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#1 snowbear


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Posted 11 January 2017 - 06:37 PM

I have been on Gleevec 400 mg for two years and hit a plateau with BCR-ABL between 1-5% before jumping to 7.5%. Doc increased the Gleevec to 600 mg two weeks ago. She thinks I may have a resistant clone but she wants to try the higher dose before switching to Bosulif. She will not consider Sprycel or Tasigna because of heart and lung toxicity.

BMB in December also showed mild fibrosis but only 1% blasts and no mutations. My doctor ordered ultrasounds of my spleen, liver and kidneys which I had today. My bloodwork from last Friday showed WBC 7.5 but high 80-ish % of neutrophils to lymphocytes, plaetlets over 500, low RBC, high RDW and anicytosis. LDH increased to 280.

I am getting scared. Is this showing disease progression or can it be brought back to normal with med increase or change? I don't want a transplant.

#2 Trey


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Posted 11 January 2017 - 06:59 PM

Mostly the CBC is not very definitive about status of the CML, but your CBC shows a clear acceleration of loss of response.  The very high neutrophil % is a problem.  It should be the other way (high lymphocyte %) when we have low counts due to the TKI drugs.  Also the high PLT is a problem.  You need to switch to another drug, regardless of what any Onc says about concerns over the drugs.  Or Onc should try Bosutinib if she is so concerned about Sprycel and Tasigna.  But a switch in drugs is absolutely necessary, and quickly.

#3 Jan0080


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Posted 11 January 2017 - 08:28 PM

I have a lung condition, hypersensitivity pneumonitis that affects the diffusion (transfer of oxygen from the lungs to the blood stream).  My Dr started me on Spycel which this is my 5th pill taking day.  Just diagnosed Dec 27, 2016.  A big question has been whether the Immunosuppressant was the culprit (CellCept)  Apparently they don't think so and I may be re-starting that next week.  This has been a wild 4 weeks for me but if I am going to get Cancer, I guess this is the one that I want (like I had a choice). Snowbear, I know that trey is the expert here.  Listen to him.  Try to get on Sprycel or whatever.


Good luck!

Diagnosed Dec 27, 2016 started Sprycel 100 mg Jan 7, 2017. Initial PCR 77.9 after 30 days 28.4, day 79 1.4 and day 115 0.1%. That is a 99.9% reduction! Sprycel 100 mg for 3 months, 80 mg for 1 month and now at 50 mg. Hooray for Sprycel!!! PCR June 5, 2017 0.04! Dose reduction to 40 mg 6/15/2017 due to shortness of breath. 20 mg as of June 29th. PCR .02 9/11/2017. PCR .015 IS as of 12/11/2017. Lungs substantially better. Low dose Sprycel works!

Adverse Effect - At about week 6 of Sprycel sharp muscle pain that would start at 2 AM and last for about 4 hours. This lasted about 4 weeks and went away, thank goodness.

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