Hard to fight even a small bug

[OaktownA]

hi, everyone,

my husband takes daily Acalabrutinib and receives monthly IVIG for CLL, and has been doing wonderfully, running several miles a day and in general great health. Last week, after two consecutive work trips, he spiked a fever. In the last 7 days, his fever (started at 100.7, as high as 101.2, now more like 99.5) has come and gone each day, accompanied by night sweats and total exhaustion. All tests came back negative, bloodwork shows all is normal (slightly elevated WBC). He was also negative for flu. Waiting for round two of blood tests to come in today. I do know that something else is going around, that has a lot of people unwell.

Besides 2 rounds with Covid, this is the first time he’s actually been sick since the CLL became active and he’s been on treatment. Is it possible that he’s just sicker than most people (and for longer) because his body has to work extra hard to fight whatever this bug is? He’s just been completely wiped out, sleeping most of the day and not able to eat much. He’d been having night sweats for some weeks before whatever this is arrived…

thanks, everyone!

[Panz]

I hope they have checked him for a urinary infection/kidney infection….those are the usual symptoms plus lower back discomfort. Just a thought!

Panz🙏😊🌞👍🍀

[OaktownA in reply to Panz]

Yes, his urine and kidney function was all normal. He has just one kidney, so we are always on alert for that!

[Classicaljazz]

Is he able to wear a mask when indoors with others, at work, etc. to avoid airborne transmitted infections and to employ good hand hygiene after touching public surfaces and before eating, rubbing eyes, etc.? While IVIG helps, IgG level is only one component of our complex immune system that may be lacking or dysfunctional in those with CLL regardless of if they have never had any CLL treatments, are on watch and wait, or currently undergoing treatment.

[OaktownA in reply to Classicaljazz]

does. He wears a mask whenever he has to travel and whenever he goes indoors to places like stores, and wash his hands frequently. I know with CLL he is a much more receptive host to whatever bugs might be flying around, so my question really was just if this extended fight and recovery is typical.

[Classicaljazz]

Does he get his IgG blood level checks just prior to his IVIG infusions? If the levels are too low he may need either more frequent infusions, larger doses for the monthly infusions, or just changing to weekly or every 2-week subcutaneous IgG home infusions to maintain more level blood levels. I think the IgG blood tests cost about $15 to $20 so a drop in the bucket compared to the IVIG therapy itself, so monitoring a blood sample at the infusion center just before the infusion is started is easy and makes sense.

Also, how are his absolute neutrophil counts (ANC)? Are they in the normal range of 1.8 - 7.9 K/uL (look in the WBC Differential lab results). If dangerously low, there are granulocyte colony-stimulating factor (G-CSF) subcutaneous injections his provider can prescribe that might help. Some providers may also prescribe low-dose continuous broad spectrum antibiotics/antivirals.

[genla]

My husband who also has CLL and is on Acala finds that while he may not get ill often, even minor colds last far longer than they did before the CLL became active. We actually are both just getting over a cold, took me ten days, he was three weeks, before he would have been less than a week. He also get the subQ IgG weekly, not sure if that makes a difference.