Saving our lives is a must, and my wish is to see my son grow up and grow old with my wife, enjoy my family, and maybe see grandkids. I want to prolong my life as much as possible with drugs such as interferon, so why not donate to it.
Ryan Tellini's Journey with Interferon
The MPN Research Foundation first met Ryan Tellini last fall when he shared his story of living with Myelofibrosis during Blood Cancer Awareness Month. This Spring we caught up with Ryan again in the hopes of learning more about how Interferon is working for him and how he’s managing living with MF and being a new father.
Why were you prescribed Interferon?
I was prescribed Interferon the classic version (Roferon - Roche brand) as a safer nonchemotherapy alternative to hydroxyurea.
How long have you been taking the drug?
I have been on Interferon for over 3 years (started in 2016.)
What side effects have you experienced from Interferon?
The first time I took interferon I didn’t tolerate the drug well. I had very bad flu-like symptoms and deep bone pain. I tried the drug again a week later and had no reaction to it. I did feel some thyroid pain at one stage early on but it seems like my body has adjusted itself to the drug.
How have they impacted your life?
Side effects for me are that there is some effect on my hormones. I can get angry at times and stress over really minor things sometimes, and my sperm seems to thicken up if I’m dehydrated. But I seem to counteract it with drinking a lot of water and I practice mindfulness meditations all the time now (I can do them in my head even without people even knowing.) I did see a clinical psychologist for 6 months who really helped me. For me I go about my life as normal most days. Some days I forget I’m even sick, but other days the bone pain can kick in like a gout sensation in my hips, legs, and feet. I also suffer from dizziness at times. If I stand in the same spot for too long I don’t feel well. Those days can really affect me mentally; it's like a chess game in my head every day.
Is Interferon easily accessible to you?
I'm really lucky here in Australia thanks to the PBS (pharmaceutical benefits scheme) medication is subsidized for really sick patients and has to be granted permission from the government from my specialist. I order my medication on a special script and give it to my local pharmacy and usually, I can pick it up in a day or two.
Have you had any struggles?
A struggle for me is mentally living in fear of the disease not knowing what my future has installed for me, where am I going? Will I be ok tomorrow? Will I wake up? How many years do I have left of my life? But I live my life from day to day. I've got lots of love around me, my awesome family and friends, and I think of my son and my wife constantly.
How has that affected your treatment/life?
My life is quite normal but I’m way more compassionate and I'm a much better person than I was before my diagnosis. I learned that life is short. I try and joke around and give as much of myself in each day as possible.
Has Interferon been a successful treatment option for you?
Interferon is a lifesaver! I would not be here today without the drug. I don't like the injections but must inject three million units every two days. I think that if it’s saving my life so be it. My platelets have gone from 1.2 million units to the 400's. I suffered from bad chest pain for many years which I no longer have. My hematologist says to me, "Stay on the interferon Ryan; it's working." I've asked her about the newer versions of the drug (Pegasys) but she’s happy that this version of the drug is working for me.
How has that impacted your life?
The impact for me that I never liked needles. I used to faint at the sight of one but you soon become a self-taught expert. As for traveling it just means if I ever go on holidays I need a fridge or a cooler box with ice packs. If I'm going away for a few days, the interferon is coming with me.
How does that make you feel?
I feel like my time on earth is limited. I feel that I won't be here as long as I'd like to be. I want to see my son grow up. I want to be there for him when he is older. I just keep thinking that someone out there will have a cure one day. And I really can't wait, like a newer version my wonder drug interferon or the research being done with the MPN-RF or the research in Denmark for the CalR vaccination.
What do you think about MPNRF’s Interferon Initiative?
I think it's great to make people aware of the drug and that the drug works. Can the drug be improved? Can more research be put into the drug? What does the future hold for the drug and future of it? For people like me, it’s a wonder drug. I think that research is everything, and more research needs to be done.
Do you think that researching Interferon is important? If yes, why?
The first mobile phone worked didn't it, but look at the difference say between a Nokia 5110 to a late model iPhone or Samsung phone. That's the way I think about research!
What would you say to someone who is thinking about donating to the Interferon Initiative?
You may have just saved lives, thousands of lives just like mine. The MPN-RF is something that is for the patients living with MPNs and for many it’s difficult. Saving our lives is a must, and my wish is to see my son grow up and grow old with my wife, enjoy my family, and maybe see grandkids. I want to prolong my life as much as possible with drugs such as interferon, so why not donate to it.
What are your thoughts on fatherhood and having MF?
Fatherhood to me means to be a father figure who is around for my son and my wife, also to be strong and to be there whenever they need me. I live in fear of not being here for my family because of my myelofibrosis condition, but I also fight it for them. My wish is that my son will be a hematologist and help people like me, or even cure me one day, but whatever direction he chooses in life I will support him regardless.
These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis. It does not represent the views or opinions of anyone associated with the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.