10 replies to this topic

[ChrisC]

HI Everyone,

I am happy to report, for those interested in hearing about my being off all TKIs since September 14, 2011, after being PCRU for two years, that at my appointment today with my Onc I was shown the reports that all of my CBC and CMP levels are completely normal. And . . .

. . . I am posting my actual PCR test result, as I'm too proud of it to just write it out! My last PCR test was unreadable or something, so my last PCR result was in June 2012, prior to Quest Diagnostics' switch to IS (Int'l Standard) reporting. There was a concern that perhaps with the new reporting in IS, there might be something measurable, but in fact I have tested, by Quest, 0.000 since September 2009, after four months on Sprycel (preceded by seven months on-and-off Gleevec). I was dx'd in October 2008 with WBC 459k.

Whew! Thanks for the ongoing support and interest This situation is amazing to me. I may raise my hand and report at the CML conference in SF on Feb. 9th, just to share how amazing the treatment of CML is becoming for those of us fortunate enough to respond fast and well. Wishing perfect health to each and everyone!

ChrisC

[mariebow]

Great

[Antilogical]

WOOHOO!

[ChrisC]

In a related item: When I got my most recent PCR test, the tech said the BCR test [PCR] was in a pink tube; I mentioned that previously it was always in a lavender tube, and would he please check. The answer came back to use a pink tube. Then I saw their reminder list on the wall: "two lavender = 1 pink."

Also, recently I read the interesting notes someone posted from the recent ASH conference: http://www.cmladvoca...report#stopping

Of particular interest to me was in the section about stopping TKIs: "After 36 months, 39% of patients maintained complete remission, but 61% had to start therapy up again. Most relapses happened very quickly, in other words, in the first seven months after treatment was ended. However, there were also later relapses, in months 19, 20, and 22. The PCR often rose very quickly in just a few days, so CML was returning with force. The Australian CML8 STOP study, presented at the ASH conference by Dr. Susan Branford, showed similar results. The good news is that all "relapsed" STIM and CML8 patients once again responded to therapy."

Today at my appointment I read this paragraph to my Onc, pointing out that my corresponding months (19-22) were coming up, starting with 19 months off Sprycel in April 2013. He has scheduled my next PCR test for mid-April and my next appointment with him at the end of April. Nice. He mentioned that he appreciated that I was staying on top of the literature. Thank goodness for our many CML message boards.

ChrisC

[TeddyB]

Great news ChrisC, keep us updated

[Trey]

The specimen tube color shows the additive used to help preserve/stabilize the sample.  Lavender and pink top tubes both use ethylenediaminetetraacetic acid (EDTA) which is the correct additive for PCR tests.  So either can be used.  Some pink tubes may be larger than lavender (but not universally true) for extra specimen collection.

[Pin]

Wow Chris - hopefully this means you are in the 39%!

[ChrisC]

Only time will tell. I'm still in the same boat as everyone else is, as far as waiting for PCR test results . . . and I will be, either until there is a test to confirm that the mother stem cell is deleted, or until there is some other breakthrough. Until then, we all will be tested regularly for the rest of our lives, and will wait as calmly as we can for the results. I count the current test results as a huge blessing, not a given. And I am wishing for beautiful results for every one of us.

On another subject, it turns out that I won't be able to make it to SF for the LLS conference on Feb. 9. I look forward to hearing about it from anyone who is able to go. Thanks!

ChrirsC

[threedprof]

That is wonderful news, Chris! Congratulations on the repeat negative tests!

[GerryL]

Hi Chris,

I agree about the calmness - when I stop in October, I'll be doing my best to remain stress free. For me, stress plays a bit of a part in maintaining PCR levels.

[ChrisC]

Wonderful: October will be here before you know it! Have fun !

ChrisC