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Real members of MyLeukemiaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Does Anybody Have Experience With Inqovi?

A MyLeukemiaTeam Member asked a question 💭
June 11, 2024
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A MyLeukemiaTeam Member

Tom, I have AML but also have experienced the symptoms you list with the exception of balance issues. With leukemia, we are more susceptible to infections and chemo brings WBC counts down, which makes us susceptible too. It is an ongoing issue, unfortunately.
Early in treatment, I had quite a bit of weight loss and was advised to drink Ensure, a supplement, which I did. My appetite and weight are back to normal at this point.
Night sweats were another issue and that is no longer happening for me.
Mouth sores were still another misery. I found rinsing with salt water helped. I was also prescribed a rinse called Magic Mouthwash, which I put on the sores with a Qtip, to avoid numbing my whole mouth. They have not been a problem for a long time now. Thank goodness.
Fatigue is an ongoing issue for me.

June 14, 2024
A MyLeukemiaTeam Member

I do

June 14, 2024
A MyLeukemiaTeam Member

Nothing for leukemia at this time. Just monitoring it. I take an ultomiris infusion every 8 weeks for PNH side effects. I wonder if fatigue, balance, loss of appetite and weight loss, night sweats, infections and mouth sores are on-going effects of leukemia, and if they are episodic (occasional). Maybe everyone with CLL has these to some degree?

June 13, 2024
A MyLeukemiaTeam Member

Tom, what kind of treatment are you getting now?

June 13, 2024
A MyLeukemiaTeam Member

Thanks for your response - it is helpful. I had 3 Inqovi treatments but had to stop due to the side effects. I had quite a few blood infusions and platelets. My platelets were in the 2-9 range, WBC 0.2, 0 neutrophils, HMG in the 4-8 range. I think the reaction was so severe because I'm comorbid; I have PNH. My BMB went from 11 blasts to 1, which was good. But now I'm having some of the same side effects I had a year ago. I think I am in relapse. This is new to me.

June 12, 2024

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