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Still "undetectable"

Hi to all.
I just thought it important to let you know of my continuing good fortune.
I was diagnosed with CML in 2003. At first was put on Inteferon A but has to discontinue after a few months due bad side effects.
My next move was to change my Specialist who put me on Gleevec. I cannot say for sure when I hit PCRU as the test was not available in RSA. My first test after the procedure became available was PCRU. The results continued with a couple of exceptions until April 2009. At this time the side effects were really depressing me, especially bleeding eyes which was now nearly a weekly event.
Having read about the French STIM trials on this site, I made a proposal to my Hematologist to stop my Gleevec routine. He reluctantly agreed as long as I agreed to testing every quarter.
Initially I had two PCRU's, but thereafter lost the Zero status. We continued and found that although I tested Ph+, I maintained a 4 -4.5 log reduction without an upward trend.
My last two tests were back to PCRU. BTW: All my tests since stopping Gleevec are from the same Lab.
The only explanation I can think of is that over time Gleevec assisted my Immune system to regenerate and control my CML on it's own.
Unfortunately we do not have any form of trials here so I have kept all Lab results over the years for reference in future if necessary.
I trust that this information will give hope to newly diagnosed CML patients although results will differ from person to person.

I'm so happy for you Basil & I'm hoping to follow in your footsteps. I've had 2 negative PCR's since stopping my Glivec at the beginning of May - will be having my third test done on Thursday. I'm part of the STIM 2 trial here in France which involves a monthly PCR; I see my Dr every 2 months. Since starting the trial, I've met 2 patients in the waiting room who've both been off Glivec for over 4 years, both of them remein PCR-U & neither had Interferon before their Glivec, so there is hope for a cure!

Hi Barbs,
I am very happy that you have decided to follow this path.
What is amazing in may case is that from a few positive results in-between, I have now had two PCRU's. Please let me know how your trial progresses.
Wow, 4 years that is truly remarkable! I too am of the opinion that Interferon is not the catalyst in a recovery.
I am sure that we will see a cure in our life time.

HI Basil, Hi Barb,

Thanks to you both for your updates on your progress towards a 'cure'.  It is particularly exciting to read about Basil's ongoing pcr's which even when positive were still kept below 4 log- presumably as you say Basil, by your own immune system possibly being 're-educated' by imatinib.... I am sure there will be other theories about why this might be happening but it is very uplifting to hear.

As is the news from Barb that she is doing well so far and that other people on the STIM trial have maintained their negative status for over 4 years. 

Best wishes to you both,

Sandy