fatigue

[DogmomLM]

hi friends. I am doing well and into week 7 of the O plus V treatment. I have never felt fatigue like this before. I am a very active person and this has really stopped me in my tracks. Have you had the same? Does it ease? Thank you.

[PennyLane2024]

I am in week 28 of V+O. I finished O two months ago. First, you have to accept the fact that your body is going through a lot right now. Two types of powerful medicines and the anxiety associated with being in treatment. I certainly felt less fatigued after I finished O. No more infusion appointments and one less powerful drug. I have found that the best way to address my fatigue is to take actions that reduce my anxiety. Healthy diet. 8 hours of sleep. Zoloft. One to two walks/bike rides/swims a day. My wife constantly tells me “Be kind to yourself. You are going through a lot.”

[SofiaDeo]

PennyLane2024 is spot on! Some of us have very few side effects, some of us have "more" as we go through treatment. Hopefully your fatigue will ease in time, especially as the emotionality of "I am undergoing cancer treatment" eases up.

[Poodle2]

Agree with PennyLane, the fatigue got better as I went through the treatment and definitely much better once the O infusions were over. If you are tired - rest, sleep, take it easy. Your body is going through a lot. It should get better with time. Focus on the outcome 🙏🏻❤️🙏🏻all the best to you. The first two months were the worst for me.

[Salad55]

I am 2 years out of O and V and have been in remission ever since. I agree with everyone. The fatigue does hit you, but exercise and a good diet does help. Definitely, be kind to yourself. If you can try and push yourself to even go for a walk, I found that it helped with the fatigue. I liked to spin and do exercise classes. Sometimes I would start a class and have to stop. Sometimes I would do the whole class. I listened to my body. Now, after all of the treatments, I still get fatigue now and then, but this is typical of CLL. I a

[Mahler5]

What is O and V and why is this type of treatment given please?

[Skyshark in reply to Mahler5]

More commonly V+O, Venetoclax and Obinutuzumab. Obinutuzumab is a fully humanised monoclonal CD20 antibody, it attaches to the CD20 protein on B-cells surface. The antibody tags the cell to be destroyed. Venetoclax is a BCL-2 drug that attaches to BCL-2 on the CLL cells mitochondria, this prevents the mitochondria "powering" the cell and causes the cell's death.

It was approved for first line treatment of CLL by UK NHS in December 2020.

It is a short duration treatment, given for 12x 4 week cycles. Then the patient returns to watch and wait (or active monitoring), with hopefully a long time until next treatment is required.

Other treatments are covalent BTKi (cBTKi), Ibrutinib, Acalabrutinib and most recent Zanubrutinib. These block the BTK signalling path and cause CLL cell death. They are taken continuously until intolerance or mutations that cause resistance are selected, resulting in refractory relapse. There is strong evidence that the next treatment after stopping for intolerance is more effective than after refractory relapse.

Venetoclax and Ibrutinib is also available (in Europe and UK NHS). This is an alternative short duration treatment 15x 4 week cycles, that combines Venetoclax with a cBTKi drug. It is comparable to V+O in effectiveness but has 3 extra cycles of the BTKi drug at the start instead of the 9 days of intravenous anti CD20 monoclonal antibodies. As it's short there isn't any evidence of developing resistance mutations.

There is no right or wrong choice. Genetic markers, heart, liver and kidney condition may preclude the doctor from offering some of them.

[Mahler5 in reply to Skyshark]

Thank you Skyshark - so helpful as Zanubrutanib was mentioned for my next treatment

[Dutchie-1963]

Absolute agree with the previous post. Im on cycle 5. Energy is way better then when i started with Obinutuzumab & Venetoclax. But still approx 60-70% of my "normal" life before CLL.Hold on, the results are great!

I definitely need tot avoid stress and get a good sleep.

[prbs2707]

Hi, You have had some very good replies here already and I can only agree. I finished 12 months of O&V in March 2022 and am now 2.5 years into a good remission so there is much to look forward to with these wonder drugs. I too felt terrible fatigue during teatment but, as Pennylane has said, it did get a bit better after the O infusions were done with. Its a strange fatigue isnt it? Not like a tiredness that you feel after an exhausting day when its rather nice to collapse and wake feeling refreshed. I found that I did collapse into sleep but woke to find I was still knackered! However much sleep you have you still feel exhausted.

I had three simple methods to get through it all. (1) eat a very good diet. In fact I decided to give up meat all together and followed the simple mediterranean diet. I do eat lots of seafood but try and avoid any processed foods. I still dont eat meat and dont think I will again and I feel better for it. (2) when I felt tired and exhausted I pushed back against it by forcing myself to take exercise. I would take the dog for a walk or get on my bike and make myself go for a ride. It sounds counter intuitive but it really helped me. And (3) have an afternoon nap. Dont overdo it, around 30 mins max worked for me.

