168 replies to this topic

[threedprof]

Okay folks, this is it!  After my blood draw today (counts are still all good) My Onc and I feel confident we'll get another negative marking this one at five full years of unwaivering PCRU tests .  This time we've been instructed by Dr. Druker (he knows what we're attempting and has given his approval) to send it to OHSU for a third lab verification.  After careful consideration and LOTS of reading I will reduce my dosage starting today to 200 mg of Gleevec.  My normal test schedule has been bumped up from six months to three, to make sure we're on top of any changes. I will keep you all informed of my situation.

Joel

[mikefromillinois]

Good luck Joel.  Safe journey...

Mike

[Happycat]

Joel,

Ooh!  Interesting and so exciting, too!  Keep us posted, would love to know the outcome. Let us know the in-between stuff, too.  Like how you feel on 200 mg vs 400 mg gleevec.

Traci

[threedprof]

Thank you, Mike!

Traci: That's the most exciting thing i'm looking forward to is how i'll feel on the lower dosage

[jjg]

If anybody is wanting to go the other way, increasing by 200mg, firstly you're crazy and secondly I've found a  big (sucky) difference in going from 600mg to 800mg. My point being is that the extra 200mg has an impact so one would hope that 200 less should also have a big difference. It took about 2 weeks for my body to really get that it was taking more drug so you might not feel fantastic in the first day.

[Dina36]

Wow thats awesome, please keep us posted and wishing you all the best.

[Tedsey]

Best of luck!  Yes, keep us posted.  Here is to PCRU for decades and decades until you are very old and gray.

[Trey]

I've been on 200mg Gleevec for 3 years now and have never lost PCRU.

I would not have used the title "TKI Cessation" since what you have described is actually dose reduction for long term Minimum Residual Disease status.

[threedprof]

Tedsey: thank you! I'm looking forward to gray hair.

Trey: I titled it accurately. My journey is inclusive of dose reduction until six months then finally completely stopping.

[Trey]

OK, so you are actually reducing dosage for 6 months, then stopping completely.  What is the plan if you become PCR positive?  Restart TKI immediately at any positive PCR, wait for several positive PCRs, or see if you maintain MMR over the long term and live with positive PCRs unless MMR is lost? 

[threedprof]

Trey: After carefully reviewing all the documented scenarios I will be going back on Gleevec after a year of failed tests, depending on how severe the upswing of the trend goes. If it looks as though I plateau in a low level MMR then I'll keep monitoring at three month intervals for a year.

[Jamar]

How long should you be PCRU before decreasing your dosage?

I am going on 9mos at PCRU But I assume you need to be PCRU for a couple years, right? 2 or 3 yrs?

[threedprof]

Jamar: there are more qualified people here to talk about this but i'll repeat what i've heard.  The studies from France and UK's stop imatinib program have required their candidates to be at least two years PCRU.  Congratulations on your status!

I've started taking three doses of 1200mg Equaline brand Omega 3 (360mg per softgel) and one Sundown Naturals High Potency B12 500 MCG pill, daily.  We'll see if that helps to eliminate the remaining progenitor cells.

[Rissa]

Joel,

Good luck to you!  I think you're very brave.  Please keep us posted.

Rissa

[pamsouth]

Thank You I will be following you on your journey.

PamSouth

[Jamar]

so 3600 mg of omega 3 per day?

How quickly do you go through a bottle of omega 3 pills?

[threedprof]

Jamar: that'd be correct.  There's 100 pills in a bottle so I figure i'll be going through a bottle every month and some odd days.

[LivingWellWithCML]

Hey, this is great.  Good luck!

What's the rationale behind the Omega 3 + B12 supplements?  I've been following the Curcumin threads, but I'm curious what your thinking here with regard to eliminating "the remaining progenitor cells" ...

[threedprof]

Dan: Thank you for the support!

there is research being done showing some possible positive effects of an extract of Omega 3 against CML.

Here's a link: http://community.lls...e/128435#128435

whether it works or not remains to be seen. The B-12 supplement was to help bolster my system to fight against nasty mosquito bite reactions.  However, since i've been reading up on B-12, it appears to be a myth so I may cease taking the B-12 since my tests don't show low levels of it.

[LivingWellWithCML]

Ah yes, now I remember that research -- thanks for sharing.  That is something that I've been meaning to try as well.  I had a huge piece of salmon for dinner tonight though.  Does that count? :-)