No more prednisone.😕

[janjuergen1]

My husband has been on watch and wait for the past three years. This year things changed after he’d been down with a cold flu in February.

Two weeks ago we saw the oncologist and she put him on a two week period of prednisone, as he was so tired., as well as Calquence. In those two weeks he regained so much energy and it was wonderful to have him doing life again without having to nap 3 or 4 times a day. Alas, when the two weeks were finished of the prednisone they wouldn’t refill his prescription and now his tiredness has returned. Has anyone else experienced this? I know that one of the drawbacks of Calquence is tiredness so I wonder if it’s just the drug affecting him now?

[JigFettler Volunteer]

Hmmm...

Does your husband have sleep apnoea?

I had sleep apnoea before treatment. I had a thick neck with lymphnodes. Treatment melted them all away. My wife told me my sleep apnoea promptly resolved. So did my tiredness.

I've since wondered how much sleep apnoea affects us with CLL. I can't recall sleep apnoea mentioned that much wrt the fatigue of CLL... I guess it's not an indication for treatment. But fatigue is such a big issue for us all,

127 posts when searching for "sleep apnoea" in the Forum posts...

Jig

[Stewie_1968 in reply to JigFettler]

Hi janjuergen1 ,I hope your husband will feel like his normal self soon .

They don't like keeping people on Prednisone ( steroids) longer than they have to , they really do give you a up lift in many ways including appetite increase etc

There are lots of reasons your husband may be tired and it can take alot of time to recover if it was the flu which also went onto his chest , being stressed can cause tiredness etc

As your husband had a recent blood test Hb etc , just to check ?

I'm afraid I've not had any experience with Calquence to comment on this

Best wishes

Stewie

[Newdawn Administrator in reply to Stewie_1968]

Stewie, you’ve replied to the wrong person. Not to worry, the poster janjuergen1 will automatically receive a copy of your reply.

Newdawn

[Stewie_1968 in reply to Newdawn]

Hi thanks Newdawn 👍, wouldn't have picked up on that Stewie

[janjuergen1 in reply to Stewie_1968]

Thanks for your reply Stewie. Yes he’s recently had bloodwork and his WBC has skyrocketed from even last month, thus the Calquence introduction. It was nice to see him “up and at ‘em” for the two weeks on prednisone. It allowed for his spleen to shrink down which gave him the chance to eat again, and good to see him not so tired. But, as I’m learning, this is all a part of our journey now, and we’ll need to adjust our walk as necessary.

[LeoPa in reply to janjuergen1]

How are his RBC and hemoglobin levels?

[janjuergen1 in reply to LeoPa]

His HGB is 85 which is down from last month when it was 96. And his RBC is 3.23 from 3.26 last month.

[LeoPa in reply to janjuergen1]

Therein lies the reason of his fatigue, most probably. Those numbers are quite low.

[Islandvibes in reply to JigFettler]

I have severe apnea and have used CPAP for years. I have continued fatigue

[CoachVera55]

I started with Zanubrutinib but did do 10.5 weeks on Acalabrutinib. And absolutely that sucker made me feel like I was walking in cement but with Hydration & fighting to move, it decreased some. Yes definitely an adjustment but its an amazing drug. Please keep us posted. #GODSPEED🙏🏾

[janjuergen1 in reply to CoachVera55]

Thank you for letting me know how it affected you. It is reassuring hat this is the norm.