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Posted 27 March 2017 - 03:12 PM
No surprise here ...
http://www.cancerthe...article/646688/
"Likely PH (TRPG > 31 mmHg) was most common among the dasatinib group (13.2%) followed by nilotinib (10.0%), and imatinib (2.7%), though these findings were not significant. Of these 6 patients, 3 were asymptomatic."
Just reinforces the idea that dose reduction should be a goal in CML treatment - especially with Sprycel and when patients have otherwise excellent PCR response.
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
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Advanced Member
Posted 03 April 2017 - 06:04 PM
Well, isn't this just DUCKY. I go in for my echo in a week or so. I may be paranoid, but it seems to me that there are an awful lot of scary things popping up now that we move into the second decade of TKI treatment. There was nothing but happy talk a few years ago - normal lifespan, etc. Just keep taking the pill forever. Now we're finding we can't keep taking it! Pleural effusions, PAH, vascular events, and more. I also thought this dragon was slayed: a long time ago I asked if mutations and resistance and progression to blast could happen even while taking the TKI and was roundly reassured, NO. Now? Sounds like, YES. I'm just a leetle piqued right now.
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.
Advanced Member
Posted 04 April 2017 - 07:55 AM
kat,
I'm not alarmed by the state of our TKIs. There will always be a small percentage of those of us with CML that don't respond, that have horrible side effects and, yes, new side effects will be revealed that weren't during testing. One thing we have to remember is that those of us on a TKI, even though it may be our whole world, are a very, very, very, very small subset of the population as a whole.
Also, those of us who actually post on this board are a very, very, very, very small subset of people with CML.
I don't think the sky is falling quite yet! 
Pat
"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>
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