Proctitis and Venetoclax

[Lady_Lymington]

I have been on Venetoclax since September 2020. In late November developed symptoms of Tenesmus. In February my GP referred me for investigations. Sigmoidoscopy and biopsies all clear, but MRI of rectum showed widespread thickening of rectum. Have not been given any explanation to the cause and am in constant discomfort. Am wondering if anyone else has experienced this while taking Venetoclax or Ibrutinib?

[AussieNeil Partner Administrator]

Hi Bartley,

The only other mention of proctitis in this community was a year ago here:

healthunlocked.com/cllsuppo....

I hope you'll soon feel better,

Neil

[Lady_Lymington in reply to AussieNeil]

Thanks for that.

[MystyUK]

Hi, your post has been of interest to me. I was on acalabrutinib and venetoclax. For a few months I have been suffering from what I thought was piles, but reading your post makes me wonder if the discomfort I feel maybe due to something else. Have you been told if there is anything that can be done to ease the discomfort?

[Lady_Lymington in reply to MystyUK]

Hi. Have tried regular Paracetamol which helps a bit. However the pain has stopped me doing my daily 8 mile power walk for a few weeks now. I spoke to GP on Thursday, who prescribed low dose Amitriptyline every evening....the only effect so far has been a very good night sedation! I have no history of bowel problems pre treatment for CLL. I had to stop Ibrutinib in Feb 2021 due to adverse effects and remain on 400mgs of Venetoclax. The main problem is the continuing sensation of something stuck in my rectum/anus. I have emailed my trial team but have heard nothing as yet.

[MystyUK]

Oh dear, hope you feel better soon. Same as you, I was fine pre medication!

[waer88]

I'm scheduled to begin using both meds in clinical trial this month. I will send your comments to my doctor for reaction.