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Should I change the medication or change my Hematologist?

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I was diagnosed with CML on July 13th -PCR BCR-ABL was 50.2%

July 29th started on Imatinib 400mg

Sept 2nd BCR-ABL was 21.01%

Oct 14th the copy of the BCR-ABL chart was not clear and the Hematologist understood 17%. She instructed to increase the dosage and take two 400mg.

I was surprised because I have some rash and I am sure increasing the dose will make it worse and my understanding is that you should go from 400mg to 600mg and then 800mg.

But the shock came when I asked for the Test Report and I can see that the result is really 1.7046%, it is not clear on the chart, but it is on the table above, plus the Log Reduction is 1.655.

I sent her an email, she responded that it is great but I should take the 800mg anyway and if I continue to be in MMR (I don’t understand what standard is she using) then go back to 400mg.

I decided to continue with the 400mg and go with another doctor.

800mg of imatinib is an awful lot and would significantly increase the risks of side effects.

You are almost at 1%, which is the optimal target for 6 months of treatment. You've got this in about 9 or 10 weeks of treatment which shows you are responding excellently to 400mg of imatinib.

I see no case at all for increasing above the standard dose of 400mg as you are responding excellently. The benefits of doing so don't really exist, and the risks are increased.

David.

You made the correct decision.

Thanks David for your reply

Thanks scuba, I already found another Doctor and planning to see him next week

How did you find another doctor?  What was the process?  Was it in the same network of providers or a different office all together?  I need to switch doctors, but don't know how to do this.  Are there any issues with insurance?

You can find other doctors,just check with their office and insurance provider to make sure they are covered .Where do you live ?Having a doctor you trust is very important.

You need to check your insurance for a different Hematologist that is in the network and make an appointment. In my case, I changed to a different Hospital, the same Hospital will not give me an appointment with a different Doctor.
The problem is that if you need a quick appointment, probably the best Doctors will not have anything available at the moment, but you have to try if you don’t trust your current Doctor. When we have an appointment, for a lot of these Doctors (at least in the US) it is just another day in the office, but for us, it is our life.       

I had an appointment with the new Doctor and he is a lot better. He said that increasing the dose from 400 mg to 800mg is a bad idea, the medication is working based on the below results
July 29th started on Imatinib 400mg. PCR BCR-ABL was 50.2%
Sept 2nd - 21.01%
Oct 14th - 1.7046%
Nov 7th – 0.608%
And even in case of resistance, he will change the medication to a second generation TKI instead of increasing the dose to 800mg.
The message is that we have to do our own research and question our Doctors when we think they are making the wrong decision.

vlacer, what an excellent result, and what a super decision you made to switch doctors!

Your new doctor seems to know what he is doing. Your previous doctor's decision to up the dose to 800mg sounded crazy. As you said yourself in your post, for some doctors it is just another day in the office, but for us, it is our life.

Now you seem to be in good hands with an understanding doctor, I bet that feels good and reassuring.

All the best,

pigeon.