Hi everybody,
I am more of a "lurker" these days on the CML forum than a participant, and I have been a turtle since March 2014.
Here are my results the last few years.
PCR results and advice for a turtle like me!!! ;)
Started by
acl
, Jun 16 2017 12:08 PM
5 replies to this topic
#1
acl
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Posted 16 June 2017 - 12:08 PM
Diagnosed March 2014
Imatinib 400 mg. Summer 2014, Imatinib 300 mg.
% BCR-ABL
IS-NCN
06/01/16 0.18%
24/02/16 0.11%
23/03/16 0.13%
12/05/16 0.07%
13/07/16 0.17%
12/09/16 0.12%
21/19/16 0.15%
23/11/16 0.09%
20/12/16 0.11%
19/01/17 0.07%
21/02/17 0.07%
20/03/17 0.06%
20/04/17 0.06%
20/05/17 0.07%
20/06/17 0.06%
23/08/17 0.08%
22/12/17 0.04%
#2
hannibellemo
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Posted 16 June 2017 - 01:46 PM
Hi, acl! You are a turtle at MMR! I suppose if you wanted to stop being a turtle you could switch to a lower dose Sprycel, maybe 50mg. But if being a turtle doesn't bother you and you are happy with imatinib I wouldn't switch. If you start to experience a steady upward trend instead of an up/down, remain the same (repeat) trend I would consider switching more seriously.
I never expected to get to PCRU (and with Mayo's change in reporting I may find I'm no longer there). I would be happy to remain a low positive. There doesn't appear, at this point, to be an advantage to being PCRU over MMR, or even, CCyR. (Except the opportunity to stop the TKIs.)
Enjoy the summer!
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>
#3
kat73
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Posted 16 June 2017 - 03:17 PM
acl - Looks like you've got that most excellent "zero to the right" pretty solid. Maintain! Way to go!
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.
#4
scuba
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Posted 16 June 2017 - 04:27 PM
Agree with Pat and Kat above ....You are at MMR .... excellent place to be.
Your decision now is if you have any side effects that bother you, should I switch drugs to get rid of them.
If you have no side effects that bother you .... you're fine.
if you do have side effects that are bothersome, you could consider changing to low dose Sprycel (20-40mg) and likely see a step drop in your current PCR level (maybe even PCRU) as well as eliminate side effects. Gleevec turtles do very well switching to Sprycel (M.D. Anderson, pers. comm.). The key point is this would be switching to Sprycel at low dose for maintenance purposes, not switch drugs at full dose.
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"
#5
Trey
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Posted 16 June 2017 - 07:00 PM
The number of PCRs you show might lead one to conclude this is over several years, but it is less than one year. You would likely continue to slowly drift lower if you continue on the current course.
Among those who started the original Gleevec trials in 1999 there were many who drifted slowly lower over many years, and quite a few eventually reached PCRU or close to it.
You could change drugs and see if that accelerates the drop, or you could continue to drift lower.
#6
acl
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Posted 17 June 2017 - 06:51 PM
The number of PCRs you show might lead one to conclude this is over several years, but it is less than one year. You would likely continue to slowly drift lower if you continue on the current course.
Among those who started the original Gleevec trials in 1999 there were many who drifted slowly lower over many years, and quite a few eventually reached PCRU or close to it.
You could change drugs and see if that accelerates the drop, or you could continue to drift lower.
Trey, Hannibellemo, Scuba, Kat 73, Thanks for your responses, they are very helpful.
acl
Diagnosed March 2014
Imatinib 400 mg. Summer 2014, Imatinib 300 mg.
% BCR-ABL
IS-NCN
06/01/16 0.18%
24/02/16 0.11%
23/03/16 0.13%
12/05/16 0.07%
13/07/16 0.17%
12/09/16 0.12%
21/19/16 0.15%
23/11/16 0.09%
20/12/16 0.11%
19/01/17 0.07%
21/02/17 0.07%
20/03/17 0.06%
20/04/17 0.06%
20/05/17 0.07%
20/06/17 0.06%
23/08/17 0.08%
22/12/17 0.04%
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