Stopping Imatinib in CML: Safe in the Long Term for Deep Molecular Responders As the Immune System Steps Up
Started by
gerry
, Jun 20 2017 05:29 PM
3 replies to this topic
#2
kat73
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Posted 21 June 2017 - 10:04 AM
Wow, Gerry, thanks! Short and mighty sweet! SIX YEARS of followup yields a very significant story. Now, we have to figure out how to raise that lucky 38% to more people.
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.
#3
gerry
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Posted 21 June 2017 - 05:18 PM
A number of us on a TFR FB site were carers. For us it appears the high level of stress impacted our immune system and allowed the CML to rise. It isn't the reason for most CMLers and as someone reminded me some people thrive on stress, that wasn't me. They appear to be on the track for looking at the immune system, which for me is where the cure lies.
#4
kat73
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Posted 22 June 2017 - 11:09 AM
I'm convinced chronic stress is a huge health-breaker.
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.
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