Sleep disorder and CLL

[Porter01]

Wondering if untreated sleep apnea is causing equal parts of fatigue with CLL. On Ibrutinib and had awful chest pain last night along with mouth sores and muscle bone pain and also bleeding gums. I was on 420 mg for 11 days then taken off ( my white count and platelets were already going in the right direction) 2 weeks later started 140 mg and lymph nodes began to swell so was put on 280 on my second month white count is lower than it was in 1992 and platelets went from 100 to 133. Amazing! Only I’m feeling as sick as before with more fatigue. My Dr wants me to see heart Dr for irregular heart rate and I’m considering heading into sleep Dr too. Couldn’t use c pap but had sinus and deviated septum surgery. Sleep disorder was improved after that but feel it needs more. Hope to hear Ibrutinib improves energy and quality of life when blood counts continue their path to normalcy!

I was on w&w from 1992 to Nov 2018 when I was told my CLL had become active. I was told during my IVIG treatment. It was the same feeling I had when I was diagnosed. Although I wondered every time I felt worse than usual that it was time. I as all with this “good cancer” hope to feel better. Wish all of you the best!

And if you read this and have been on treatment with ibrutinib and your results. Only fellow CLL understand

Thank you and this site for having someone that understands. Best to you all...from Seattle

[Panz]

My goodness once you started treatment you really had some issues develop....sure hope you are able to get things to settle out....you are having far too much fun!!!

This is a great community and you will have a lot of support here. Good luck!

God Bless you!!! ☘️🙏😍💕

[Porter01 in reply to Panz]

Thank you Panz. I don’t usually have pity parties...let the fun begin🤗❣️

[Panz]

Hey, there is nothing wrong with a pity party...it is perfectly normal to have them from time to time...we all do and itis a good release. Now you just shake it off and get on with your business at hand! Have a lovely weekend! ☘️🙏😍💕

[Porter01 in reply to Panz]

Thank you...you have a lovely weekend too

So thankful I found this site I didn’t know it existed..actually found it while googling info on Ibrutinib and the med starting with V. Ha. We all have a common bond Thank you again ❣️🤝💝👍🏼💃🏻🎸

[LynnB1947]

The only sleep disorder I've had has been insomnia. I found by moving time of taking ibrutinib from the evening to the morning, I sleep much better. I began ibrutinib in April 2014 for SLL. It has been a good drug for me.

My lymph nodes shrunk significantly within the first 3 months. My blood counts are in normal ranges. Since my diagnosis is SLL, I did not have high WBC counts like CLL patients.

Wish you the best .... LynnB

[ornstin]

It's possible the sleep disorder is contributing but you have a lot of other things on your plate which must be affecting you severely. One thing that strikes me is what you say re the Ibrutinib. I thought this was a long-term medication not to be taken on an on-off basis. However please don't rely on me but discuss with your specialist or seek a second opinion!

PS I suspect I have sleep apnea too but it has not been diagnosed. Snore a lot and sometimes feel very groggy/dizzy in the mornings. Best regards Antony