Bloodwork keeps trending down

[Floridagirl49]

Bloodwork keeps trending down.. lymph abs dropped by significantly since diagnosis. Several large lymph nodes have gone away completely. Is this a sign of regression? Also does anyone in Tampa have a doctor they recommend? I need a doctor that can handle me .. lol that doesn’t get upset when I question them or don’t totally agree .

[GMa27]

Did you try Moffitt Cancer Center? Dr. Pinilla is very caring. You don't always get to see him every visit but works closely with his staff/team.

[Floridagirl49 in reply to GMa27]

I have talked to moffitt.. but have not made an appointment yet.

[Floridagirl49 in reply to GMa27]

I will ask for him possibly.

[Jm954 Administrator]

Hi Floridagirl49,

I may have missed it but did your husband get a definite diagnosis of CLL? CLL can regress and stabilise for many years.

Jackie

[Floridagirl49 in reply to Jm954]

Yes he has a definite diagnosis. The numbers look like regression.

[cllady01 Former Volunteer]

I have to 2nd Jm954 question, because in reading your initial post you state, "He had a blood smear that indicated CLL" And then suggested you were awaiting further testing. Has he had a FISH test that gave more definitive information about chromosome deletions?

As to your question re: hemotology/oncologist in Florida, the following site has a list of Drs. recommended by CLL patients —some are listed in Florida.

[Floridagirl49 in reply to cllady01]

He did have the FISH test.. she said the test indicates the CLL with a better prognosis.

[cllady01 Former Volunteer in reply to Floridagirl49]

Good to know of the better prognosis.

You might want to ask for a copy of all the blood work including the FISH and any other tests so you can keep a record of levels and know the profile of his CLL.

Keeping your own record helps at time you feel the need to call the Dr. or to ask questions here. You can know the latest and it helps you to begin to learn some of the terms used regularly.

It appears I did not include the link to the helpful list of Drs. (there are several listed for Florida). Sorry. Hope you find one near you or at least not too far away. HERE is the link:

cllsociety.org › Toolbox

[Floridagirl49 in reply to cllady01]

Thank you soooo much! Yes I have copies of all bloodwork and tests. I also did my own blood test through an online lab and it was trending downward.

[Floridagirl49]

Yes he has a definite CLL diagnosis now.