Tag Archive for: Empowerment Leads

MPN Patient and Care Partner Share Tips for Communicating With Your Care Team

/in , /by

MPN Patient and Care Partner Share Tips for Communicating With Your Care Team from Patient Empowerment Network on Vimeo.

MPN Care Partner, Jeff ,and Summer, who is living with myelofibrosis, share how they communicate with Summer’s care team. Jeff shares how important it is to develop a relationship with your care team and find what communication method works best for you.  

See More from PEN-Powered Activity Guide 12

Transcript:

Summer:

Oh, Jeff. I’m almost out of my Jakafi. I have to get some more.  

Jeff:

Well, I guess we’ll have to give Dr. Tanaka a call, right? 

Summer:

Hi, I’m Summer. 

Jeff:

And I’m Jeff and we’re here to talk to you today about communicating with your health care team, and it’s very important to develop that relationship. Tell folks about our health care team, Summer. 

Summer:

Yeah, we’ve got a great one. We have my doctor, Dr. Tanaka, the nurses and the specialty pharmacy that takes care of my Jakafi. Should I explain about that? 

Jeff:

Yeah. 

Summer:

Okay. The pharmacy lets me know when I need new medication. It tells me when it comes in. I’ll let them know when I’m going to pick it up. They even offer to deliver it but I don’t think it’s a good idea to have expensive drugs delivered to your porch. So of course, I pick up. It’s no big deal. 

Jeff:

And why do we have to use a specialty pharmacy instead of going down to the local pharmacy? 

Summer:

Because they have more time and they really keep track of everything. They let me know if there’s a change, they have a question, everything. I really trust them. And they always tell me when the medicine comes in. And if it seems a little late, they call and let me know. 

Jeff:

The way we communicate these needs is great for us. Every one of you who has a health care team is going to have a different way of communicating and you really need to learn to use it. We’re very fortunate. We use the University of Southern California health care system here and they have a portal online. They call it the patient portal. It’s called My Chart. And you can send messages to the doctor and your health care team, they can send you messages, you can request refills on your prescriptions there, and you could also make appointments and you can view your test results. Summer, you get a test often, right? 

Summer:

Once a month. 

Jeff:

And so, we go in and get that, and within the afternoon they usually have our test results and we can look at them. So, we’re very fortunate. If you have one, if your health care organization has such a system, learn to use it. That is your prime communication way of communicating with your health care team. You may be in a location where you can’t do that, they don’t have such a fancy thing, or your cancer may not require that kind of communication, but whatever way you develop learn to use it. It’s really important to develop a way to communicate with your team. And that’s pretty much it for our subject this month. Till next time. I’m Jeff. 

Summer:

I’m Summer. Bye. 

Jeff:

Bye. 

Importance of Music for an MPN Patient and Care Partner

/in , /by

Importance of Music for MPN Patient and Care Partner from Patient Empowerment Network on Vimeo.

 MPN Empowerment Leads Jeff and Summer discuss the role music has played in both of their lives and how it has specifically helped amid Summer’s myelofibrosis diagnosis. Watch now to hear how music has influenced their lives.

Transcript

Jeff:

Hi, I’m Jeff.

Summer:

I’m Summer and this is Zelda.

Jeff:

And we’re your Patient Empowerment Network Leads for the myelofibrosis portion of the Patient Empowerment Network. Here to talk to you today about music. How music affects you when you have cancer. Is it good, bad, or what? And what do you think, Summer?

Summer:

I think it has a very positive effect because, for example, I just finished doing an hour of Zumba dancing and I love Zumba music, and I now have 5,00o steps on my Apple Watch. I think it can really raise your endorphins and be very good for the immune system.

Jeff:

Well, research proves Summer absolutely right. There’s been a lot of research into how music affects the body. Music is a tremendous de-stresser, it helps people relax, and all of those things affect your physical body. Summer has talked at length about how the mind and body connection works.

For me as a caregiver, it’s a little bit different. I’m a musician. I play the piano. I play in a band and I love to listen to music. It takes me to other places and it relaxes me. And it takes my away from, similarly, it takes me away from the stresses that caregiving can sometimes provide. Now we don’t have too many, but it does. So really that’s how we would feel about music. We have two different approaches to it. Music is definitely a positive in dealing with your myelofibrosis.

Until next time, I’m Jeff.

Summer:

Summer. I’m Zelda.

Jeff:

We’ll see you later.

Patient and Care Partner Discuss Value in MPN Care

/in , /by

Patient and Care Partner Discuss Value in MPN Care from Patient Empowerment Network on Vimeo.

 MPN Empowerment Leads Jeff and Summer talk about how they define value in Summer’s care. For instance, one important thing that brings value to them is how accessible their healthcare team is. Watch now to hear more about what they value on Summer’s journey with myelofibrosis.

Transcript

Jeff:

Alright Summer, I’m just looking at the bill for your last doctor’s appointment.

Summer:

Wow.

Jeff:

Do you think we get good value for our money? Oh. Hi, I’m Jeff.

Summer:

HI, I’m Summer.

Jeff:

And we’re your Patient Empowerment Network Network Leads for myelofibrosis. And we’re here to talk to you today about how do you define value for your healthcare dollar. What do you think is important for healthcare dollars, Summer?

Summer:

Well, really important is that the doctor and all the medical staff really listen to the patient and really aware of how the patient is doing everything. Also, that they need to explain because my doctor will come up with little charts with funny little numbers on them and something about blasts which doesn’t have anything to do with blasting like having fun. So, she’ll come out with that and explain all that.

Also, to let you know what’s going on with your medication. Where I get my medication is Walgreens Specialty Pharmacy and they’re very good. They always call me about any changes. They let me know when the order’s in. They always offer to delivery it, but I don’t think that’s a very good idea so I do pick it up.

Also, that they see the patient as an individual and respect their individuality. For example, I’m big on mind-body connection. I think there’s a huge connection doing exercise daily, eating pretty good, but I do like my sweet treats too. I don’t give that up. And Zelda, she just likes to lay around, and that’s what she enjoys. Don’t you, baby?

Jeff:

Well, a couple of things that I think are important for your value for your healthcare dollar, one is accessibility. Is your doctor easily accessible? And with the UCSD system that we’re on, we have great accessibility. They have a wonderful patient portal on the web that you can go and find out all of your results. I don’t have to keep a book of past blood test results because it’s all on the web and I can see it. And if we want to get in touch with them, there’s a way to send them a message and  they get in touch with us within the day for sure. And we can make an appointment that way. It’s really, really a good system. So, accessibility is one thing that’s really important.

Another thing is availability of specialists. Myelofibrosis is a very, very rare and unusual disease and there aren’t a lot of specialists in the whole country. We’re truly blessed to have Dr. Tanaka who is a researcher and a specialist is myelofibrosis and myeloid diseases be on call when Summer showed up at the hospital with her first incidence that led to this diagnosis. And UCSD has a number of doctors that are specialists, so we are fortunate. But you need to find a healthcare system where you have enough specialists.

And the final thing that I can think of is, you need to be your own advocate. The doctor is doing the best they can, he or she can, to solve your problem and to work within what they think is normal standard, normal practice, but they’re not mind readers. They can’t understand what is concerning you. You need to speak up, ask questions, and let the doctor know your concerns so they can address them. That’s the patient’s job as opposed to the healthcare system or the doctor’s job. Speak up.

So those are some of the ways we define value in our healthcare ‘Til next time, I’m Jeff.

Summer:

Summer. Zelda.

MPN Patient and Care Partner Breakdown Terminology

/in , , /by

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?

/in , , , , , , , /by

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

/in , /by

 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!