Update - My numbers are getting better
Posted 04 December 2016 - 04:28 PM
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)
Posted 04 December 2016 - 05:19 PM
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Posted 04 December 2016 - 06:50 PM
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)
Posted 04 December 2016 - 06:59 PM
We've seen a year of high level stress affect one of our members who had been TFR and negative for over 4 years have the CML return. My personal belief is that for a small number of us stress was the key factor in CML making an appearance. There are a number of ex carers in the TFR group.
I have discussions with my doc about this, he isn't exactly on board, but then again he doesn't dismiss my theory outright, since he doesn't have a better one to explain it.
I don't think it is the reason for most CMLers, as something else may have gone wrong with their immune response to the mutant cells.
Posted 05 December 2016 - 11:01 AM
It seems plausible. We know stress affects the immune system - this is a documentable fact - and we think the immune system may be implicated in the onset of cancer. It's plausible. We wander in the wilderness of mystery. Even with all our science, I suspect we will never solve the death thing. A mystical force or intelligence - God? Mother Nature? - demands that all things living must die. I am continually amazed at the trillion different ways (he/she/it) finds to accomplish that. We discover TKI's, but the stem cells remain impervious. The unintended consequences of hitting healthy cells for decades may also turn out to be lethal, eventually. We try chemo - cancer mutates. We try immunotherapy - people die of autoimmune crisis. And no one can figure out how to prevent cancer because cancer itself is tied too closely to how all cells are created and live. But back to stress - I do wonder about people who get to 102 - are they perhaps blessed with a body that doesn't process stress like the rest of the population?
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
Posted 05 December 2016 - 05:10 PM
1 user(s) are reading this topic
0 members, 1 guests, 0 anonymous users