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An Empowered Patient’s Guide to Creating a Medical Team

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Published on October 30, 2020

How to Find the Best Team Care for Your Needs

If there is one thing we know about cancer treatment, it is that it truly takes a village to get the care you need. But with so many sectors of healthcare, where does one even begin? Listen to our guide for empowered patients who want to find the best team care to find out. We will cover how local oncologists can help patients navigate their way to MPN experts and major cancer centers, how an oncologist can pair with an expert consultant to allow at-home treatments while still benefitting from the most up to date research, and more.

MPN Patient, Laura DeRose, shares what she has learned from her 11-year journey with myelofibrosis and working with an oncologist who advocated for her access to the best care available, including how to prepare for medical appointments and start a discussion with your doctor about adding an expert to your medical team. Dr. Thomas LeBlanc, Duke School of Medicine, explains his experience working with local oncologists to allow patients to remain in their homes as much as possible.

This program is sponsored by Incyte. This organization has no editorial control. It is produced by Patient Power, and Patient Power is solely responsible for program content.


Transcript | An Empowered Patient’s Guide to Creating a Medical Team

What Was Your Route to Finding an Oncologist and Myelofibrosis Specialist?

Patient Power welcomes myelofibrosis patient, Laura DeRose and MPN specialist, Dr. Thomas LeBlanc to discuss how a local oncologist partnering with experts from major cancer centers can create a powerful medical team.

January 2009, Laura was diagnosed with myelofibrosis JAK2 positive at the Cleveland Clinic. She was given a life expectancy of 3-5 years. Laura and her husband decided to move to Hawaii and met the local oncologist, Dr. DeSalvo.

Laura DeRose: 

I thought I just needed to change my life. I took some time off and just slept. There were no medications for me at that time except for baby aspirin and Dr. Desalvo, or I call him Dr. D, he was phenomenal. I met him on the big Island, and I was his only MF patient and well, the entire state of Hawaii. But he had a contact in UCLA. So, whenever there was a bone marrow biopsy, he'd sent it. I was declining quickly at this time; my spleen had enlarged rapidly.  

We'd get the information back. He asked questions, told me right off he didn't know much, but we’d find the answers. And at this point, we started hearing more from the support group on Facebook about stem cell transplants. So, he got in touch with Dr. D at Seattle Hutch. And so, we went there where I learned an enormous amount of information more than I ever had on myelofibrosis.

Dr. LeBlanc: 

Many physicians haven't seen it before or aren't very familiar with it. And it's really, really important to find a local oncologist who can partner with you to identify what he or she does know and what he or she does not know and to fill in those gaps with the help of experts and other sorts of resources. And some are very willing and able to do that, and some are maybe a bit more prideful about it and not willing to ask for help. But with rare diseases like this, it's absolutely critical to find a champion.

Dr. Deeg, from the Hutchinson Cancer Center in Seattle, and Laura’s local oncologist, Dr. DeSalvo worked together to create and execute a treatment plan for Laura.

Laura DeRose: 

And Dr. Deeg's approach I thought was excellent. He had a tape recorder for us and one for himself so we could take it back to our doctor after we were done. And I did not qualify for stem cell, nor do I now. However, the ruxolitinib (Jakafi) was just coming out and he recommended the Jakafi and that's when I went back to Hawaii. We got me on that really very quick.

Dr. Mesa suggested adding peginterferon alfa-2a (Pegasys) to the Jakafi. 

When I got back to Hawaii, before I could start the Pegasys my hemoglobin tanked to six within three days of arriving home. They pulled me off the Jakafi, and I became very ill for the next year. A rebound. And at this time Dr. DeSalvo, we sat down and had a good talk and it was time where he said, "It's time for you to go back. You need to be somewhere near specialists where research is being done, where trials are being done to potentially save your life." And it was with that confidence in him that we made the trek back to mainland. 

Laura and her husband moved to South New Jersey to be near family and to access a new medical team member. 

And I go to Penn Medicine. They have a local hematologist, again admitted he wasn't the one, didn't know it and we didn't get along that first meeting and I had done a lot of research over the years and I came back and made another appointment just as a consult and I said, "I need more from you. I need a cowboy. I need somebody who's going to run in and do whatever he can to save, to find a way to keep my quality of life up, to do everything we can and find, to treat me in this myelofibrosis." I said, "There has to be more." We're hearing things on support groups, but basically>, so many of us are on our own researching.

What Advice Do You Have for Creating a Successful Care Team?

Dr. LeBlanc: 

Just anybody who's facing a cancer diagnosis, I think probably should strongly consider seeing a specialist at certain key points in their illness journey. And one would be at or around the time of diagnosis and just to make sure that whatever the care plan is that was developed between you and your primary oncologist is something that's also similar to what a subspecialty kind of an expert would recommend. And I get a lot of those kinds of consults where I might just see the patient one time and they may not come back at all. Or maybe they just come back a couple of years later when something has changed. And the objective really is reassurance and to make sure there's not some sort of mistake being made or going down a path that's maybe not as likely to be beneficial. 

