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Shortness of breath

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#1 Kali


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Posted 20 December 2016 - 09:44 AM

I have read past posts about shortness of breath.
I am on Sprycel 100mgm per day since July 2014. Reached MMR in 3 months and have been undetectable or near undetectable for about 9 months at least.

I have been getting shortness of breath even with SATS at 98 and heart rate in the 80's or 90's.

I have one lung since 1977.

Last exam internist said my air was moving very well but did a lung exray to doublecheck everything.

He called back and said I either didn't take a deep enough breathe or I have a very small pleural effusion. I have never had anything like that before In my life.

I called onc and he will have me checked with exray in a month again. Otherwise, he said just keep taking my TKI.

He is a nonbeliever of reducing dose which concerns me. He thinks mutations can happen.
Some of you explained this is old school.

He is a believer in cessation completely in the future if I am eligible.

If this turns out to be pleural effusion and his solution is steroids, water pills and inhalers, who is the best CML expert that I can go see for second opinion. If I have to take off work and fly there, I will.

If the lung exray is clear, why do some struggle with shortness if breath on the drugs?

Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%

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