Meet MPN patient Diane Hilton and read about her 31-year journey with Interferon.
Why were you prescribed Interferon?
I was prescribed Regular INF in 1988. There was some question as to whether I had chronic myelogenous leukemia or Primary thrombocythemia. My platelets were 1.5 million and all my other counts were elevated as well. I also had a fragmented chromosome. The doctors felt it could be a Philadelphia chromosome. But after I began INF treatments it disappeared. And it has never reappeared. In 2017 my bone marrow showed that I had a Jak2 mutation, the V617. With INF therapy, my counts at present are stable.
How long have you been taking the drug? What side effects have you experienced from Interferon?
I began taking regular Interferon in 1988. My dose was 7 million units for 7 days a week. Over a period of 5 years, it was reduced to 3 million units then to 1.5 million units for 3 days a week. I continued this maintenance dose until I turned 65 and I switched to Medicare and supplement insurance. They refused to pay for the Interferon. I then had to take Agrylin. This drug did nothing for my counts and they continued to increase while my spleen became enlarged. Then I was switched to Hydrea again. The same problems appeared as before. Extreme fatigue, diarrhea, and my blood counts were no better. So, my oncologist made a plea to the insurance again and they finally agreed to pay for Pegasys (Pegylated Interferon or Peg). The peginterferon has fewer side effects and I only have to take one injection of 45 mgs per week.
On regular INF, I felt like I had the old-timey flu with every injection and my depression was bad with higher doses. My oncologist prescribed antidepressants for that. Around 1995 I had a muscle detach in my right forearm without any injury. I had to have that surgically repaired. A year later, my left arm had the same problem. So, more surgery. About 2 years later I had a hamstring rupture, again without injury. About 4 years later I had a tendon rupture in my upper left arm. I had to be careful with lifting items. I also developed neuropathy in both feet and now it’s beginning in both my hands. I continue to have muscle aches and pains BUT I’m still here.
How have they impacted your life?
When I was diagnosed. My 4 children were young and in school. I learned that I was no longer a super mom. Instead of full course breakfast, everyone had to eat cold cereal. Many evenings when I managed to cook dinner, the smells would make me nauseated and I would retreat to the bedroom while my family ate their dinner. Also, I developed a short-term memory loss. If I was cooking, I had to remain in the kitchen at all times. I had never burned anything in all my years of cooking. But if I left the room, I would totally forget I was cooking. I lost several pots and pans.
I also learned to just say no to many things. I had to set my priorities. Also, I learned to set goals. I wanted to see my children graduate, get married and have babies of their own. I did see those goals. One of my grandsons graduated last year. Next week one of my granddaughter’s graduates high school. I forgot to mention that I’ve always had a love for airplanes. In 1993 I became a licensed pilot. So, make that bucket list and set some goals. And most importantly, just live.
Is Interferon easily accessible to you? Have you had any struggles?
In 1988 my oncologist said it didn’t matter if my insurance didn’t pay for the INF. He said I could pay him $10 dollars a week if necessary. But my insurance did pay. Currently, I’m not having any problems getting the Pegasys. My pharmacist found it in a 180mcg vial. My cost is $400. I get 4 injections from that.
How has that affected your treatment/life?
It was difficult having to take meds that didn’t work. My oncologist says for now this is my only option. I can only hope that they continue to make INF and that it’s easier for everyone to get if needed.
Has Interferon been a successful treatment option for you?
Absolutely…I believe it has kept me alive for 31 years. My original oncologists said I would only survive about 10 years. Thankfully they were wrong.
My husband died suddenly last year. He was a retired Marshal and he gave me my injections most of the time. Now I’m on my own. We always thought I would be the one to die first…
How has that impacted your life?
Well, I must say that surviving for 31 years is the greatest impact. I have also met many cancer patients over the years with all kinds of cancer. Getting up every day and choosing to fight this battle of cancer head-on keeps me going. Those that just give up don’t last very long. Make time for laughter too. Sometimes laughter is necessary medicine.
How does that make you feel? What do you think about MPNRF’s Interferon Initiative?
My profession is a nurse. But my real education came as a cancer patient. I’ve always been involved with my treatment plan. I give myself injections.
I think the Interferon Initiative is awesome. I’ve always been curious as to why INF works on some instead of others. I hope they will continue to produce INF and make it even better. I would even give blood and DNA for research if it would help. I’ve often wondered if anyone has taken it as long as I have.
Do you think that researching Interferon is important? If yes, why?
Research is so important. How else can they perfect meds without research? INF has changed for the better since 1988. It should be available to anyone that needs it. And hopefully, the cost will improve too.
What would you say to someone who is thinking about donating to the Interferon Initiative?
I would say just go for it… with your help, I believe more people may live. It takes everyone to do their part. Most people these days know someone that has some type of cancer. Please help blood cancers by donating to the INF initiative. The life you save could be your own.