Neglect on doctor’s part

[bal419]

My Dad was dx early 2019 with high-risk MDS. he is 73. Dx with TP53 mutation, among others. Original doctor seen in Maine just instantly put him on Vidaza, didn’t even think to send him to Boston to look into clinical trials or BMT first. Previously very healthy guy. Since dx, he has been seen at UPenn, Boston, a place in NJ and MUSC in Charleston, SC. The guy in Boston would have liked to put him in the APR-246 clinical trial, but because he had been put on the Vidaza already, he couldn’t offer it to him. The doctor in Maine was truly awful. She is a pretty new hematologist/oncologist and didn’t think things through AT ALL. It is so sad that the clinical trial could have really helped, and she took that opportunity away from him by not even discussing his case with colleagues. I just hope it gets FDA approved before we lose him.

[Amy Clark]

Hi Bal419,
It sounds like you are frustrated and angry about the care your dad received. His situation is very hard and many of us can understand your frustration. I know it comes from a place of concern and your dad is lucky to have you by his side. It is terrible to think that something could have been done for someone you love when it wasn’t. But before you go too far down that road, it might be helpful to remember a couple of things so that you can stop mentally beating the doctor up now or yourself up later.

1. That particular clinical trial is a randomized 1:1 to the control arm of Vidaza or the experimental arm of APR-246 + Vidaza. He would of had a 50/50 chance of either arm, not a guarantee of the new med. Clinical trials can be tricky like that. Often time patients think that they will get something new and better in a clinical trial. Sometimes that is true, sometimes that is not. See NCT03745716.

2. You can still go to a CoE (Center of Excellence) for other clinical trials or to investigate a BMT/SCT.

3. Doctors only know what they know. HMAs (Vidaza and Dacogen) are considered standards of care for most types of MDS. If a doctor isn’t affiliated with a research hospital or clinic, they very often don’t know what is offered there. Our first hematologist was very highly regarded in her field, but did not know ANYTHING about the clinical trials next door nor did she even mention them. Clinical trials are not for everyone and most doctors don’t assume people want them. And children and spouses of the patient only know what they know.

4. This disease has a lot of uncertainty around it. Things that look promising early on, sometimes don’t bear that out when the dust has settled and large studies or real life patients have been watched.

I will pray for your father and you. Hang in there, my friend.

[mdsfound]

Thank you for your post with information regarding your father’s health. I know this is a difficult situation for you and I would recommend that you take him to one of our Centers of Excellence in MDS for a second opinion if you have not done so already. It is not unheard of for some patients to get even third and fourth opinions from our designated Centers of Excellence. He should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment.

Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. I hope this information helps.

[Author]

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