Goodmorning everyone

[Eirinik]

my mother was diagnosed with cll in 2017 and was on watch and wait till march 2022 when she did colonoscopy and the stomach one (don’t know what it’s called ) here white blood cells were sky high and they found she had malt lymphoma B cell and gastric so it was decided to start infusion with Gazyva

And then start venetoclax , she had an allergic reaction to Gazyva so it was decided to just do the venetoclax ibrutanib. She has been ok but the last month she feels extremely tired I can hardly recognize her she can’t eat well for the past 6 months , are doctor says patience we’re doing blood work on Monday and some stool tests to see what’s happening.

She took some Xanax to help her cope but I think that made her worse

[neurodervish]

Hello Eirinik, Welcome to this group. I am so sorry to hear your mother is suffering and send best wishes for a fast recovery.

I had not heard of MALT lymphoma before, but looked it up: "MALT lymphoma (also called MALToma) is a form of lymphoma involving the mucosa-associated lymphoid tissue (MALT), frequently of the stomach, but virtually any mucosal site can be affected. It is a cancer originating from B cells in the marginal zone of the MALT, and is also called extranodal marginal zone B cell lymphoma"

The drugs your mother has received are well-tested and have a good success rate for CLL. Fatigue can be a common side effect, also the appetite can be affected. But I do not know anything about MALT lymphoma research, and it sounds like the gastric issues are complicating everything.

I wish I could tell you something reassuring, but I do not know enough. Please know that my thoughts are with you and your mother.

Can you help us understand your specific question? For instance, is your most important concern about your mother's fatigue, or stress level, or that she cannot eat well? It would also help to know her age, to give us a sense of her health.

[Eirinik in reply to neurodervish]

Thank you so much for your response !!!

It’s been hard and today we had her stool tested for blood cause of the iron she takes we couldn’t tell and that came out positive for blood

But her iron levels are good so that’s weird wondering if it’s from the medication or something more serious

Thank you again to good to have everyone here to talk ❤️

[Ptown]

Eirinik, it appears your mom is dealing with a lot right now, as are you and your whole family. It is scary when we see a parent struggle with their health.

Please know you are most welcome anytime to have your questions answered to the best of our ability and your concerns addressed. Meanwhile, think of our online community as emotional flying buttresses for you and your mom. Carolyn

[Eirinik in reply to Ptown]

Thank you so much ❤️

[Gisygirl]

I had a bad reaction with the Gazyva ( zapped nearly all my white cells- good and bad) and so have been on Venclexta only since 2021. It took months for my body to adjust to all this. I had no appetite and lost 30 lbs. and was so very tired, no energy. Doing much better now which is what I wish for your mother.

[Eirinik in reply to Gisygirl]

Wishing you the best and thank you for the support sending u and your family lots of prayers from Greece

[Pearlpink]

my experience with Gazyva was great. They watch you like a hawk! Within 2 weeks my spleen had shrunk massively. I had a bit of reaction at beginning, but most people do. It’s incredible how quickly my white cells went back to normal. I met some wonderful nurses, who know exactly what to do if you have any side effects. I’m on venetoclax now. Xx

[neurodervish in reply to Pearlpink]

I had a similar experience with Gazyva. They gave me the first tiny dose (1/10th the normal dose amount) over 11 hours. It took a week for my body to accept the drug. But after that I had no problems.