Anyone take Inqovi (decitabine and cedazuridine) for AML?

I will start INQUOVI on 6/23 and update here what I experience (or don’t). My Onc/Hem has me going back to weekly blood draws for this first round. He feels it may address my SF3B1 mutation found in my Dec BMB and that mutation my be responsible for my numbers struggling to get in the normal range even tho my MRD blood test no longer shows the FLT3 or NPMI mutations key for AML!

Hi,
I am a 81 year old who has have been in treatment for AML for about 4 1/2 years at Mayo Jacksonville. I have been in full remission for several years now. Over those years, I have been in treatment with Venetoclax combined with some dosage of Dacogen. I have gone from 5 fusions of Dacogen monthly, then down to 3 infusions monthly, then a swtich to an INQUOVI pill weekly about 8 months ago. The INQUOVI pill contains 60 mcgs of Dacogen which I took myself. My weekly blood work showed that my recovery was not as complete as before and left me with stretches of low neutrophils (my weak spot). Since the INQUOVI pill only comes in one dosage and can't be split, my team recommended trying weekly injections of Dacogen in my abdomen instead. The dosage could be now be based on my BMI and took me down to about 1/3 of the INQUOVI dose. I have now been on that routine for 4 months and my blood numbers, including my neutrophils, are very good. I am delighted and hope to stay on this routine. Luckily I live near Mayo so going in for weekly treatment is not a problem. I feel fine, some fatigue but no more than I had on the previous routines.
Over these past years, I have learned how much new research is helping to refine AML treatment options. I also know that I will need to keep taking some amount of cancer-fighting drugs as long as I want to avoid reoccurence. A small price to pay for my otherwise near-normal life!

@sonieaml, how is treatment going so far?

@colleenyoung Thanks for asking…
I didn’t notice any side effect's from the 2 nights I took INQOVI. However nights 3 and 4 (no INQOVI doses) were restless due to overall body aches. The nightly aches lessened as the days progressed! Joint aches are not new to me but the overall body pain was not expected. The manufacturer includes a kit with the initial prescription that has a journal. I have made a note and will discuss with my HEM/Onc during our video call next week.

@sonieaml thanks for updating information and symptoms. I start inqovi on 7/8 and always seek to understand if its the chemotherapy causing symptoms or food related, and what are those symptoms versus side-effects. Only 4-weeks into treatment, apparently can't eat melons anymore for now (watermelon, cantalope,etc) severe diarrhea.Always have back pain, just deal with it. Have a picc line, save me some inconveniences.
Thank-you!
Dave

@rrtdave
Dave thanks for sharing too. I will hope that your side effects lessen or resolve completely once you transition to INQOVI. Keep us posted please.