44 replies to this topic

[threedprof]

Did they figure out what caused your liver enzymes to become elevated?  Was it the Crestol?

[dpass]

I guess one can't be sure, but the onc's opinion was that it was Gleevec that caused the elevated liver enzymes.  In the two years since, while on Sprycel, I have not had a single incidence of above normal range of AST/ALT while my Crestor was increased to 10 mg/dy some time ago. I believe common opinion is that one could return to Gleevec after an episode of increased liver enzymes and brief Gleevec vacation, without further incidence of increased enzymes.

[valiantchong]

Do you intend to have another Stop TKI in the future ? or any discussion with your doctor that lowering dosage with such an fast re-occurance experiece is advisable and how safe is it ?

[rshams]

I am in major shock.  My doctor told me today I could stop taking Gleevec, but it was my decision,  I was first Dx 1993 at age 16, had a BMT from a sister, then 11 years later it popped up again in blast phase, another BMT, and I've been on Gleevec 400 and in BCR-ABL remission ever since. ( Forgive my lack of proper terminology.) I feel very fortunate, I do suffer from frequent daily nausea and edema around the eyes, but I've learned to deal with them.  I"m scared to do it.  Ironically, I"m losing some of my health coverage and my Gleevec bill will be going up to $6000 OOP next year.  But to stop Gleevec just because of the expense, at the risk of going through active CML a 3rd time, well, I would appreciate your suggestions and thoughts. Thanks.

[valiantchong]

I think, you have 2 options now, base from your feedback you would like to continue your medication but on the other hand you are losing your coverage.

If you could afford and dont mind the side effect you will need to pay and continue your medication so it is the current safest choice.

If due to affordability, I think you may wan to consider to reduce your dosage but need to be closely on PCR so that you it will be less burden on the medication and you will have less side effect.

On the ground of stoping medication, you will need to ask the protocol of monitoring with your doctor and if he has already patients doing it safely under his practice. I think one need to be very carefull and if the doctor confident enough to able to detect any progression fast and remedy it before too late.

On what ground he thinks you are safely to discontinue medication and is he an experienced doctor ?