Does anyone else have the der(9) deletion?

[Guest guest]

Hello All!

I haven't posted in awhile...been busy trying to prepare for BMT and looking

into options.

When I first posted here I was told by my Drs. here in Canada that I was in

blast crisis...I have recently come to find out more about my situation when I

went to the Karmanos Clinic in Michigan for a bmt consult...

It seems I was not in blast crisis as told by the Drs. here - my blasts were 14%

at diagnosis - so I was in accelerated phase - the reason they have been

treating me so aggressively is because I have a deletion on the 9 chromosome

which they feel statistically can make my CML more aggressive...

They are still pushing for BMT and I am waiting to see if the Government will

give approval for me to have the bmt in Michigan (I am from Canada)- in the

meantime I am looking for anyone else who might have been recently diagnosed

with this deletion and how they are being treated...

I have recently been switched to Sprycel which I can honestly say is the " drug

from hell " for me...weeks of nausea and diarrhea, edema and generally not

feeling good...the local Dr. told me I have to grin and bear it as this is her

drug of choice...I was switched because my log reduction fell from 3.39 in April

to 2.89 in June - not a really big slip but she had been looking for a reason to

switch me and this was her chance..I'd much prefer to have stayed on the 800 mg

of Gleevec because I had no side-effects with that other than hair loss.

I would really love to hear from anyone who has this deletion...I have met a

couple of people who had the deletion and went to transplant - just wondering if

there is anyone out there with the deletion who was not pushed to transplant?

Cheryl