Hi everyone. I just got back from Chicago where my 9 month bone marrow biopsy and aspiration were performed. This is after 6 months of Gleevec and then 3 months of Tasigna. I must say the first 6 months on Gleevec was a dream compared too that of 3 months on Tasigna. I have experienced so many side effects on Tasigna from mild to severe. So I finally decided at my appointment this week to bring up the idea of lowering my dose from 800 MG a day to 600 MG a day of Tasigna. It would not be a temporary dose change but I see it as if I continue to respond to Tasigna at the new dose than I would forever remain on it. My oncologist was very much opposed to this idea for a few reasons 1.) it goes against the suggested Tasigna dosing guidelines and 2.) if I lower the dose my risk of become resistant to Tasigna is higher. My oncologist has only had patients who lowered their dose temporarily and then worked themselves back up to their original dose.
In the beginning I was on 400 MG of Gleevec and at 6 months I was 50% Philly positive so the recommendation was to switch to Tasigna. I started at 97% and got down to 50% with Gleevec, never really becoming resistant to it just became suboptimal in the words of Dr. Mauro. If I would have just started on Tasigna back in Novemeber I would have started on 600 MG rather than the 800 MG when you switch to it from another TKI.
My side effects lately have effected my QOL enough that I have really contimplated lowering my dose. I know it is a risk and am very aware of what may happen. My oncolgoist is proposing I switch to Sprycel before trying to lower dose of Tasigna. But my thought it why mess up a good thing, I had a 1 log reduction on Tasigna at 6 weeks so why not just test lowering the drug and see how I respond. I find it more risky at this point to switch to a completely different drug. What if I do not respond? and why give up on Tasigna so quickly? She did say I would need to be monitored more closely with a change such as this.
Does anyone know anything about the clinical trials as to why switched drug patients start out at 800 MG rather than 600 MG. Or of studies that show the difference the 200 MG can make?
Has anyone else dropped from 800 MG to 600 MG and stayed at that dose permantly? How have you done? Was it due to side effects or counts? My request comes strictly from side effect issues as my CBC/CMP has all been normal pretty much since day 1 of Tasigna. Sorry this is such a long winded post I just want to know other peoples thoughts. I know ultimately my oncologist will fill my request even though she advises not too it is up to me.