I've just recently worked my way up to Venetoc... - CLL Support

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I've just recently worked my way up to Venetoclax 400mg. I'm curious if anyone had similar side effects:

Nook120 profile image
8 Replies

I've just recently worked my way up to Venetoclax 400mg. I'm curious if anyone had similar side effects:

1. When I inhale, at times I will experience a shortness of breath (of sorts) it's hard to explain. When I exhale, often, I will cough.

2. 3 hours after an infusion of Obinutuzimab, I experienced severe chest and back pains.

I'd appreciate your feedback!

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Nook120
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8 Replies
lankisterguy profile image
lankisterguyVolunteer

Hi Nook120,-

We have had many recent discussions about lung issues, coughing and infections. See healthunlocked.com/cllsuppo...

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It many be more appropriate for you to look beyond Venetoclax as the cause of your breathing and pain issues. Both Venetoclax and Obinutuzumab can lower your Neutrophils and make you even more susceptible. to infections. You should check your recent blood tests and consult with your CLL expert to see if that has happened.

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CLL compromises our immune systems and makes us susceptible to bacterial, viral and fungal infections. These can be common pneumonias or rare fungal problems like pneumocystis. You should seek medical help to diagnose the root cause, likely a Pneumnologist that is experienced with immunocompromised patients like HIV AIDs, Multiple Myeloma, MDS, etc.

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Len

Nook120 profile image
Nook120 in reply to lankisterguy

Thank you Len for your advice. I will definitely look into it further.Stay well,

Nook

kathymac52 profile image
kathymac52

My husband has had the same treatment but not those symptoms. He has experienced stomach issues and neutropenia. Make sure your doctor knows about your symptoms.

Nook120 profile image
Nook120 in reply to kathymac52

HI Kathy,It seems like we all react somewhat differently to treatment ... It's a bit overwhelming.

Best wishes to your husband,

Nook

kathymac52 profile image
kathymac52 in reply to Nook120

Sending best wishes to you...and healing thoughts as well.

DD909 profile image
DD909

Hi Nook120, I’m on same and experiencing shortness of breath regularly then chest tightness 3-4 hours after after the Gazyva infusions. The oncologist asked me to see my pulmonologist so that she could prescribe meds for these side effects. Just had my second visit with her and she’s adjusting my breathing meds. Hope this helps. Good Luck!

Nook120 profile image
Nook120 in reply to DD909

Hi DD909I was taking venetoclax 400 in the morning. My hemotologist suggested that I take the venetoclax before bedtime and see if it alleviates my shortness of breath and cough during the day. And it did!

After this last OB infusion, I did not have any severe reaction.

Best wishes,

Nook

DD909 profile image
DD909 in reply to Nook120

Thank you - I’ll try that.

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