MPN Patient Q&A: How Did You Avoid Obstacles to Receiving the Best Myeloproliferative Neoplasm Care

MPN Patient Q&A: How Did You Avoid Obstacles to Receiving the Best Myeloproliferative Neoplasm Care from Patient Empowerment Network on Vimeo.

 In 1991, there were few myeloproliferative neoplasm (MPN) experts. Many MF, ET, and PV patients were misdiagnosed and often received dismissive care. MPN patient Nona Baker shares how her diagnosis with two MPNs – essential thrombocythemia (ET) and polycythemia vera (PV) changed her life.

This program provides one patient’s perspective. Please talk to your own doctor to make healthcare decisions that are right for you. 

See More from Best MPN Care No Matter Where You Live

Related Resources:

How Do I Best Communicate My Concerns Without Feeling Dismissed


Transcript:

Dr. Nicole Rochester:

Hello and welcome. I’m Dr. Nicole Rochester, I’m a physician, a health advocate, the CEO of your GPS Doc, and the host for today’s Patient Empowerment Network program. I’d like to start by thanking our partners, MPN Alliance Australia and MPN Voice for their support. Today we’ll be doing an MPN patient question and answer session, talking directly to a patient living with an MPN for over 30 years. The goal is to help learn how to avoid obstacles to the best MPN care. Following this program, you will receive a survey and we’d be delighted to get your feedback, this helps inform future programs that we produce, please remember that this program is not a substitute for seeking medical care, so please be sure to connect with your healthcare team on what the best options may be for your medical care. I am proud and honored to introduce Nona Baker. Nona was diagnosed in 1991 with essential thrombocythemia, also known as ET, and then in 2004 with polycythemia vera also known as PV. Nona is a staunch patient advocate and the co-chair of MPN Voice where she counsels MPN patients around the world on how to connect to the best care. We are so happy that you have tuned in to learn about Nona’s journey and tips that she has for you and your family as you face an MPN diagnosis as well as how to navigate your care and gain clarity on your path to empowerment. Thanks for joining us, Nona.

Nona Baker:

Thank you and thank you to Patient Empowerment Network for giving me this opportunity to share my experience and hope for other patients as they navigate their way through the MPN diagnosis and treatments.

Dr. Nicole Rochester:

Wonderful, so Nona in 1991, when you were first diagnosed, there were very few experts in MPN. Many MF, ET, and PV patients were misdiagnosed, and they often received dismissive care, because there were just so many unknowns at the time, and sadly, this was part of your journey and we’re going to learn a little bit more about that shortly. We received a number of questions about how you navigate treatment early in the course of your diagnosis, your initial diagnosis was actually more of an assumption, and I’d love for you to briefly speak more about that.

Nona Baker:

Thank you. It was a fairly scary time, I have to admit because so little was known about MPNs or MPDs in those days, myeloproliferative disorders, blood disorders, and my journey was very much a checkered journey, starting with being sent to an orthopedic surgeon, who I then had to go into physiotherapy for painful feet and insoles in my shoes. I was sent to a rheumatologist who took one look at my blood work and that’s when he said, I think you’ve got an alcohol problem. My husband actually was sitting beside me and he said to him, he said, I think you’ve got that wrong, she doesn’t really drink. And the doctor then turned around, they said, Well, maybe the machines have got it wrong, so that was quite a scary thing, it was…I knew there was something wrong, but I’d been what we call here around the hoses, and it wasn’t until I…the rheumatologist asked for a new set of blood work that he called me two days later that I’ve made an appointment for you to see a hematologist and his call was on a Saturday morning on Monday, two days later, and then I can tell you I was really scared.

Nona Baker:

Really, really scared. The other thing it did is I kind of didn’t trust what I was being told, the one thing I was told was there were only 12,000 known patients in the country, I’m not sure that gave me a great deal of confidence, but yeah, it wasn’t an easy start it was very scary.

Dr. Nicole Rochester:

Wow, I appreciate you sharing that, and I’m sure that many people with MPNs and other rare diagnoses can relate to that journey. Well, let’s take a look at your brief vignette that sheds a little more light on your unconventional path to care…let’s watch.

Wow, well, the good news is Nona, we have come a long way, but of course, we still have a ways to go. Would you agree with that?

