International MPN News, Science & Opinion

A fixer of everything

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A fixer of everything

Voncille at diagnosis

 

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.

It was when we wrote about the PRM 151 clinical trial that we got to know her a lot better. She was on that trial,.. as she had been on three others before that.  She believed in the drug, it was helping her.  She started a Facebook group, PRM-151 and wrote a bit about it aln the Forum,.

It’s a good place to start telling her story in her words.

https://mpnforum.com/prm-151-trial-verdict/

After a long period of increasing fatigue) I was in a hem/onc office and after looking at my blood slides and counts he was very serious.

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.

I did the Revlimid study with prednisone in 2007 for 6 months, then was removed because it was not helping me and the side effects were terrible cramping and diarrhea.

Second study was Pomalidomide in 2009.  In 3 months I had to have 2 blood transfusions. They stopped the study and went back to the FDA with a lower dose. Protocol was revised and I was called to start again.  f=For a very long time some of my counts were normal without blood transfusions. I chose to stay out of study, and would call when I felt I needed to see Dr. V.

Third study was BMS-911543 for 15 months. I began to need blood transfusions every month.  January I had 6 units of blood within 18 days. So we decided to stop the study.

By this time we are in October 2013. Dr. V told me about the PRM-151 study. 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.

In the past I have had a chronic cough that lasted 2 years. Well about December 2013 it came back again. No matter what I do, or doctors nothing worked. So Dr. V had me see specialists there.  Friday they told me it was Gerds. About 5 months ago suddenly I was struck with shortness of breath.  Everything I did I was breathing hard. If I talked to much I was out of breath.  We have all been concerned but there were no answers.  I spoke to my cardiopulmonary doctor locally and he suggest we do a sleep study. Before we even got to order the machine my shortness of breath went away just like it came on…poof it was gone.

It’s been 2 weeks. We continued with the sleep study because there were some distrubing readings. Well I now sleep with a c-pap. I feel a little better difference, but we can use more improvement. My energy level was 0! It was so hard to do anything. At one point I wanted to stop the study because of all the stress of traveling. A brilliant man talked me out of giving up and here I am today still on PRM-151, on the mend from all these things that hit all at one time.  I still need a lot of sleep. But I hope one day I’ll be normal again, or close to normal.

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!

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