Tests

[Kiwidi]

Finally in a land( Aotearoa NZ) where referral for such tests are as rare as hen’s teeth I have had the chance to get what is maybe the full ‘Monty’ After 5 years on W&W and lots of pressure on here and finally from a retired haematologist I met on a CLL Advocacy page I made an appointment with a haematologist who then ordered these tests to be done. The tests won’t cost me ( I did check before I went) but the appointment will! Hopefully I will learn all I need to know about my specific form of this damned disease from these tests.

[Kiwidi]

I need to make the most of this visit so be good to have an idea of what questions I should ask. Any suggestions?

[Ptown]

Hello friend, It is a good to hear you will be going to see the specialist. They will be able to discuss the specifics about what mutations you have and give you a solid overview of what changes have occurred during the years since you were first diagnosed.

Another positive aspect of your consult is beginning a relationship with this doctor so that if, or when you might need treatment, you are in the system and have started to build rapport.

Your world wide community here stands at the ready to help you sort the results out and generally lend you support. Let us know how your appointment goes.

Carolyn

[Kiwidi in reply to Ptown]

Saw specialist couple of days ago. She is lovely! Very lucky to get pretty good result. No IVgH test ( lab technician didn’t submit sample in correct tube) so still don’t know if mutated or unmutated but specialist thought with these FISH test results probably the former. Hopefully won’t need treatment for a very long time and by the time I do I will have access to funded drugs🤞

Text

[Ptown]

As my mom always said, “knowledge is power!” Now you have baseline information. This is the foundation for noticing changes, making comparisons and treatment decisions as warranted.

I just passed the 9 year anniversary of my diagnosis with CLL and and still on watch and wait or “Keep tabs and March on!”.

Wishing you well🤓 ! Carolyn