Still no results

Well we are still waiting on our CT results...

[AussieNeil Partner Administrator]

Sorry to hear you are still facing what can be the hardest part of living with CLL - the waiting. (Most of us are on watch and wait, or as many of us term it worry and wait, so we know how you and your husband feel.)

If it is any consolation, CLL being a chronic illness, we do generally have plenty of time to make adjustments to our changed circumstances, so it is unlikely your husband will be rushed into treatment. In fact, if he only has neutropenia to deal with, he could be waiting many years before treatment as has been my experience. Neutropenia can be temporarily addressed by injections of a bone marrow (G-CSF) stimulating drug such as neupogen, but I have been living with neutropenia for nearly 9 years and the two specialists I have seen both recommended against these injections into the skin over the stomach, because the effect of long term use is not known. Speaking of second opinions, have you made any progress arranging one for your husband?

I take it your husband is keeping infection free on his somewhat reduced diet?

Hoping to hear some good news soon,

Neil

[Hidden in reply to AussieNeil]

Yes we have read up on neutrapenia and made changes. So far good. He has a bit of sinus stuffiness but no fever. 🤒

His worst is the tiredness and nausea.

Thanks Neil , this community is amazing.