CCL - Debilitating exhaustion

[PAgrandmom]

I was diagnosed with Non Hodgkin Lymphoma in April 2016. I have been taking Inbruvica for the past 3 years which has been successful. Today I find it hard most days to get out of bed. I am exhausted all of the time. I have been on a downward spiral for several months. Dr has me off of the drug for now to see if I feel any better. One thing that I am hoping to do is connect with some sort of counselor. I strongly feel that if I had a advocate that would check on me now and then it would help me feel a bit more positive. Be well everyone and have some thing good to eat.

[LuzyCLL]

I worked with a cancer specialist psychologist at the Seattle Cancer Care Alliance, he taught me invaluable ways to CHANGE MY THOUGHTS, it really works. Do look for a therapist, it can really help.

[PAgrandmom in reply to LuzyCLL]

Signed up with a talk therapist. My family and friends are not interested in my day by day struggle with fatigue. I am also hoping to get a Pa medical card to get something to help with the fatigue and pain. Thank you.

[AnneHill in reply to PAgrandmom]

I have been taking Ibrutinib for 3 years as well. I have the same fatigue. I am sure its worse than I had before.We are going to the coast for a few days and I am starting to sort out a few things to pack. I hardly do anything and I am exhausted. I am taking 280mg now and the pain is a bit less.

I wish I knew if stopping the Ibrutinib would improve my quality of life but then a different drug may cause more problems.

I hope you get help, Anne uk

[PAgrandmom in reply to AnneHill]

I have been off of Ibrutnib at times for surgeries - it is a blood thinner. I am off of it right now and there is no change in my fatigue - NONE. My dose is 420 mg. I cut the tabs in half for 2 months and that made no change either. I am fairly convinced that the doctors do not really know how the drug will affect various people. I see 5 year studies but nothing longer. I am about to the 5 year mark. I am seriously looking into some sort of medical marijuana that I can take on a day that I want to go out. I don't have pain, just awful fatigue... I a YouTube video today where they took a table and cut it in 4 pieces that could be taken through the day - that seems like a good thing. The medical card is about $100 a year and the mj can be $70-80. Who know... I pray that something will turn up so that I can feel less exhausted. BE WELL TODAY.

[AnneHill in reply to PAgrandmom]

I wondered if Ibrutinib kills off things we need as well as those we dont. I dont know anything about cbd oil or steroids but I need something for sure. The usa have states where cannabis is legal but not the uk. Just going away in this country is an effort. I keep telling myself that I dont need a lot at home so why do I need loads to go away. Then I see how much I take for granted. How could I travel light?

Maybe I can ask my doctor for some amazing drug. Things are only a big deal because just sorting a few things is so hard. When I stopped the drug for 2 weeks I thought the joint pain was improved but it came back with a vengance when I began it again.

Its settled but my right wrist is swollen and painful this morning. I need to make an effort this morning but its hard.

I will try to stop moaning but I think its depressing knowing we are stuck with this.

Take care, Anne uk

[PAgrandmom in reply to AnneHill]

Ibrutnib changes the DNA to reproduce healthy cells. Yes/no? Does it change other things that we might need? $64,000 question. Fatigue is a byproduct of CLL. It is up to us to research and find every thing that we can about what we should be eating, sleep, exercise, etc. I pigged out on 3 pancakes dripping with syrup and butter the other day and my eyes were crossed for hours - too many carbs at one time. But they sure tasted good in my mouth - but I paid a price for my treat.

Ibrutnib has done well for me for 3+ years. I went off of it for 6 weeks to see if my energy came back and it did not. Something else is going on. Blessings.

[1susiE]

same for my husband with acalabrutinib

[PAgrandmom in reply to 1susiE]

My heart is out to your husband. I wake up with a list of things that I want to do and after a shower and breakfast I am exhausted. Seems like I am always tired. I have signed up with a talk therapist through Independence ($0 co-pay) and I am hoping to get a Pa medical card. Best wishes to your husband and his wonderful caretaker.

[PAgrandmom]

AH, yes the exhaustion is getting worse after almost 4 years on Imbruvica. The Imbruvica has worked well but ------ Today if I go out one day I am off my feet the next day. I have signed up for a talk therapist through Independence to keep some of my stuff off my family and friends. 66% of people worldwide die with a chronic disease. The sad thing is to see my life frittering away and I could be doing so many wonderful things. Some days I feel sad when I realize that I have woken up - again. Everything is drudge; a shower, a load of wash, a sink full of dishes, yard work, etc. I have had a busy full like to now be straddled with this mess. Doesn't matter the few $ coming to me from the RoundUp settlement. What can I do no with a new car and a tank of gas??? Be well, eat something good, I get tired of my own cooking.

On a funny note - I was only married once, we divorced, he married again and the 2nd wife passed away 2 years ago - and now he is again spending time with me.... It is good for my libido at 81 to have some male attention.

[AnneHill in reply to PAgrandmom]

I wish I had a libido, haha.