The fixer of everything.
Her name was Voncille but we knew her as Peppe, to the extent we knew her at all.
For years Peppe would pop up on Facebook pages or MPN email lists.
She would smile, volunteer help, offer advice, complain, dig in and fight for something she believed in, open her heart and always burst on the scene with a big smile and high energy.
She was diagnosed with myelofibrosis in 2005. Two years later she was referred to MD Anderson for a stem cell transplant. She was approved by the transplant specialist but denied coverage by Medicare.
That was the start. She and her hematologist would struggle for nine years to find alternative therapies when few options existed. In October, 2016 Medicare finally approved a clinical trial that incorporated stem cell transplant.
In the summer of 2014, in her writing about the PRM 151 clinical trial, we all got to know Peppe a lot better. She was on the PRM-151 trial and had been on three others before that. She believed in the drug. It was helping her and she wrote a bit about it in the Forum.
Her narrative is a good place to start telling her story in her words.
He sent me to do all the testing and I got a diagnoses of MF. He watched my counts for 6 months and finally decided to send me to MDACC for a transplant.
I was seen by Dr. V for a diagnosis. After we sat down and spoke about options and what I was there for, Dr. V sent me to the Transplant Dept. to see Dr. Popat. At that time he was not able to answer my questions about transplants in MF patients because there was no data. This was breaking ground. So I wasn’t sure where I stood with my decision.
Here’s the wonderful part of this trip to Houston. I passed all the mandatory testing for a transplant, and was approved by Dr. Popat. Then when it came to insurance, I have Medicare and they will not pay for a transplant for MF. and still won’t till this day. I was devastated. I couldn’t talk . I had to walk away. It was out of my hands. I was always a fixer of everything in our family, but Mama was broken and there was nothing I could do about it. I got that part right away. So next day is another appointment with Dr. V and he gave me options and hope.
(In her article, she talks about her Revlimid trial with prednisone, 6 months, pomalidomide in 2009, BMS 911543…all terminated for adverse effects or lack of efficacy. She has become transfusion dependent. In October 2013 she and her doctor discuss the PRM-151 trial.)
I could see the excitement in his eyes, face and his actions. I said to myself, I’d hate myself if I don’t try this and it’s a success. So after our conversation I told him I was with him, lets do it.
PRM-151 is different than all the other drugs, in the fact that it’s not pills, but given through an IV or port, so you have to be at the clinic each month to receive the drug. You wait about 2 hours for a bed and it wears on you. The days are long, the time on the road driving is long, it’s all a huge pain in the butt, but knowing that I am finally having positive results after all these years is so exciting for me. I’m going to hang in there as long as I can.
I was on Jakafi with the PRM and asked to stop the Jakafi. I was getting blood transfusions every month. I didn’t feel well and I felt it was the Jakafi. So he said ok. That was 4/15/2014. While on Jakafi and PRM-151 I was receiving blood transfusions about every month. Once Jakafi was removed my blood counts slowly began coming up with no transfusions and I felt better.
About 6 weeks with no Jakafi hgb is now 10.5, usually it stayed in the 8’s and dropping. I think this is what helped my breathing to be honest.
It’s so easy to assume that the study drug is causing this or that. But with a great doctor in your corner to help you understand the ins and outs and one that genuinely cares about you makes you feel a little more in control and not falling apart because you don’t know what’s going on.
My thanks and gratitude to Dr. V, his team and to Promedior Company. I finally have hope!
(In the Summer of 2015, she is optimistic about PRM-151. Here she responds to a Comment on her article:)