MPN Spotlight: Nick Napolitano
As MPN Peoria continues to raise awareness of MPNs, we hope to create a community of support and understanding. We thank our friend, MPN patient and advocate, Nick, for sharing his story about what it has been like living with an MPN.
1. What form of MPN do you have, and how old were you when you were diagnosed?
I was diagnosed with Jak2 positive Polycythemia Vera at the age of 37 (about 4 years ago). I pulled three sets of blood work from about 10 years prior to my diagnosis, and it showed my RBC and platelets were very high, so I would imagine I had it a lot earlier. I also recall having very similar symptoms in High School, but as with a lot of MPN patients ignored them.
2. Did you have any symptoms that led to your diagnosis?
Yes, severe itching and fatigue. Initially I went in for a routine physical, and the bloodwork showed elevated RBC and platelets. I was told I had two options, to monitor for a year or see a hematologist/oncologist. After some prodding from my wife Kara, I opted to see a hematologist/oncologist.
3. How has living with an MPN affected your quality of life?
Yes, there have been times that the symptoms have caused me to miss vacations, family celebrations, and I have also had to miss coaching my son's baseball team.
4. What are the biggest challenges you face living with an MPN?
The biggest challenge is the randomness and unknowns of when and where the symptoms will be active and for how long. Also, the wide range of symptoms I deal with from fatigue, itching, bone pain to gout. That is very frustrating.
5. How is your MPN managed? Any medications or specific therapies?
Currently, I am being treated with phlebotomy only and aspirin; however, my doctor and I have discussed moving to Ropeg-interferon once that is approved by the FDA.
6. What would you like people to know about MPNs?
We deal with a range of symptoms directly related to the cancer and "silent" symptoms like mental health that I am not sure are being heard. I have dealt with depression personally and still do as I think about a shortened life expectancy and the like. I have heard the same from many patients. I know there are resources out there for this, but not so much for MPNs. We need to bring mental health to the forefront in MPNs. There are many symptoms for an MPN patient that a doctor tries to manage, and mental health should be at the top of that list.
7. Why is continued research into MPNs so critical?
Through my personal diagnosis and experience, I've come to understand firsthand how vital help is for the cancer community as a whole, but MPNs in particular. Continued research is essential to help understand the unmet needs of the blood cancer community so the research is as targeted as it can be to ultimately find a cure.
-Nick, MPN Patient
Our primary goal at MPN Peoria is to be able to financially support research for new treatments and ultimately for a cure for these rare blood cancers called MPNs, all the while supporting and empowering those afflicted by the disease. We thank YOU for your continued support and for all your prayers.
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