5 replies to this topic

[JoshLee]

Hello Everyone...And Trey...

     So, I just got off the phone with my doctor and my Fish was run at the Mayo Clinic in Rochester. They tested not 200 or 300 or 400, but 500 cells. They found 4 BCR-ABL positive cells. Which is comes out to about 0.8% or something that. So my Doctor wants me to return home next week and he spoke with some consultants and wants to do another bone marrow biopsy to see if I am still in CCyR and a mutation test. If the mutation test comes up with nothing (a previous one came up with nothing 4 months after I was diagnosed), he wants to increase my dose of Tasigna. Does this sound like protocol? I thought I had read studies saying that there was no difference between the two. He basically thinks I've hit a plateau and while I am not getting any worse, I am not getting any better either. CBC's and smears have all been normal. Just trying to get this PCR to drop. Not as freaked out as I thought I would be. I am actually kind of happy to see 0.8% rather than 25 or 30%. Isn't 0.8 within the error limits? Thanks and any advice is appreciated. Thanks, Josh

[Tedsey]

Feel like you are my brother in the bond, Josh.  I so feel for you.  Keeping fingers crossed for a great and working plan for you and a clean BMB!

Tedsey

[JoshLee]

Thanks Teds!

     It's scheduled for Tuesday morning. I got to CCyR 3 months ago (around 11 months on Tasigna) and my BMB was clean then.....Hoping it has remained that way. I feel that I need to switch to Sprycel!

[Trey]

The false positive rate for the 500 count FISH is about .5%, so technically you are CCyR.  The false positives in FISH are a very real issue because it depends on color recognition, and if two cells overlap with their BCR and ABL separated in different cells, they can actually look connected as a BCR-ABL due to the hue given off.  So I would definitely call it CCyR.  I do not know why the BMB is necessary, but it is a very conservative approach.  I think this should give you the sense that you are doing well. 

"Everyone...And Trey..." wish you the best.

[hannibellemo]

Hi, Josh,

Sorry to tromp all over your post! I also have all my labs done at Mayo (Trey doesn't think much of their 500 cell FISH) and see a doc there yearly now, although that may change because of my PEs on Sprycel. I was told that anything under 1% was considered CCyR so congratulations (and that the margin of error is 5%)! Are you going to Rochester? They are conservative but I've had way fewer BMBs at Mayo then many of the folks on here talk about.

I guess I don't see the need to rush right into a dosage increase, one result does not indicate a trend. Good luck!

Pat

[NotJack?]

Hey Josh,

I go to Mayo/Roch also.  Mayo has become pretty conservative in its approach in the last 20 years.  They generally do the best proven therapy until a better one is proven better elsewhere.  Then they incorporate that therapy into their protocol.  My general onc is more reactive, Mayo is more careful.  I benefit from both outlooks.  My general onc wanted to start altering my meds when my numbers were questionable, Mayo took a calmer approach, advocating to monitor closely, and lets see where this goes approach.  It sounds like you are doing well, and in good hands.  Jack