Tag Archive for: MPN Empowerment Leads

MPN Patient and Care Partner Share Clinical Trial Experience

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MPN Patient and Care Partner Share Clinical Trial Experience from Patient Empowerment Network on Vimeo.

MPN Empowerment Leads Jeff and Summer share their experience participating in a COVID-19 clinical trial. Jeff believes that if you get an opportunity to participate in a clinical trial, you should take it. There are so many new medications in the pipeline for MPNs and you can help change the standard of care for future patients.  

See More from Jeff & Summer

Transcript

Jeff:

Hi, I’m Jeff. 

Summer:

Hi, I’m Summer and hi, I’m Zelda. 

Jeff: And we’re your Network Empowerment Leads for the Patient Empowerment Network and we’re the leads for the myelofibrosis section, which Summer is a myelofibrosis patient. And we’re here today to talk to you about clinical trials. And we’ve had some experience, but what we’re going to tell you about today is not a trial that deals with myelofibrosis. But our experience in the COVID-19 vaccine trial for Moderna at University of California San Diego. And tell us about how it started, Summer. 

Summer: Well, I’ve never been in a trial test before, and neither have Jeff. We went to UCSD, to where it’s conducted, and they were very friendly, very nice, very encouraging. But the strange thing, one of the things is I thought there’d be a huge waiting room. And they took us right in, and the whole time we were there, I didn’t see anyone other than the staff. So, I went in one of the rooms, and various doctors and nurses and assistants came in to take blood, to take my temperature, to ask me medical questions, things like that. The whole thing took probably about an hour and a half, and they were very encouraging. And then the last person that came in said, well, I’ll be back in a few minutes, and I’ll bring the vaccine in. So, I thought, oh, I guess I made it. But then when they came in, he said, no, you consulted with another doctor, because I have myelofibrosis that could slant the test. So, I wasn’t able to sign up and help people. But I do remember another thing about COVID. I was in the first group, because I’m older and have a disease, to get the vaccine. And I remember it was at Petco Park in San Diego, and there were so many people there that people had to park blocks from there. And that’s fine. Walking is no big deal. There were a lot of really old people that could barely walk, and they were going, I’ll never forget that. 

And there was one woman that was very overweight. She was in a walker. The poor old thing could hardly walk. So, I remember I walked behind her the whole time, because I thought I can call for help if anything happens. But I still have that picture. And here’s Jeff’s view. 

 Jeff:

So, I went up with Summer to sign up for the vaccine test as well with UCSD. We thought we could make a difference and help. So, I went through the same, they gave everybody the same thing. Different doctors and nurses and assistants came in. They took your blood. They took your medical history and so forth. And then they went out of the room and left me there. And they came back in, just like Summer. And for me, they came back in with a hypodermic needle filled with vaccine or placebo. And they gave me the shot. And of course, they don’t tell you whether you had the placebo or the vaccine. And they sent me home. But before I went home, they had me load this little app onto my phone. And I have to fill it out every Sunday. I’ve been doing that now for about two and a half years, I guess. Whether you just got a couple of questions and you submit it. It’s part of their program. And they also periodically… I have to come back for other appointments. And they actually, of course, made a second appointment. So, I got the second shot in the Moderna combination. And they kept, each time I came back, they’d take blood. They wanted to see how the blood was forming antibodies, I guess. And so, I kept coming back. And they didn’t tell you what was happening until finally, I got an email that said the doctor was going to have a Zoom presentation or a web presentation. And basically, he came on and he gave the statistics that they had collected and said that the vaccine seemed to be working very well which was really nice to see. But we stayed in the… We would still stay with them because they wanted to see how long it lasted. And whether your antibodies would last. 

 So, I’ve been still going regularly. Eventually they gave us the third shot, the booster shot. And I haven’t had any word whether I’m supposed to have the next booster shot. I have an appointment with them in about two weeks to go. They call you back so they can check your blood. And presumably I might get another vaccine. So, it was a very interesting experience. And like Summer mentioned, I didn’t hardly ever see any people there except the staff. The place was clean. They were very, very friendly. It seemed to be well organized and run. And we felt happy. I felt happy to be part of the solution for COVID anyway. And that’s my experience. 

So, our thought to you all was if you get an opportunity to participate in a trial, take it. Especially for those of you with myelofibrosis, there’s a lot of medicines coming down the pipe. They may need some people to be in trials. If you meet the requirements, go ahead and take it. It’s a worthwhile experience. And you can maybe be helping medicine. That’s it for this week. I’m Jeff. 

Summer:

I’m Summer. I’m Zelda. 

Jeff:

See you next time. 

Summer:

Bye. 

Importance of Music for an MPN Patient and Care Partner

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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

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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

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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?

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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.