But just having that peace of mind that somebody else who knows a lot about this, would do the same thing and I can get the treatment close to home and I don't have to be three hours away driving back and forth every day to get the same treatment that I could take in my living room or five miles down the road.  

Laura DeRose: 

One of the things I started doing and actually it was a doctor in Hawaii that told me. He said, write down everything, every question you have, make two copies. One for him, one for me. What he does not know he would get the answer for it. And he did. He was true to form in that. He then began getting me my answers, expecting my little pieces of paper every time I'd come in. And I think you have to write down to start with what do you need? What is your concern? So, you can put it into more finite questions. 

Not just that you're scared of these labs, but what do these labs mean? Are they indicative of going into AML? Are they indicative of the worst progression? Those are the things that I think people need to look at and to find those answers, they need to tap into the best people around the world wherever they live. Then get back out there and do some research. And the Facebook support group is very good because we have a list of physicians around the world who are the specialists.

It's just, you're trying to save your life so you can't be worried about the little tiny details of getting there. You just have to try to find a way to get there. And there are so many people that have gone ahead of us. We need to use that information. 

Dr. LeBlanc: 

I know many patients and families worry that they're going to upset their doctor. And it may well be somebody that they really like and think very highly of and they're concerned about upsetting that person. So, it's important to recognize that we get these kinds of requests all the time. And I would say the vast majority of hematologists and oncologists are not going to take it personally.  

There are times when I've heard from community oncologists that patients go to a big tertiary academic center and it's like a black hole and they disappear, and they never come back and that they feel like specialists are stealing their patients sometimes. And I know certainly I don't want to be doing that to anybody. Really, my objective and I would say probably most of us feel this way, is to make sure that the patient and family feel comfortable and that they're getting the best care that they can receive and that everyone feels they're all on the same page about what we're doing together. So, I always make it really clear to the community oncologists who send patients to us that I'm happy for patients to go back to where they come from and where they live.

And I want them to be home and to receive all of their care or as much of their care as they can safely receive at home and close to home. And most of the time we can do that. But sometimes you need to go to the big place to get the clinical trial or maybe if you're talking about a stem cell transplant, certainly that's something where you will generally have to go to a tertiary referral center for a little while. But to make sure that there's a clear expectation of what you're hoping to get out of it and how the communication lines will be kept open between the referring doctor and the patient and the specialist so that it really does become one, hopefully highly functioning collaborative and cooperative team.

A lot of times the expert physicians who are seeing and treating patients with these rare diseases are also the ones who are directing and writing the research studies, the clinical trials and they know sort of what might be coming soon and they're using new techniques that might not really be standard of care yet. And yet, which we are starting to actually use to take care of people.

So if you look at what's happened in the last just five to 10 years in blood cancer care, we have just had this remarkable revolution in our ability to do incredibly sophisticated sensitive testing that doesn't take all that long to come back, which was literally impossible in the '90s and probably even 10 years ago. So, we do next generation sequencing testing and we look at individual point mutations and then all of a sudden, drugs get developed that actually target those mutations.

And if a person has one of those and there's a clinical trial open, that could literally be a life changing opportunity and in the community setting where those kinds of tests are not going to be widely available and they might be really expensive and have to be sent off to another lab, they usually don't get done at first until it really becomes a standard of care recommended in the guidelines at which point, it might've been being done at the academic centers for five years already.

You talked about the quality of life aspects of this disease and the difficulty of feeling well with myelofibrosis. And this is a problem that we have in various cancers, but particularly in a lot of blood cancers and many hematologists, oncologists and even some of the specialty ones at big academic centers under-recognize the value of additional supportive care kinds of services to help people feel well, no matter what's sort of going on and expected with their illness, their treatment, their prognosis. And so, I always mention that anybody dealing with a cancer diagnosis should seek out a palliative care specialist who's board certified who could help them with really aggressive symptom management alongside their cancer treatment. And there's unfortunately a lot of misconceptions and people think that palliative care is just about end of life issues and death and dying.

But actually, increasingly it's a medical specialty that focuses on helping people live well when they're facing something difficult. And we know that many of these new targeted therapies have a lot of side effects associated with them. And sometimes the hematologist oncologist is just not able to manage those as aggressively as a specialist could, who's really specialized with additional knowledge in areas of supportive care and symptom management. So, I always encourage people to seek that out as another person on their care team to help them feel as well and be as well as they could be.

Laura DeRose: 

I wanted to be looked at as more than a rare disease. I wanted them to see more than the lab results. Because sometimes the labs don't tell the whole story. They don't tell the past; they don't tell the future. I guess it's just I need somebody who's going to be on board and help me through this - whatever bumps in the road we had.  

Laura has been on a low dose of Jakafi since June 2017, living life to the fullest…and still researching. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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