Tag Archive for: Empowerment Leads

MPN Patient and Care Partner Breakdown Terminology

MPN Patient and Care Partner Breakdown Terminology from Patient Empowerment Network on Vimeo.

MPN Empowerment Leads Jeff and Summer share how overwhelming medical terminology can be. Jeff encourages everyone to ask your healthcare team questions whenever you need to. He shares that asking the right questions is part of becoming an empowered patient.

Other Videos Featuring Jeff and Summer:

Roles Reversed: Taking Care of Your Care Partner

Patient and Care Partner Address the Mental Aspects of an MPN

How Can Care Partners Combat Burnout


Transcript:

Jeff:

Hi, I’m Jeff.

Summer:

I’m Summer and this little darlin’ is Zelda.

Jeff:

And we’re your MPN Network Managers (Editor’s Note: Network Managers are now referred to as Empowerment Leads) for the Patient Empowerment Network. Here to talk to you today about medical terminology, which often is very confusing. Isn’t it, Summer?

Summer:

Yes, I would say very confusing. And Dr. Tanaka told me oh, you need to take a bone marrow test to determine what kind of myelo, I’m writing this down, myeloproliferative neoplasm. Anyway, Jeff can explain all that to you. To determine all that and I thought, oh my god this is so confusing. She said – she kind of set me straight and made me realize that this is really important.

Jeff:

And, so, we didn’t know, neither of us, what these things meant originally. Dr. Tanaka explained some of it to us pretty well, but then I went home and I’m interested in this, so I became, I’m Summer’s caregiver. And I started doing research, and that’s what I’m going to give you some pointers that I found.

First of all, specific words you can probably Google and find on the web and they’ll tell you want it means. There are a number of organizations that specialize, in our case myeloproliferative neoplasms and blood diseases. The LLS, Leukemia and Lymphoma Society is one of them, and the MPN Research Foundation is another. And there is plenty of information here on Patient Empowerment Network about these diseases.

So, you need to find out the answers to the questions that you have. And you will probably do some of this on your own because you’ll have, when you have your appointments with your doctor you need to ask the questions. There’s no question that should not be asked, and your doctor will be able to tell you. If  you are blessed with a good care team, they’re going to have the ability to explain to you what’s going on with your disease in simple terms and terms that mean something to you. And we are truly blessed to have Dr. Tanaka who is able to do this wonderfully.

So, ask those questions, do your own research, you need to become an empowered patient. That’s what we had to be here at Patient Empowerment Network. So the more you know about this unusual disease, in our case – in Summer’s case, myelofibrosis, or other myeloproliferative neoplasms, which by the way that means cancers of the blood produced by the bone marrow, and we found that out. So, you need to become an expert on this kind of stuff yourself because you need to become an empowered patient. That’s our advice to you.

Until next time, I’m Jeff.

Summer:

Summer and I have another bit of advice. Being married or involved with someone who, like Jeff, had all this interest, if you’re not into medical things, helps a lot because I never really think about it very much. I depend on Jeff who does a great job.

Jeff:

Thank you very much, dear.

It’s part of our concept that we’ve told you about before. You’re really apart of a team. You have the caregiver, the patient, and your healthcare provider. So, become a strong team and you’ll be an empowered team.

Until next time, I’m Jeff.

Summer:

I’m Summer and this is Zelda.

What Healthcare Trends Are Observed in MPNs?

What Healthcare Trends Are Observed in MPNs? from Patient Empowerment Network on Vimeo.

MPN Empowerment Leads Jeff and Summer share trends they’ve observed since Summer’s initial diagnosis of myelofibrosis a few years ago. They share recent studies they’ve viewed and are following. Jeff gives a charge to viewers to be your own empowered patient and keep up with research when you can. “Be your own advocate.”

