I am happy to report that I completed my final round of Rituxan yesterday. My platelets were at an impressive 193,000, a nice number considering I am continuing to drop off the prednisone. I should be off that completely by next Thursday. Then I will wait for my adrenal glands to start working again, after a nice 7 1/2 month vacation. In addition to that, there are further challenges ahead.
I won’t know if the Rituxan has actually worked for a couple of weeks. Studies have shown response times ranging from 4-17 weeks, and each patient is different. I can only hope that I will hold steady so I can finally free myself of steroids, which I plan on never taking again. I have gained 25 lbs over the past 7 1/2 months, my teeth are unbelievable sensitive, my hair is falling out and my poor skin has been through the ringer. Once I get through these final few weeks of side effects I have implemented a plan called “Operation Cheekbones” to get rid of my moon face.
On February 5th, I will be doing a 5k to raise money for the Sylvester Cancer Center at the University of Miami. My team is called Dr. Ahn’s ITP Warriors, and I set a fundraising goal of $500. I wanted to raise awareness that Sylvester not only treats cancer patients, but they are also miracle workers for rare disease patients as well. I have been so fortunate to have a wonderful team with me on this journey. It has given me the hope and inspiration necessary to keep pushing.
On a personal note, I wanted to take a moment to recognize my nurse Heather, who helped me tackle my Rituxan treatments. She was an encyclopedia of information and made the entire process as comfortable as possible. I am so lucky to have met her, and I hope that if I have to do Rituxan again that she will be my nurse!
So today I have been dealing with the typical after-effects of Rituxan. Fatigue, brain fog, and a few stomach issues. It is a relief to know I am done with the infusions, leaving me time to recuperate before the holidays. All I want for Christmas is a nice platelet count!