Those three things helped me greatly. As others have said (and as my consultant told me at the start) your body is being hammered. Not only is your system working hard to try and counteract the effects of CLL but it is also effectively being poisoned by very powerful drugs. So not suprising that something has to give, in this case energy levels and exhaustion.

So be kind to yourself, hang in there and try these tips. I think everyone on this forum has experienced extreme tiredness, its not pleasant but it will get better especially at the end of treatment. And dont forget its a lot better than the alternative when, years ago there were none of these amazing treatments available! Good luck with it all and especially with the rest of your treatment, I think you must be nearly over the worst by now. Veery best wishes, Patrick

[dvd1955]

I finished V+0 treatment just over 3 years ago. I don't have any tips for what you are going through during treatment, but wanted to give you some encouraging words about post treatment energy. My energy level has been so much better than it was for several years before V+O. Pre diagnosis, my wife and I wondered why I was always tired. Then was told I had CLL. Was fatigued throughout the entire process, W&W and during treatment. Now I'm back to my former self playing tennis and pickleball 3 to 5 times a week and walking the dog twice a day and still have energy left over.

So hang in there. It will get better!

Dave

[skipro]

Awe I can relate and empathize with that fatigue on V + O. It's such a challenge and my heart goes out to you.

I found that getting out doors in nature for a walk, or to ski or snowshoe even if it's only for 15-30 minutes helps and over time my endurance gradually improved on treatment.

I also gave myself permission to lay down for 30-60 minutes a day and even if I couldn't sleep, it helped a lot.

Finding ways to help others took my mind off it.

I admit that in the earlier phases there were days I could barely get up and function.

Hang in there, there are better days ahead.

Here's a pic I got on skis even though I could only participate for about an hour as opposed to all day.

Good luck and God bless

Skipro

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[Deilginis]

sometimes there can be a physical cause. My ferritin level dropped 10 pts in the month pre- treatment and carried on down to 12 when they checked again at end of treatment. I described crushing fatigue to my doc but had the impression from doc so does everyone else. Might be worth checking ferritin level (NOT same as haemoglobin).

[Exerciselover]

Hello, I am in week 9 or 10 of the O +V treatment. I have never had an issue with low iron or anemia. I was active and worked out in the gym 5 days per week before treatment. My platelets were low before treatment and have dropped to 60s or 70s. I was fatigued when treatment began, and angry and depressed about it. I made myself go back to a few gym classes per week about a month in, and I think it helped with fatigue. Now I am getting used to 400 mg of V. I am walking 1.5 miles before gym classes 3 times a week and active with chores at home. Fatigue is lifted somewhat, but I have stamina issues. It was very difficult to accept the Fatigue but your body is doing a lot of work fighting cancer!!

[DogmomLM in reply to Exerciselover]

Thank you! I have a similar schedule.,exercise class plus walking. And being mad at fatigue! I am an artist and by early afternoon, I’m out of ideas and energy. I am also in week 8 of O and V. Thinking things will improve! All the best to you.

[Exerciselover in reply to DogmomLM]

My oncology team says energy improves a lot after infusions are over and we are just on V. So I am trying to enjoy the holidays, get my Dec infusion and that is all I am looking at right now. Then I'll have a new challenge in Jan to finish my O infusions for a few months. If I break it into pieces I can handle it.

[OutontheEbike]

Hi, I'm at week 7 of V+O and I'm also finding the fatigue hard and I'm only on 100mg of V. Do you find it harder when it ramps up? As for those of you who exercise how hard do you exercise. If on the day you feel like you can push yourself, should you or should you hold back as not to deplete your reserves. If anyone has any advice or a link to something that would be much appreciated. Sorry for jumping on your post DogmomLM, Hope you're feeling better soon and it is nice knowing I'm not alone on this journey

[Exerciselover in reply to OutontheEbike]

Hello OutontheEbike,I'm over the ramp-up, and heading into cycle 4 of obin. I have been on 400 mg of ven for 30 days. I am not nearly as tired now as during the first few months. My stamina is still not what is was. But I'm back to walking 2 miles on an indoor track and taking an hour exercise class at our senior ctr 3 times per week. 7000 steps per day. Hoping to keep increasing that. Now in class I push myself until my heart rate is fairly high and I HAVE to take a break. Then I regain my breath and go again. A month ago I was more gentle with myself. I've decided I am not going to hurt myself!!! I do know more of my limits in terms of not scheduling events all day long, as I used to. For instance, on Thanksgiving, I cooked in the morning, because I knew I could sit down and rest in the afternoon, followed by a long walk. So I do pace my activities.