Does Anybody Have Experience With Inqovi?
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.
I do
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?
Tom, what kind of treatment are you getting now?
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.
I Am Newly Diagnosed With MDS Del(-5q). I Am Looking For Information About Other Peoples Experiences.
Are There Others Out There With CMML Who Are In Trials Using Medications Or Are Receiving Any Oral Medications Prescribed By Their Doctors?
What Is The Latest Study On How To Treat CMML? Especially For Older Male Patients That Are 75 Plus