CLL is no longer dormant

[Mamouchi]

I live in Hamilton and being followed by a Hematologist at Mc Master. I have had my condition for 8 years and have never had a risk assessment. I had another blood test done and I am seeing my specialist Tuesday. This last year has not been so good . Should I request a Fish test, CT scan etc or what’s?

[Newdawn Administrator]

Hi Mamouchi,

I’m not aware of what testing is available where you are but Chris may know. It would help if you locked your post to the community.

Your long W&W should constitute an ongoing ‘risk assessment’ process because that’s the reason for it. To monitor progress, changes and look for deterioration in the condition that may warrant treatment. Has your haematologist indicated a need to consider treatment or further tests?

I see from your previous post that you have had an ultrasound and have enlarged para-aortic nodes. On the basis of the information you’ve given, it would be hard to know what stage you’re at but I think the discussion has to take place with your haematologist when you see him on Tuesday.

If you are concerned about possible internal enlarged nodes or any other issues, talk to him about them and ask how your blood results are looking.

Best wishes,

Newdawn

[lankisterguy Volunteer]

Hi Mamouchi,

I agree with NewDawn, I doubt that any testing like FISH etc. will add useful information, until you need treatment. After 8 years of watch & wait your doctors certainly have enough data to know how rapidly your CLL is progressing just from blood tests and physical exams. Most CLL experts don't use CT Scans except to diagnose specific problems or symptoms.

-

Watch & Wait (Worry) is difficult, but I suggest you clearly describe to your doctor, any symptoms related to your "This last year has not been so good" and help the doctors figure out if there is a possible cause, separate from your CLL.

-

Len