Videos Featuring Jeff and Summer:

Roles Reversed: Taking Care of Your Care Partner

Patient and Care Partner Address the Mental Aspects of an MPN

How Can Care Partners Combat Burnout


Transcript:

Jeff:

Hi, I’m Jeff.

Summer:

And I’m Summer.

Jeff:

And we’re your Network Managers (Editor’s Note: Now referred to as Empowerment Leads) for Myeloproliferative Neoplasms for the Patient Empowerment Network. And, we’re here today to talk to you about healthcare trends in MPN medicine, basically.

Summer:

I was diagnosed with myelofibrosis over three years ago. And at the time, they could only offer me one medication, Jakafi (ruxolitinib), which for me work but doesn’t work for everybody. So, I’ve had good luck with it and I haven’t really had any other symptoms.

Jeff:

But this is an exciting time in the MPN medicine because since that time, there have been two more medications released to control myelofibrosis. One called fedratinib. And just last month, pacritinib was released and approved by the FDA. So now there are three medications that can be used to treat the symptoms of myelofibrosis.

There are currently no medications that can cure a person of myelofibrosis. The only cure, currently, is a stem-cell transplant. But some exciting developments are happening that may even be able to cure it.

I just read an article that some scientists have found that the medication used in breast care – breast cancer treatment causes remission in bone marrow fibrosis in mice. So they’re working along the way to see if that will be effective in humans, eventually. And that might be, potentially, a cure for myelofibrosis. Those are exciting trends in the MPN research and medicine world.

Summer has other information that’s useful though.

Summer:

Yeah, that’s really exciting about the new medication. I was looking up what the Mayo Clinical has to say and being happy and having a good attitude really enhances the immune system. There is a chemical that you get that comes from being happy that really, really keeps the disease from being more serious.

So anyway, that’s what I believe in because I’m an actor and so I don’t get into the medical thing, but I know Jeff is brilliant for it. So, that’s exciting all along having a good attitude and the new developments in medication.

Jeff:

So, keep those in mind, consult with your healthcare provider, and you need to be your own empowered patient and keep up with the research by yourself. It’s all available online, no problems at all, just Google it and you’ll be able to keep up yourself. You have to be your own advocate.

Until next time, I’m Jeff.

Summer:

I’m Summer and, wait a minute, this is our little baby, Zelda.

From Network Managers to Empowerment Leads

 At Patient Empowerment Network (PEN), we believe it is our duty as advocates to reach as many patients as possible by creating and curating relevant content. This includes our PEN-Powered Activity Guides, #PatientChats, blog posts, and educational media written by cancer patients and care partners for cancer patients and care partners.

 As Empowerment Leads (previously Network Managers), each one of us strives to create content that is relatable and easy to understand, all while promoting PEN’s mission “to fortify cancer patients and care partners with the knowledge and tools to boost their confidence, put them in control of their healthcare journey, and assist them in receiving the best, most personalized care available to ensure they have the best possible outcome.”

As Empowerment Leads, we look to guide patients in the right direction when it comes to quality, comprehensive cancer care. While each one of us comes from a background that is unique, as members of a community of people who have been touched by cancer in one way or another, we have found that we’re more alike than we initially understood. As volunteers, we aim to empower PEN’s community by using our various talents, including writing, conducting interviews with physicians, and producing comedy shows, amongst others. We do this because we’ve been there, and we know what it’s like to have to go through trying times when it comes to a devastating diagnosis, such as cancer.

Furthermore, Empowerment Leads recognize the importance of having someone to speak to. We can have all the education, but sometimes you want to speak to another person who can relate to what you’re going through. Each one of the Leads has their own email you can send a message to at any time with any questions you may have. There’s also a text line PEN recently created, all for the purpose of getting information to the right person at the right time. Please note, though, that any information passed on does not constitute as medical advice, and information should also be discussed with your healthcare team.

Finally, although there has been a name change, the power of our program has not changed. We are here for the patient community and always will be. That is our mission, and we’re sticking to it!