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Three month BCR/ABL results

I have been on imatinib for three months after initial diagnosis. My original test indicated 95.07. The most recent was 90.15. The doctor said our goal was 10% however, we agreed that no matter, we would continue on the 400 mg of imatinib until February.  All other blood test results are normal. I have had no side effects from imatinib and have energy as I had before being diagnosed.

I would appreciate any insights or experiences of others at this early stage of CML. I  am a 72 year old female, if that has any impact.

Thanks so much. I read this forum daily and appreciate the professionalism and intellectual way that topics are presented and addressed.

Hi there,

10% at 3 months is what is described as an "optimal" response. At 6 months, this shoudl be 1%. Your overall goal is to get to 0.1% or lower.

Your starting point of 95% is pretty typical, so you really should be a good deal lower than 90%. However, if your other blood counts are indeed normal that is what is called "Complete Haematological Response", which with a result lower than 95% is considered a "warning".

All of that is against the European standards: https://www.leukemia-net.org/content/leukemias/cml/recommendations/e8078...

A few questions which will help us understand your situation:

  • Where are you being treated and do you know if your doctor is a CML specialist?
  • Did they perform a bone marrow test?
  • Did you discuss what would happen next, if your results don't go down significantly?

David.

Yes, my doctor is a CML Specialist, Dr. Harry Erba at Duke Hospital. No, I did not have the bone marrow test, just blood. My Sokal score was 0.8, EUTOS very low, and all my blood tests normal when diagnosed. The WBC was 20,000 which was the only indicator.

We determined that we would continue the Imatinib 3 additional months, no matter, as I am handling it so well. At that time he said we could increase the amount or go to another drug.

I appreciate your quick response, needless to say, I was very disappointed to receive the results.

Not everyone is treated in the same way. I have learned that older patients in the UK are more likely to be treated as a starter drug on imatinib. Older patients are more likely to have other maladies such as high blood pressure, diabetes, breathing issues and heart issues. I have been told that imatinib is the lower risk TKI. Of course, the other TKIs are available if needed. I am 63.

At diagnosis, I had my bone marrow taken but this was not tested. It was put into storage in case it is needed in the future.

My blood Ph+ (FISH) at diagnosis was 92%. My BCR-ABL1 was not tested. I was told that until FISH is 0%, FISH trumps BCR-ABL1.

All of my tests so far have placed me in the "warning" category. The consultant is looking more for a downward tend rather than insisting upon meeting targets. My consultant is not at all alarmed.

For my part, I am on a plateau now. At 15 months FISH is 0% [good!] but BCR-ABL1 is stuck at 0.5%. I have my next test result on Friday and I will move to dastatinib if I remain on a 0.5% plateau.

Some posters may report incredible results at 6 months. They are the super-responders. Be careful not to benchmark yourself again their results. The consultant will take many factors into account in deciding the best treatment.

I think you are right. When discussing treatments, we considered high blood pressure-which I have, and heart problems that are in my family. My doctor also mentioned the positive downward trend so that must be significant enough not to switch me to another drug immdeiately.

Please explain the "warning" category to me. 

I think I am most diasppointed because I feel well and typically respond quickly to all meds and treatments. I wanted to be a super-responder.

Good luck on your test this Friday and thank you for your reply. 

“Warning” basically means, “be vigilant, consider other options, but you don’t necessarily need to do anything right now”. The next formal category is “failure” which really means action needs to be taken now, such as switch to another drug. “Failure” just means that the current treatment plan is not working, it doesn’t mean there is no hope for the patient - far, far from it.

They are big words, but as others have said the downward trend is the most important thing. The guidelines are just that - guidelines. Other factors come into play, and it certainly is true that imatinib is the most “gentle” of the TKIs (though for some people, me included, it is anything but). But when you look over a large number of people, imatinib has the fewest high grade side effects and it has the most data behind it. It is certainly the least hard for cardiac issues, and there is some (not massive) evidence to suggest imatinib can actually be cardio-protective in some ways (says my haematologist - I don’t know to what exactly she was referring to). 

Some people do respond super quickly, and others are relative tortoises, but there’s no evidence to suggest that faster responses give a better long-term outcome. Getting to 0.1%, however long that takes, is the goal really. Having spoken to many eminent haematologists over the years at conferences, some will tell you that under 1% is in all likelihood not a bad place to be.

David.

Thank you so much. Your explanation has given me tremendous comfort. It is such a frightening situation in that with most medical issues you have several friends who have been through the same or know someone who has. With CML, I feel like there is no one-other than these Forums- that can provide any insight into what I’m going through.

I appreciate the timeliness of your responses too.