnosed. Gleevec didn't work, my bone marrow was a mess and I had severe disease. I was borderline accelerated phase with all kinds of chromosomal abnormalities. My first doctor just wanted me to do more of the same and had no experience outside of his current practice. He simply didn't know about other approaches.
This forum was and is a terrific resource to learn what others were experiencing and thinking. All of the ideas - with pros and cons and debates is what makes this forum so useful and helpful . What I did was read, learn, study and apply. I shared my journey on this forum as so many others have and highlighted how I feel along the way and what I have done. I have NEVER used the word CURE. So i do not have a degree from "cured cancer university". And we have already seen how many "doctors" are misleading their patients with poor treatment. You wrote, "only your doctor can guide you in your treatment". If that were true, then Trey should hang up his shingle. He has more insight to what doctors should be doing in order to properly treat their patients than many of the doctors who are licensed to treat CML. I will never follow a doctor blindly. But that's me. Others have to do what makes them comfortable.
Regarding the original point of this thread - I have no vote. Either way is fine. I see merits to both arguments.
By the way, Billie, consider shiitake mushrooms! Great for your immune system. Another reader on this forum sent me a private message on these mushrooms. Very impressive when I read up on them. I eat them regularly now. Yum.