Re: visit with oncologist / hematologist

March 16, 2011

,

I am Watch and Wait, almost 2 years past original CLL

diagnosis. My case is followed by a very nice but busy

hematologist in Mississauga. At my request, he recently

agreed to give me a FISH test (I do not have the results

yet). He was reluctant originally, as he said knowing my

chromosome status would not affect my treatment plan when

the time comes, which will be FCR. I then mentioned that FCR

doesn't work well for a 17 deletion. He said if I was 17

deleted, I would be progressing faster (I have been Rai

Stage 1 since diagnosis). I would really like to know my

IgVH mutational status, which is not commonly tested in

Ontario either, but I'll approach that with my hematologist

at a later date:)

CT scans of the abdomen are not commonly done in early stage

CLL. I was given an abdominal ultrasound, which is the

standard practice most CLL experts are comfortable with.

Good luck! I hope this CLL journey is a slow one for you.

Kay

March 17, 2011

Hi

I, too, was diagnosed at St Catharines GH, in Sept 2008, with SLL, apparently

now the same as CLL. The Hematologist recommended going straight to treatment

due to rapidly falling hemoglobin. No FISH, or Zap70, etc, although I had a

bone marrow biopsy. It must be something Canada doesn't do.

I did, however, go for a second opinion (Roswell Park Cancer Center, Buffalo)

who put me on a less toxic chemo regimen. I do recommend a second opinion,

although in your case there seems to be no hurry.

I did have greater than normal bruising before diagnosis, although treatment was

imminent. I had FR at Roswell and have had a good two year remission since,

although with much fatigue.

I'd be happy to email or talk off list if you want.

Sheelagh

Recommended Posts