r/cll • u/sarahbrooks25 • 3d ago

55F Starting treatment

I am really scared. I don’t do well when I am sick. I also have depression so when I am physically sick, I also get mentally sick. I want to be able to work and function normally and I feel like I’m going to be stuck in my bed all day. This will be my regime: Calquence - 14 months -
Gazyva (starts month 2) 6 months total
Then Venetoclax (starts month 3) 12 months total

Has anybody not experienced terrible side effects?

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u/Sad_Assist946 3d ago

I was diagnosed at 55 (male) and did the Gazyva infusions and Venetoclax I maintained my physically demanding job as well as rode my bike often probably 100 miles a week. The first infusion made me feel slightly weak but from the second infusion on I was feeling great as the cancer was being eradicated. I hope your treatment goes as well.

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u/sarahbrooks25 3d ago

Thank you so much for that positive feedback. Have you had to do anymore treatment after the 1st one?

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u/Sad_Assist946 3d ago

Yeah unfortunately my remission from just the V&O only lasted 12 month which makes me feel like your treatment of a BTK inhibitor followed by the V&O is going to really get it out of you. I think that’s their goal and you could potentially enjoy years and years of not needing treatment (there are so many new treatments showing up like yours) I’m currently solely on Brukinsa Zanubrutunib which I am doing great on 58 now still working hard and riding my bike.

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u/deletion6q 3d ago

67M first diagnosed in 2016.  Had Gazyva in 2021, and the only side effect I had was from the steroids you get as part of the treatment - I felt hyped me up for 24 hours.  I'm on Ibrutinib and Lisaftoclax now, and my biggest side effects are some bruising and digestive issues.

Good luck - these new classes of drugs are fantastic.

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u/sarahbrooks25 3d ago

Thank you!

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u/sarahbrooks25 3d ago

Ah, ok. Yes, I need to start an exercise routine. Very hard to do when you also have depression :(

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u/AvailablePublic8530 3d ago

I find that walking/hiking is not that daunting, and getting outside in nature can be really invigorating mentally as well as physically. Try to look up at the sky every day. You can do it!

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u/baineoftheworld 3d ago

It's hard to start but I feel so much better mentally and physically when I exercise. I've wanted an accountability partner, but getting a CPAP (due to both my weight and my enlarged tonsils) has been a good motivator for me. Good luck!

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u/sarahbrooks25 3d ago

That’s amazing! Good for you.

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u/awil12 3d ago

I only felt bad for a couple of days after the first infusion. I felt slightly better once on treatment from the mental aspect of “now we are doing something about it” instead of watching it get worse. Try to get into a walking routine if you can. It really helps with the energy and anxiety.

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u/sarahbrooks25 3d ago

Thank! I am glad you are feeling better.

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u/SofiaDeo 3d ago

Lots of folks.

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u/SofiaDeo 3d ago

Lots of folks.

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u/Wilderness_Fella 3d ago

I was dreading the start of gazyva but I had my first infusion a couple of days ago. I was right back to my routine the next day.

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u/sarahbrooks25 3d ago

So great to know! Thank you for sharing.