July 31, 2022, Blog Entry – fourth PRGN-2012 treatment at the NIH.
On July 27, 2022 I travelled to the NIH/Bethesda, MD for my fourth treatment in the four-treatment series of this research study. My spouse travelled with me on this trip, as it was possible that I would be having surgery. We checked-in to the Residence Inn in Bethesda and once again had a nice evening of dinner and walking around downtown Bethesda.
On July 28, 2022 we caught a 7:19 am NIH shuttle at our hotel and arrived for my first scheduled appointment at the NIH at 8:00 am. After a verbal Covid screening at the entrance, we proceeded to Phlebotomy where 12 vials of blood were drawn from my left arm. My next appointment, at 9:00 am, was a Covid-19 nose swab test. At 10:00 am I met with my research team. This meeting consisted of a verbal interview to see how I was doing and then a scope to see what was going on in my larynx. The scope revealed that there were two small areas of papilloma, not located on my cords and therefore not effecting my speaking voice. In the past, I would have elected to not have surgery as this was a very small amount and was not impacting voicing. However, after discussion with the team it was decided that I would have surgery to remove this papilloma. The reasoning given by the team is that by keeping the amount of disease to a minimum through surgical removal, it would give the PRGN-2012 drug the best chance of clearing the infection. This seemed reasonable to me, so I consented.
I was hoping that I would not have any disease at all at this point in the trial. The doctors, although disappointed by this small amount of disease growth, felt that it was much too early to tell if the vaccine was working or not. I had not even had the fourth shot yet.
The next morning, July 29, 2022, I arrived at the NIH at 11:00 am. While in the surgery waiting room, I emailed my NIH nurse and asked her if the PRGN-2012 drug could be prepared by the pharmacy to be ready for me once I came out of surgery. I took this proactive approach because at my last (third) NIH visit I waited for three hours for the vaccine to be prepared. I wanted to try and avoid that much waiting time after surgery – a time when I just want to go home as soon as I can. The nurse responded, understood this request and was happy to see what she could do. I was then prepped for surgery, entered the OR and had the direct laryngoscopy procedure.
Upon waking and after some recovery, I proceeded to the day hospital for the next injection of PRGN-2012. It took only half an hour for the drug to arrive! A big thank you to my nurse and the pharmacy for making that happen. I received the injection in my right upper arm this time and remained under observation for 30 minutes. With no adverse reactions, I was released.
My side effects from this injection have been minimal – just some mild fatigue.
I will return to the NIH on September 7, 2022 (six weeks after my last visit) for another exam and follow-up. After that, there will be another exam and follow-up in six weeks and then a final exam and follow-up 12 weeks from then.
We want to communicate how we continue to be positively impressed with the facility, the staff, the care and the service that we receive at the NIH. It continues to be a great experience at a marvelous place! Each time, we leave the NIH feeling very grateful for the opportunity to be a part of this research study.
Regarding monetary costs for this fourth trip to the NIH, the following was our experience. The NIH paid for my flight to and from my home airport to Baltimore/Washington International airport. They did not pay for my spouse’s flight. They provided a free taxi from the airport to our hotel. The three nights in the hotel were covered by the NIH. Meals were on our own. Transportation from the hotel to the NIH is via a hotel shuttle or a taxi – both paid for by the NIH. You can also take the DC Metro at your own cost. A taxi returned us to the airport at the end of the stay with no charge to us.
We are very grateful that most costs associated with participating in this research study are covered by the NIH!
I would like to let the RRP community know that this research team is actively seeking additional candidates for this PRGN-2012 vaccine trial. If it seems right for you, I highly recommend it. Contact Dr. Clint Allen at clint.allen@nih.gov and/or Dr. Scott Norberg at scott.norberg@nih.gov
Kim McClellan to speak at White House Rare Disease Forum
February 28, 2024
On Wednesday, February 28, as part of the Biden-Harris Administration’s goal to improve health outcomes, the White House Office of
