65 replies to this topic

[Sunshine48]

So had an appointment at uofm with specialist today... I was pronounced with "untreatable CML". I didn't even think that existed, but he did another fish test to ensure I didn't have cml and something else well I don't and I've gone through gleevec, tasigna and now sprycel... He said transplant is a need and I guess already emailed my transplant doctor... He said he thought that one. Of the three matches they said where a match soooo I'm hoping fingers crossed I should know Monday if so.. Then... Well I don't know from there where it goes lol like I know I get my date and do some more tests about it. So I'm back on hydrea to lower my platletts and the sprycel to hopefully keep me from going higher in numbers. Just my latest update, fingers crossed for a donor!

[Sunshine48]

So had an appointment at uofm with specialist today... I was pronounced with "untreatable CML". I didn't even think that existed, but he did another fish test to ensure I didn't have cml and something else well I don't and I've gone through gleevec, tasigna and now sprycel... He said transplant is a need and I guess already emailed my transplant doctor... He said he thought that one. Of the three matches they said where a match soooo I'm hoping fingers crossed I should know Monday if so.. Then... Well I don't know from there where it goes lol like I know I get my date and do some more tests about it. So I'm back on hydrea to lower my platletts and the sprycel to hopefully keep me from going higher in numbers. Just my latest update, fingers crossed for a donor!

[pamsouth]

Sunshine, Help me understand what is going on; You do not have CML, and you have been on Gleevec, Tasigna and Sprycel and are now having a transplant.

My question is if you do not have CML what do you have and why do  you need a transplant?

Pam South

Sunshine48 wrote:
So had an appointment at uofm with specialist today... I was pronounced with "untreatable CML". I didn't even think that existed, but he did another fish test to ensure I didn't have cml and something else well I don't and I've gone through gleevec, tasigna and now sprycel... He said transplant is a need and I guess already emailed my transplant doctor... He said he thought that one. Of the three matches they said where a match soooo I'm hoping fingers crossed I should know Monday if so.. Then... Well I don't know from there where it goes lol like I know I get my date and do some more tests about it. So I'm back on hydrea to lower my platletts and the sprycel to hopefully keep me from going higher in numbers. Just my latest update, fingers crossed for a donor! 

[Sunshine48]

I'm sorry if my posting was confusing... I have a Cml that is non responsive to treatment "untreatable CML".  He did the fish test to ensure there wasn't another issue happening on top of my CML that would make me not respond to any of the meds. I did not mean it as I don't have CML I wish I didn't lol... It was just a confirmation by my specialist that yes I am getting the transplant because the tki's are not working for me. My platletts keep rising and WBC.   Does that explain better? Lol I stink at explaining the stuff they tell me lol why I always bring my daddy with me lol.

[pamsouth]

Hi Sunshine, Actually you did say untreatable CML.  I guess I wasn't paying attention, and had never heard of untreatable CML.  Well that i a bummer.  I am sorry that you have to go thru all of this. 

Yea I know about high platelets.  Before Diagnoses I went for a check up and had a CBC and the doctor called saying the lab didn't know how to read my platelet count, they thought it was 10,000 so she had her husband who was the pathologist look at it and it was a million.   Two weeks later I went for a BMB and they did another CBC and the platelets were 2 million.  So I was on the hydrea for awhile, I think I took abut 3 times the normal dose.  I remember going to the ER because I felt like i had an Elephant on my chest, rapid pulse.  As my platelet counts dropped I started decreaseing my hydrea don't think the doctor was happy but I just couldn't take that heavy feeling on my chest, I thought for sure I would have a heart attach.

Wishing you all the best on the donor and BMT, You will be one of the lucky ones and have a cure!

PamSouth

[Sunshine48]

To be honest I had never heard of it either. Dr erba said that when someone goes through gleevec and then not responds to both the second generation drugs that's what they consider them.. Again I dunno I had never heard of it before either he said every case he's ever felt with has responded to one of the second generation TKI meds. Guess Im special in all the ways I dont wanna be haha!!!