Cedazuridine / decitabine User Reviews & Ratings

• Sue...
• Taken for 2 to 5 years
• September 17, 2024

Cedazuridine / decitabine for Myelodysplastic Syndrome "After reading the very negative review, I thought I should tell of my more positive experience. I started taking INQOVI two years ago when I had a 5Q deletion with my MDS. Previous to that, I was taking support for the pancytopenia resulting from MDS. The first chemo drug I tried was Revlimid. It stopped working after six months. A short time later, I was prescribed INQOVI. Other than some fatigue and 'Chemo Brain Fog,' I have had no side effects. It took a while, but my RBC, WBC, platelets, and neutrophils eventually started to reach a low normal, with my hemoglobin reaching a whopping 12.4! I describe my cancer as a rollercoaster, and I am just hanging on for the ride. My numbers rise and dip, but in the last year or more, I have not needed any blood transfusions: whole, RBC, or platelets. My hope is that I can stay on this for the rest of my life; my concern is that it might stop working for me. I am in my late 70s and want to live a lot longer. So far, so good! Thank you, INQOVI!"

• Ser...
• Taken for 1 to 6 months
• January 21, 2023

Cedazuridine / decitabine for Myelodysplastic Syndrome "This drug was so bad that I would rate it as life-threatening. I was taking 1 tablet daily over 5 consecutive days a month. When I was on the fourth month, the first tablet of the week, I immediately experienced my legs and arms being cooked from the inside out. They looked like I had been in a fire. I immediately stopped taking it, and over the next few days, I had lost my desire to eat and drink. I became very weak, and after 4 days, I had to go to the hospital emergency room, where they started treatment with fluids, steroids, antibiotics, blood, and platelet transfusions. My kidneys and liver had shut down also. After a few days, all the skin over my entire body was peeling or flaking off. My fingernails and toenails came off, and my feet started to bleed. After a while, it started to destroy my teeth also."

• Ano...
• Taken for 1 to 6 months
• May 22, 2025

For Myelodysplastic Syndrome "Just started my fifth round on Inqovi. The first round put me in the hospital for four days because my WBC got too low, and I got a high fever. Since then, I get a Neulasta shot after I finish the five doses. The only side effects I have are fatigue and brain fog. I don’t have much of an appetite either. Most days I feel pretty good. Blood counts are still very low, but we did see some improvements after the 4th round. No hair loss, nausea, diarrhea, or rash. I would recommend this drug. Hopefully, I can stay on this drug for many years."

• Lin...
• Taken for less than 1 month
• December 16, 2020

For Myelodysplastic Syndrome "I started on this drug, 35 mg for five days. Those days went fine, felt okay, but 8 or so days later, my platelets went to 13, my white blood cells went to 226, my red blood cells to 7.6. I had to have 2 units of blood, one unit of platelets, and so far several injections of Zarxio for my white blood cells. One in 10 get this response, and I got it. The doctor has taken me off the drug as I am too sensitive. Extremely bad mouth sores, so far my white blood cells have gone to 0, red blood cells at 7.2, platelets have gone up. This is my journey. I am very sick. Really understand and investigate this drug before you take it."