MDS is a bone marrow failure disorder
MDS is a blood cancer
Learn More >

Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

APR246 trial

Home forums Patient Message Board APR246 trial

This topic contains 3 replies, has 3 voices, and was last updated by  Amy C 2 months ago.

Viewing 4 posts - 1 through 4 (of 4 total)
  • Author
    Posts
  • #44615

    Paul Dyer
    Participant

    I am a 50 year old man, diagnosed in mid July with high risk poor outcome multiple mutated genes. Further cytogenetic study showed P53 mutation.
    Luckily I went to Dana Farber, and enrolled in a new clinical trial with a drug called APR246 & azacitidine. After 2 rounds blasts were less than 1% (down from 9%). I was immediately scheduled for an allo transplant which occurred on Nov 3, after another trial of venetoclax pre transplant. Now at day +30 and improving daily.
    Is there anyone else here in the APR246 trial? Results?

    #46362

    chicaloca9999
    Participant

    My dad was just diagnosed with MDS. Not sure of all the details at this point. I just know he has a tp53 mutation and a partial exon 9 duplication not sure if all other results have come back yet or if he has more issues like that. Not sure risk level yet. 1% blasts we have been told but that did not come from his main hematologist. We have not been able to see her yet due to him being inpatient.He is 70. Anyone else have this mutation or duplication? Not even sure what to expect. He is currently in hospital due to infection to which they cannot figure out what bacteria, fungus, or virus is causing it. He almost did not make it. He is better now lab wise but now is having issues with confusion and lethargy. They stopped voriconazole due to possibility of that med causing the mental status changes but day 4 out, he is still not any better in that area. On cefepime now along with many other meds such as vancomycin. Not really sure what is causing the mental status changes and lethargy that seem pretty severe. Any advice or info would be greatly appreciated. I saw you also had tp53 so I thought maybe you would have knowledge.

    #46366

    Paul Dyer
    Participant

    Unfortunately, I don’t have much insight for you. My diagnosis/treatment/transplant happened so quickly. I was in very good shape when diagnosed. I had no problems with the clinical trial/treatment. The drug APR-246 (Prima-1) is now in its phase 3 trial. I was involved in the 1b/2 phase. It is showing great promise to a mutation (TP53) that has had poor success to date. The trial is only happening at a few “centers of excellence” such as MD Anderson, Moffitt Center, Dana Farber? I hope this info was of help, and wish your Dad the best.

    #46775

    Amy C
    Participant

    Paul- how is everything going now? I explored this trial for my Dad with a Dr. at the Moffitt center.
    He has MDS Tp 53 as well. Thanks and good luck

Viewing 4 posts - 1 through 4 (of 4 total)

Register for an account, or login to post to our message boards. Click here.

You must be logged in to reply to this topic.


Login

Login

Search Forums

Review answers to commonly asked questions or get answers to your questions from an MDS expert