Lukiemia and High white blood count

[ConcernedSpouse2012]

Extremely fatigued, tired and sleeping all the time. Weak and hard to walk without loosing breath. Loss of appetite. And eating very little. White blood count really high but abs neutripils are very low. Red blood a bit low. He has 40 Percent blast and they have been treating him. So far he's not showing a strong positive result. He's already had chemo, radiation and bone marrow transplant before. He went in remission and it came back twice. Now I'm concerned of course. Do you think he still has a chance of remission. That the combination chemos they are trying now might work. Does this sound like a normal circumstances or that of something going terribly wrong where he is right now In all this?

[cajunjeff]

Sorry to read your husband is doing poorly. I am not aware of any Cll doctors regularly posting here so most of the feedback you will get is from others with Cll.

It’s not clear all what treatments your husband has had or what he is having now, so your questions are hard to answer. That said, I think there is always hope with Cll that some therapy might work where others have failed.

In general nowadays people who have failed chemo or transplant might be getting venetoclax, ibrutinib or Gazyva. There are many clinical trials combining these drugs as well. Cll is a heterogenous disease such that what doesn’t work for some may work great for others.

If he has tried these drugs without success there are clinical trials showing very encouraging results with carT and car/nk treatments.

So without knowing more, I think there is hope for remission. You are doing the right thing posting on here. If you give some more information about his past and current treatments, some of the more knowledgeable posters on here might can give you some better feedback about possible options. There sure are a lot of stories on here of folks that were mighty bad off with their Cll and rallied.

[AussieNeil Administrator]

I appreciate that this is a very worrying time for you and your husband, but without more information, it's hard to give you both meaningful, relevant support. For starters, it sounds to me that your husband has a myeloid leukaemia not a lymphoid one. This community supports those with Chronic Lymphocytic Leukaemia/Small Lymphocytic Lymphoma (CLL/SLL).

If you can share more about your husband's condition and treatment, then perhaps we can help more. Fatigue can be due to the condition and/or treatment. Some may be explained by his anaemia. Do you know how low his haemoglobin is? Neutropenia can be managed by G-CSF injections, but if it is lower than 1.0, he should also be very careful what he eats. Treatments can cause neutropenia and anaemia, but the degree varies with the treatment and patient. You can search for the treatment combination to see the experiences others have shared on those drugs.

Hope this helps,

Neil