MDS starting Inqovi

Pretty sure levaquin froze my shoulder. So painful. It's known for joint pain +

@255 yes, I took Inqouvi after 16 mos of Revlamid which was not working anymore. I also took Levofloxacin for a while without side effects. Since you have high risk MDS and you are not getting any younger, I am surprised your Dr has not already put you on the transplant path? How long did your Hem/Onc give you before AML sets in?

@janetlen

Good question. When I broached the timeline, they said that my results indicate a 25% chance that the MDS will progress to AML, and that if I do nothing I'm looking at a 14 +/- month survivability. . . they also indicated that before a transplant can be done, the blood values need to improve and at that time do another bone marrow biopsy (after 2 rounds of therapy) to see if the blast percentage has improved to below the 10% threshold, I'm currently at 12%. I'm scheduled to meet with the transplant specialist soon to determine if I'm a candidate. Since I'm new to this, and as you are probably aware, the information and proceedures are a little overwhelming at first, and right now I'm doing my best to understand the implications and too mentally and physically prepare for the changes. I believe in listening to what one's body tells it what works and what doesn't.
Thanks
As for the Levofloxacin, it's considered a "black box" drug, and that is somewhat concerning.

@255 I hadn't heard the term "black box" drug before and will look into it. I had a transplant after being told MDS had progressed and survivability was decreased to around 17 mos. My blasts never increased, but I picked up another 5 mutations in addition to the two I started off with. Yes, all the information can be overwhelming. MDS can be deceiving. People think you look just fine. Low WBC and platelets had little affect on how I felt. It was the low RBC and Hemoglobin that affected me most. I had to get WBC and platelets up before the transplant. The hemoglobin was kept closer to normal with Revlimid the Inqouvi. Praying you are a candidate for a BMT.

I was given the opportunity for a BMT when I was diagnosed with AML at the age of 74 in 2024. I elected not to go that route. With Ventclextca and Dacogen I went into remission. Continued less intensive treatments (read less frequent and shorter duration) because my numbers seldom if ever get into the normal range. Especially true of my neutrophils. The BMB in Dec showed the mutation SF3B1 which is MDS. I went from AML (84% blasts at diagnosis) to MDS. Just the reverse. My Hem/Onc thinks that is why my numbers see-saw. In June of this year I started INQOVI. So far Just 1 pill for 2 nights in June. Drove my neutrophils down so low I had to go back on Leviquin for 7 days. I get weekly blood draws and will see my Stanford Hem/Onc on Wednesday when I will get my quarterly MRD blood draw. The last 3 MRD’s have not found my FLT3 or NPM1 AML mutations. I am in deep remission and have a GREAT quality of life. Working 6 days a week at 2 very different part-time jobs. I give thanks every morning and night for this life I am living. My AML team, research and Spirit are the reason.
I wish all who are traveling this road have a team like mine who understood when I turned down the BMT that road was not for me. I wanted a quality of life that the BMT at that time did not offer! Paryers for all who are on this journey. There is hope and I am an example for sure. 78 and thriving!

Excellent, and thank you for the positive energies, and for sharing your personal experience.
The more information one has the better armed (so too speak) when battling the MDS foe.