by David Wallace
I got my first shot of Pegasys 3 days ago, along with my local doctor’s agreement to monitor my counts. It was not without a HARD push on my part, as Doc was still pushing the benefits of HU (hydroxyurea), while reinforcing the numerous risks with Peg.
For once, I was glad to be hurting from sharp bone pain, as it clarified my objective and left no doubt about the direction I was going to take. I had Peg in the cooler with me, ready to inject. I brought in the article on Interferon from MPNQJ (kudos to Zhen on his outstanding publication), with key points highlighted. It was the first time doc actually read the information and kept the copy to “study up.”
After keeping me waiting over 2 hours, it was 5pm, and he said, “We can’t do the injection today.” I said, “doc, we will have to do it today as I am hurting and have the medicine ready to go, so either you or your nurse will need to help me out.” He called the nurse in and she took me back, showed me the process and did the first injection. When the doctor finished our visit, he actually shook my hand. THAT was a first!
So far, shot #1 has been well tolerated. I should also mention that none of this would have taken place without a visit to the Mayo Clinic, and getting the “upfront agreement” from my new local heme that he would work under the direction of an MPN expert. For those of you who do not know me, I publish a very informative MPN website, PVReporter.com. Check it out and pass the word along to your friends and groups, thanks!
Originally posted December 7, 2013 on social media.
September 14, 2023: Blood Cancer Awareness Month update
Folks, the message is the same I’ve been sharing since 2013:
- Learn about your illness
- See an MPN specialist
- Become your OWN advocate
It’s so important to advocate for yourself, your life may depend on it!
