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CBR Up and Down! Very Frustrating...

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Hello everyone, I wanted to add that this Forum is gold! And I appreciate everyone's feedback and advices, it's the one thing that we have in common and make us understand each other, Thank you!

I have a question hopefully I find someone with a similar story that can enlighten me here.
I was diagnosed 5+ years ago, and started with Gleevec 800mmg , unfortunately that didn't work for my platelets and I had to stop, after that my doctor recommended Sprycel 800 but while the platelets were ok, the BCR was steady, and not changing a lot. I then increase to 100 mmg and went down to 0.115 to 0.03
and I was very pleased with the results, but unfortunately the results change often..
Oct. 2022 0.134
Dec. 2022 0.115
Jan 2023 0.03
Apr. 2023 0.034
June 2023 0.073
July 2023 0.033
oct 2023 0.031
Feb 2024 0.076
Mar 2024 0.104
Apr 2024 0.162

as you can see now is in the up again, I feel great and my CBC are good and so as my chemistry panel , liver function, white blood etc. and I feel a bit fatigued but won't stop me from working, exercising etc, so should I try another TKI or wait? I emailed my doctor and im waiting a response, but not sure what she can say really, we did a test for Mutation Analysis last month and that is Negative/not detected.
Any advice? Please?
Thank you,
Gian

Hi, Gian! You started on 800mg Gleevec and your platelets dropped - I'm not surprised, that often happens in the beginning and generally the dosage is dropped (or Gleevec held) until the platelets recover.

Instead, you were switched to Sprycel, 100mg is the normal starting dose. Your PCR test for BCR-ABL is rising. You are still just above MMR (major molecular response - 0.1%. (BCR-ABL are the two chromosomes that translocate to cause CML. PCR, or "polymerase chain reaction", is the blood test to measure response to treatment.

Your response to treatment is good, but you've had 3 increases at this point and this has been going on for 5 years. You could see what happens with the next test and you could discuss switching treatments based on the next result. I would think nilotinib (Tasigna) would be a good choice. 300mg. 2x/day is the starting dose and there is some dosage timing you will have to deal with.

If your PCR continues to rise I would ask to have mutation testing redone. They are more accurate if the PCR level is higher than yours was in March.
If a mutation is discovered that would help determine which treatment would be best for your situation.

Good luck, Gian, and please keep us posted.

Pat

Hi, Gian! You started on 800mg Gleevec and your platelets dropped - I'm not surprised, that often happens in the beginning and generally the dosage is dropped (or Gleevec held) until the platelets recover.

Instead, you were switched to Sprycel, 100mg is the normal starting dose. Your PCR test for BCR-ABL is rising. You are still just above MMR (major molecular response - 0.1%. (BCR-ABL are the two chromosomes that translocate to cause CML. PCR, or "polymerase chain reaction", is the blood test to measure response to treatment.

Your response to treatment is good, but you've had 3 increases at this point and this has been going on for 5 years. You could see what happens with the next test and you could discuss switching treatments based on the next result. I would think nilotinib (Tasigna) would be a good choice. 300mg. 2x/day is the starting dose and there is some dosage timing you will have to deal with.

If your PCR continues to rise I would ask to have mutation testing redone. They are more accurate if the PCR level is higher than yours was in March.
If a mutation is discovered that would help determine which treatment would be best for your situation.

Good luck, Gian, and please keep us posted.

Pat

Hi, Gian! You started on 800mg Gleevec and your platelets dropped - I'm not surprised, that often happens in the beginning and generally the dosage is dropped (or Gleevec held) until the platelets recover.

Instead, you were switched to Sprycel, 100mg is the normal starting dose. Your PCR test for BCR-ABL is rising. You are still just above MMR (major molecular response - 0.1%. (BCR-ABL are the two chromosomes that translocate to cause CML. PCR, or "polymerase chain reaction", is the blood test to measure response to treatment.

Your response to treatment is good, but you've had 3 increases at this point and this has been going on for 5 years. You could see what happens with the next test and you could discuss switching treatments based on the next result. I would think nilotinib (Tasigna) would be a good choice. 300mg. 2x/day is the starting dose and there is some dosage timing you will have to deal with.

If your PCR continues to rise I would ask to have mutation testing redone. They are more accurate if the PCR level is higher than yours was in March.
If a mutation is discovered that would help determine which treatment would be best for your situation.

Good luck, Gian, and please keep us posted.

Pat

Thank you Pat,
i finally spoke to my Doctor and she also told me that in the scheme of things my test is not bad, could be better but at this point we have to continue monitoring the results, she offer other options, including raising to 140 Sprycel, or switch drug altogether.
I will keep everyone posted, and thank you again for the answer.
G