A few months after a bone marrow biopsy showed I was in remission, my Picc Line was removed because it had been in eight months and there was concern about infection. I was continued on IV Decitabine (and Venetoclax) but couldn’t stand the IV injections and, after a couple of cycles, was switched to Inqovi, an oral form of Decitabine.
My oncologist who made the switch specializes in blood cancers and works out of a center that does a lot of research and trials, by the way.
Since the switch, I had another bone marrow biopsy, which was also clear. I was due for a biopsy this month, by my oncologist said I didn’t need it, based on my blood work. I have blood work done every week.
The Inqovi was not without its issues. After the second round, my platelet count plummeted to 15 and I needed a platelet transfusion. But that was a one time thing. Other blood counts eg., WBC also have gone very low.
I was started on five days of Inqovi, then reduced to four days every six weeks. My Venetoclax has also been reduced. Both of my oncologists say I’m doing well at this point. (I keep expecting the other shoe to drop.)
I have been on Inqovi since last summer. For me, it’s much easier than the treatments with IV or shots.
I hope this helps, Christine, If you have any questions please let me know.
I hope you are well. Best wishes. 🌺

Ginny, did you have to have a bone marrow biopsy in order to switch medications from injections to tablet combination? I have had them twice now, also a platelets transfusion. Are you monitored by blood tests?

Hi Christine, I can relate to your difficulty tolerating azacitidine. I was on it when diagnosed with MDS and had bad skin reactions as well as intolerable itching. Plus the getting stuck seven times per four week cycle.
After progressing to AML, I was switched to IV Decitabine and the itching and other skin issues went away.
I am currently on Inqovi, an oral form of Decitabine and Venetoclax, a targeted medication every six weeks.
I too have been having more side effects recently. My oncologists say that is common after being in chemo so long (2 1/2 yrs) Last round, I needed more time to recover and my next round was postponed two weeks. Chemo is really hard on the body, as you know only too well.
Best wishes

I am starting my 2nd year of treatment now for AML, 7 consecutive days (not weekends) of subcutaneous injections in my stomach of Azacitidine, plus two tablets of Tibsovo daily at home. My first 6 rounds were 7/28 days cycle; since then 7 days, but 6 weeks instead of 4 to allow more recovery time between. Tibsovo is for my damaged IDH1 gene mutation which is killing my immature blood cells in the bone marrow, caused by radiation therapy (2x) for two previous breast cancers. I tolerate the Tibsovo well, but the stomach injections are getting harder for me to do, psychologically as well as physically. I hope you are doing well and wish you the best.

I was diagnosed 14 months ago at age 85 after 35 years of blood cancers. I had Azacitidine mono therapy for first 2 months. A year ago switched to Azacitidine and Venetoclax oral tablets. Have been stable so far. Only issue is platelets languishing at 20k, despite taking Eltrombopag tablets and Romiplostim injections fortnightly. Need occasional packed cell transfusions but frequent platelet transfusions.