Rituximab and Venentoclax treatment reaction

[Mick491]

Hi All

it's been a while since I've posted here.just for background I had FCR in 2010, ibrutinib 2015 until 2018 had to stop with stomach bleed and swelling.then just over year ago I went on the Rituximab (IV)for six months and oral Venentoclax varying dosages 200 to 400 mgs. I managed for 10 months but began being sick all the time,swollen stomach and bad constipation due to the antisickness pills. I Ihave also lost a stone sand half in that time. I .spoke my consultant and request to stop treatment as life was unbearable. I have been off chemotherapy now for about 3 months. Unfortunately the only benefit is I have stopped feeling/being sick. My stomach is still swollen and it feels like something is stuck all the while. This not a moan or complaint as I am very pleased with the team looking after me, but I just wondered if anyone else on this treatment has been unlucky with side effects and had to stop treatment. Above all be well,thanks, Mick

[CycleWonder]

I am sorry to hear about your digestive system troubles but please don’t hesitate to reach out to us on this forum. That is why we are here - not only to learn but to connect with others.

Have you thought of seeing a gastroenterologist? It seems like it might not hurt to see if a colonoscopy and/or endoscopy might be helpful.

I was struck by your comment that “something is stuck”.

Please keep us posted on how you are doing.

Patti

[Mick491 in reply to CycleWonder]

Hi, have had both endoscopy and colonoscopy this year just found some bleeding and ulceration. Waiting on CT scan results. Thanks for the kind reply, Mick

[roszika]

I an inclined to agree with Cycle Wonder. Have you had any tests like a gastroscopy and/or colonoscopy to rule out any other underlying problems. Also you were on Ibrutinib for 3 years and that could have contributed to whatever is happening now. Perhaps you also need an abdominal scan. I was on Veneteclax 400mg for 2 years (2019 to 2021) and had 6 monthly infusions of rituxa at one stage and I was very lucky- very few side effects although for the 2 years on V every single day 3-4 hours after taking the Veneteclax I suffered nausea for a few hours then it would pass. I must say that even now I still sometimes have abdominal pains but neither a gastroscopy or colonoscopy have shown anything dramatic though I do suffer from helicobactor pylori resistance . 3 times I have had the triple medications to eradicate it but to no avail. Have you been tested for helicopacter pylori bacteria that live in the stomach ?. Anyway have some investigations as it would be a shame if you cannot persist with Veneteclax as it brilliantly puts one in remission theoretically for 5 years so my Professor tells me

[Mick491 in reply to roszika]

Hi, many thanks for your input. I have had this year endoscopy and colonoscopy which show some ulceration of the bowl. I am waiting on CT scan results but as I have not already heard I'm presuming there is nothing drastic. I'm not going to go back on Venentoclax as life was unbearable. Other treatments have been mentioned but I'm not keen presently. However my spleen was enlarged prior to treatment and I will have to see where I'm at. Thanks Mick.

[terryI_uk]

Hi Mick, I had to stop ibrutinib because of oesophagitis gastritis and several bleeding duodenal ulcers. I had been taking it between 2015 and 2018 as well. I have been in remission since and had no further treatment. My next haematologist appointment is scheduled for late September so I'll keep my fingers crossed nothing's changed. I suffer quite badly with fatigue and have had usual tests at GP recommended at last haematologist meeting all of which came back ok, God bless, Terry

[Mick491 in reply to terryI_uk]

Hi Terry

Thanks for the reply. I know how feel with fatigue. I'm sontired all the while. I sleep in the day every day and usually in bed by 8. I feel so dragged down. My next appointment is mid September, if I called my nurse specialist I think she would get me in sooner, but while I can manage I want to carry on. God bless you too, Mick