October 25, 2022 at 10:17 am #58774
I have been taking INQOVI (decitabine & cedazuridine) since February of 2022. My most pressing issue has been with a low platelet count. After my first month, my platelets doubled (from 38k to 79k). In subsequent months they were lower but still above 50K. Now in October I just had a reading of 81K and hoping this becomes my norm. I’ve had no side effects from taking the drug. I’m classified as Low Risk and have been followed since 2013 but until I started with INQOVI my platelets were on a steady decline. Has anyone else had experiences with this drug – either positive or negative?October 25, 2022 at 12:53 pm #58776Kate CaballeroParticipant
I was diagnosed with MDS in April 2022. Blasts >10%. Inqovi is the first treatment recommended and I just completed my 4th cycle of 6. Platelet levels have wandered between 90K to 231K, with the last result at 146K. I’d been as low as 60K. Hemoglobin has consistently been rising, from 11.7 to 13.1. I have had minimal side effects, with a teeny bit of nausea at the end of one cycle. In addition, my doctor has moved my Inqovi cycle out to 5-week intervals (up from 4-weeks). And moved blood draws from weekly to every-other week, which I believe to be a positive sign. My general health seems to be good, other than weakness and low stamina, which I understand, is part of the deal with MDS. We are planning a BMB after the 6th round is complete.
However, my stem cell transplant has been delayed because I have no 10/10 match – worldwide! That just blows my little mind! How common is it that? They’re now looking for a 9/10 or 8/10 match. But that’s another discussion topic.
I have, so far, had a positive experience with Inqovi. If one must fight this disease, I believe Inqovi is currently the best way. So much better than IV chemo! But each person has a different story, it seems. For me, Inqovi seems to be doing its intended job.
All the very best to ya’ll for comfort, peace and remission!
October 27, 2022 at 12:40 pm #58779
- This reply was modified 1 month, 2 weeks ago by Kate Caballero. Reason: Additional info
Thanks for the reply. It sounds like the drug is working for you as it is for me. I’m hoping to get my platelets above 100. Moving from 4 to 5 weeks was something I hadn’t heard of. Perhaps when my platelets get higher I might discuss this with my doctor. Like you, my motivation to take INQOVI was to avoid the IV chemo which would have significantly change my lifestyle. I wish you all the best in your journey. MarcNovember 13, 2022 at 2:40 pm #58804mk thompsonParticipant
New doctor going to start this drug whenever the special pharmacy sends to
Me. Am scared of side effects since the Aransep caused me to have a stroke. Previous doc didn’t pay attention to my family medical history of strokes. Now I have another issue to be worrying about.November 13, 2022 at 3:00 pm #58805
Of course everyone is different but I have had no side effects at all and the drug has been working for me. Good luck with your treatment!November 26, 2022 at 12:58 pm #58855cerbysamParticipant
I may have to go on INQOVI some day. From what I have searched it is over $7,000 per treatment. Will your part D drug coverage pay for this? I am selecting an insurer soon and want to make sure I am covered if it is ever needed. Thanks for all of you help.November 26, 2022 at 1:35 pm #58856
Closer to 9K a month. My part D with WellCare covers all but $10,000 per year. There are a number of orgs that make grants to assist with the copay. My specialty pharmacy helped me with this. Most offer such a service
November 26, 2022 at 2:22 pm #58859cerbysamParticipant
- This reply was modified 1 week, 5 days ago by Marc Slovak.
Thank you Marc. Very helpful.
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