Nona Baker:

I couldn’t agree with that more. I hear so many patients through my work with caring forums that we do from London, that go out around the world who go and don’t get the right information and get quite scared still by what’s going on, and I think things like we’re doing now today help empower people to know that they can actually claim ownership of their MPN and ask for and have a right… Well, certainly in this country to ask for a second opinion and get to the right care to meet their needs.

Dr. Nicole Rochester:

Absolutely, and you are speaking my language as a health advocate, I am always talking with people about the importance of using their voice, standing up for themselves and seeking information, and asking questions, so I love that you have opened our program with that. So with that, let’s go ahead and get our questions, the first question comes from Susan, and Susan asks, “After the initial shock of your diagnosis, were you worried about limited treatment options and specialists, and then what was your next step?”

Nona Baker:

Was I worried? Well, I was just generally anxious because it’s this thing of not being in control of one’s body and having to surrender that control to another person, so that’s the scary bit for me, and then I did something a little bit stupid in hindsight because it was the early days of the internet, man, I did Dr. Google, not a good plan, because particularly in the very early days, there was some really, really sort of dreadful prognosis is almost sort of go from right, you will…which, of course, here I am, 30 years on. And so, I think that I would be very cautious even now in using Dr. Google, I would go to safe sites where they are medically monitored because I think a little knowledge can be very dangerous.

Dr. Nicole Rochester:

That is so true. And I just want to highlight that because in medicine, we often kind of jokingly talk about Dr. Google, but it really is a phenomenon, and while there’s this balance of patients with rare diseases being able to find information and empower themselves, but then as you mentioned, known a lot of the information on the internet has not been vetted, some of it is not scientifically accurate, and it can literally have you pulling your hair out as you read these accounts and start to really create more worry as opposed to creating action stuff. So, I appreciate you sharing that.

Our next question is from Alice and Alice says, “I’ve noticed among women, minority groups and underserved communities, that there’s often a dismissive tone or atmosphere when you speak up and share your concerns,” and she wants to know, “Nona, do you feel that being a woman played a role in your initial diagnosis?” And she also like to understand how to communicate concerns with the care team when you feel that you’re being dismissed.

Nona Baker:

That’s an interesting question, I have to be honest and say I didn’t experience that, but I’m well aware of that. And it goes on, and it’s really disempowering to feel that, so I have huge empathy to hear that. I think if I had experienced it, which I obviously didn’t experience it, my key tip here would be when going for an appointment with a clinician, take a notebook and a pen and write down what you want to ask them, and write down their answers, and preferably if you can take somebody with you, because then you have that opportunity afterwards to digest what you’ve been told, and that in itself is empowering because you can then make further choices.

Dr. Nicole Rochester:

I love that, Nona. Also, advice that I always give to clients, and you’re right, having someone with you and writing things down is so important, especially in these situations where you’re getting a diagnosis, there’s a lot of uncertainty. We know that a lot of the information that’s shared in medical appointments goes in one ear and out of the other, particularly if we’re anxious or concerned or worried, so having that second person in the room is so incredibly important. I appreciate that advice. All right, our next question comes from Charles. He says, some patients living with two MPNs have said that they’re living with two cancers,” and he goes on to say that he’s been confused as to whether MPNs are cancers or blood disorders. Do you feel comfortable speaking to that and setting the record straight based on how you counsel other advocates in this space, he also mentions that his wife is living with ET and PV as well, and that sometimes the language can be very confusing.

Nona Baker:

I absolutely agree. And interestingly, we did a virtual forum for…at the weekend and one of the research projects, there has been only impacting on families, and it’s very interesting that the language can be very…again, disempowering the word cancer, I think the conventional word cancer is almost…it’s a deaf nail, but actually, when I challenged on the medication, I had the word cancer was used, I went to my primary GP physician, and I asked him,” nobody’s told me I’ve got cancer. What’s this?” Because at the time, it was a blood disorder and it said cancer, and he said,” Do you know what cancer means, Nona?” He said, “It means a proliferation of cells, but these are confined to the bone marrow.” But what happened for us as patients, as we started off, or certainly I did with a blood disorder, and then the World Health Organization, because of this perforation of cells re-classified that as a neoplasm, a neoplasm is just another word for cancer. So, it hasn’t changed since I was diagnosed, but the words have changed. And the scariest is in the word neoplasm suddenly here in the UK, it’s been an advantage, because we have access to much better drugs than we would have had if we’ve just been a disorder. I can’t speak for other health authorities or other countries, because each country is different, but I think it’s just simplifying it.  Simplifying the language. That’s empowering in itself.

