I have CLL. I be am 4 months into a 1 year targeted immunotherapy plan. I receive a monthly infusion of Obitinubinazab and 300mg venclexta daily.
I am very tired everyday. Went from 400mg to 300mg to try and help. Still exhausted. Anyone have similar experience ?
how old are you? When were you diagnosed with CLL? How many treatments did you have before? Anns
Hi Ann. I am 56 years old. I was diagnosed when I was about 52- 53 years old. my white blood cell count was climbing during my annual physicals about 10 years ago. At some point, my primary care physician sent me to oncologist/hematologist. He diagnosed me with CLL and put me in a watch and wait program.
last fall my blood cell count doubled at some point from around 25 to 50K. My doctor told me in December we would reevaluate in March but most likely I could start treatment at that point. So I did to start a 1 year targeted immunotherapy. He said I could continue to watch and wait. He said I could start taking a pill that I would take every day for the rest of my life. I chose targeted immunotherapy.
I ramped up on the Obinituzinab getting sick only on the very first Infusion. After 21 days or something, I started on the venclexta. I of course, ramped up on that also. Up to 400 mg. After about six weeks or two months, I was so exhausted. My doctor said to cut back to 300 mg after taking a three day break.
I received no treatment at all prior to this treatment that I started in April of this year.
I’ve been reading some other folks testimonies. I have not had severe diarrhea, but I have had severe exhaustion.. I am tired all the time. I will clarify that I am very tired in the morning. I cannot wake up. Some point around 10 to noon I do wake up and I am up Wideawake until maybe eight to 11.
some nights I do suffer insomnia. I have ambient for that. I take so much medication. I am scared to take it. I don’t want it to put me to sleep forever. Even when I’m awake I’m tired and I exhaust very easy from most tasks.
What's your haemoglobin been doing prior to and during treatment? How fatigued were you prior to starting treatment?
You are now going through the most intense part of your year of treatment. You've recently ramped up to near maximum venetoclax and are having obinutuzumab infusions every 4 weeks. The treatment is shrinking your nodes and spleen and your lymphocyte count should be around normal by now. Your body is going through a lot, processing all the dying CLL cells and remodelling all 600 or so nodes, your spleen and your bone marrow back to normal, plus/your liver and kidneys are dealing with both obinutuzumab and venetoclax and you are probably dealing with some treatment side effects. Your bone marrow is working harder to make blood cells right now and your immune system is probably struggling to keep infections at bay. That can be very, very tiring.
I went through the same treatment plus acalabrutinib 5 years ago. It does get better, but be aware that it can take a few months after finishing treatment, before your body adjusts to being off treatment. It won't be long and you'll have finished obinutuzumab. A year from now you'll be CLL and CLL treatment drug free!
Neil
Thank you so much ! Very informative. I’d have to check those numbers. Right now all my blood numbers are in target range.
I have been tired for the last 2-3 years.
IhaveCLL1 that's it ☝🏻what Neal has just said! A great motivational speech. Keep going! It's not easy but it'll be worth it! Sleep if you need to, take your time. You will get through it. It will be nothing but a memory next year at this time. All the best.
Awe I empathize with your struggle and send prayers and best wishes.
I am 16 months into the same program for relapse and as hard as it is to accept, fatigue is part of the experience. Mine got better with time and has brought a few silver linings
1 I have adopted much better sleep habits
2 I strive to stay active albeit not to the same intensity as before. But I get outdoors to hike, ski or snowshoe regularly in the beautiful mountain forest. There is something about nature that revives me. The beautiful pine trees, amazing sunsets, the wildlife the wildflowers and all things. This has really literally save me mentally physically and emotionally.
some days I'm literally crawling back to the car because of exhaustion but even if I get out there and do a little bit of some thing that helps a lot.
3. Adopted hope you're eating habits.
and I have to say that it does get better with time
God bless you and all the best to you on this journey
Ski pro
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