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Michele Polland
ParticipantI also have high risk MDS. It took 6 months for me.
ParticipantPaul, I’ve been taking Inqovi for the last 6 months. Prior to that I received infusions of first Vidaza and then Dacogen for two years. I have an unusual allergy to all of these medications that causes intense itching. I now take Prednisone on the days I received infusions and now Inqovi to deal with the itching.
The Inqovi has been wonderful. The pills are sent to my home by the CVS Speciality Pharmacy. No need to go to an infusion center. My bloodwork is looking good (for me). Wish my hematologist offered this option in the beginning of my MDS journey in February 2020. Doctors in cancer infusion centers don’t make money off the pills I guess that’s why it’s not offered.
Good luck! Hope it works for you.
Participant62 rounds, wow!
Just preparing for my 8th round of Dacogen (started off with Vidaza). Almost from the beginning I’ve had a serious, debilitating problem with itching (no rash just itching that makes my body feel on fire). Just wondering if any of you experienced such a reaction. My bloodwork is improving so I suppose it’s working. Benadryl and Pepcid did not help at all. Prednisone helped to some extent last month but I’m dreading my next round. Any suggestions? Thanks all!
ParticipantHi Lee, I was diagnosed in February 2021 with blasts at 6%. In April I had a heart procedure and my hematologist wanted to wait until after the procedure to begin Azacitidine (Vidaza). I began in June and have completed 3 rounds of 7 treatments out of each 28 days. Low platelets are my biggest issue but my hemoglobin and red blood cells are also low. I haven’t experienced any major side effects. One minor effect is itching on occasion. Fortunately, a nurse at the cancer center convinced my doctor to administer the Vidaza via infusion versus a shot in my stomach. I recently had a port implanted to receive the infusion. I believe this is a much better approach. I start round 4 on Tuesday. So far my numbers are dropping which is typical with Vidaza until round 6, 7, or 8, as I understand it. I’m 70 and retired so I receive my infusions in the mornings. I feel fine the rest of the day.
I’m not a candidate for a transplant so I’m hopeful this treatment works for me. MDS is a scary disease.
I wish you good luck!ParticipantI have the 5q Deletion (also MDS with excess blasts-1). My platelets stayed in the 70 range for several years and has now dropped to the 35-45 range. Yes, MDS causes tiredness.
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