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PCR 24% but cant get lower

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Ive been on Sprycel for 2 years. The first year I got down to 9% pcr levels and then my platelets started getting low. I did a bone marrow biopsy and I didn't have any mutations and no more blasts so I'm still in chronic phase. The doctor said I was just sensitive to sprycel at 100 mg per day. We found a the right dose at 25 mg per day and I'm good and jogging and back to normal life. I feel great. the problem is my pcr levels just wont go any lower than 23%. the problem is if I switch TKIs I might be sensitive to those as well. So I'm just staying on sprycel for now. I may up my dose to see if I can get my levels down. but at least my disease isn't progressing. any experience with this?

 

HI John,

Sorry for this late replay as I missed your post. I have a few questions:

1. Where are you being treated? Is it s regional CML expert centre or a District General Hospital?

2. Does your clinician express any concern that you are still 23% positive after 2 years TKI therapy? 

3. Is your result from a PCR test or from cytogenetics/FISH test?

4. When you say you are 'sensitive' to Sprycel, I assume you mean you have trouble tolerating the drug at the recommended dose. Is this correct?

Acording to the current European Leukaemia Network Recommendations for treating CML, you should have reached the following milestones to be sure of an optimal response to TKi therapy and to protect yoy from risk of progression to AP and/or BP:

BCR-ABL1 transcript levels

less than 10% at 3 months,

less than   1% at 6 months, and

less than   0.1% from 12 months onwards,

define optimal response, whereas 

10% at 6 months and more than 1% from 12 months onward define failure, mandating a change in treatment.

I advise you to urgently talk with your doctor about these ELNet recommended treatment milestones and your changing to another TKI which may be more effective in your case. A second opinion might help.

Sandy

 

 

As a quick positive note, optimal response has an impact on your ability to eventually come off TKIs but doesnt seem to effect long term remission.

However I agree a plateau at 24% might be worth asking a few questions on. The latest DESTINY trials seem to show us that everyone can live with a bit of cancer but maybe not 24%