Dr. Nicole Rochester:

I agree, and language is everything, and I think the key is what you said, that while there is a proliferation and while some may use the word cancer that it is confined, and I think that that provides a lot of clarity. Alright, we also have a question from Julie. Julie says, “I was given the run-around early on in my journey and wasted valuable time,” and she wants to know, what are some questions or actions to take at the outset when ruling out MPNs?”

Nona Baker:

That’s a difficult question because I think everybody is different and every health service is different. I think if you’re in an area where the clinicians don’t necessarily know too much about MPNs, that can be problematic. We’re a small country here and we have access to some really good hospitals that specialize in MPNs. I think, again, it’s going back with your piece of paper saying, can we rule out that I’ve got an MPN and I’ve read about MPNs, I have the symptoms, whether it’s fatigue or whether it’s itch for PV or whatever the symptoms are, and I’ve seen that that can be a symptom of an MPN. And again, take a piece of paper, and say can we rule that out? You know, I think that’s empowering.

Dr. Nicole Rochester:

I agree. Nona and I think when counseling patients who have had misdiagnosis or long road to accurate diagnoses, what you just said is key, and a lot of times it’s a matter of opening up the minds of your physicians and your healthcare team, and like you said, if they’re not familiar with MPNs, then they may go down a path of giving you a different diagnosis, but if you’ve done a little research or if you have some concerns, just saying, could it be this…I know that you think I have this condition, but based on what I’ve read, based on what I’ve learned, could it be an MPN? And a lot of times just that suggestion is enough to kind of shift the conversation, so I think that’s wonderful advice. Alright, our next question comes from Edna. And Edna says that in your in yet you stated that you were diagnosed at 41 and that you are a busy mom and that you were working, and she wants to know, “How did you share this diagnosis with your children and how did it impact your work in your career?”

Nona Baker:

It’s a very interesting question, and I think my children, because I had sort of my mom’s painful feet and I have packets of mushy peas that used to be put on my feet because they were painful because of the obviously thick blood, and my younger son has done a lot of fundraising for MPN Voice, and he talked about how as an 8-year-old, he’d grown up with me having these symptoms that I haven’t done much about, and I know I’ve always taken the view for me, and this is only for me, that I don’t let my MPN define who I am. You know, I think it’s part of my life. It isn’t my life, because my fear would be after that initial anxiety and fear that if I allowed it to take over my life, it would actually really impact my younger…my young children…in terms of my work, I only work part-time. You know, the other thing is, yes, I got a lot of fatigue, but I think what I’ve learned over the years is to put your hands up and say, you know, I’ve hit a wall whereas I just take five minutes.

Nona Baker:

Just take that time. Whereas sometimes it’s difficult when you’re a mom with young children, and I think now, people tend to explain it a bit to their young children, when mom’s tired, it’s not because it’s anything you’ve done it, because I remember patients describing it to have children is…it’s like a car, when the oil in the car gets too thick, the car slows down and sometimes the car needs to stop, and she equated her blood as the oil in the car that sometimes it just slows down and then has to stop gets a bit of refueling, I thought that was a good definition for young children.

Dr. Nicole Rochester:

I love that, I love that, and I’m a pediatrician by training, so I love putting things in clear terms for kids, and I think that’s really important to just make it simple for them. I also really like what you said, Nona about the self-care part, I think that can be really difficult sometimes for even women who may not have chronic diseases, but certainly for women and moms who have chronic diseases and feeling that, feeling guilty when they take time for themselves, even if it’s in the context of their illness, and so needing to rest and explaining that and normalizing that mom needs to take a nap, I think is incredible, and I love that your son is involved in the advocacy work that you do for MPN. All right, we have a question from James. James says, “Are there specific lifestyle changes that you may, following your diagnosis that brought relief to any symptoms that you were having?”

Nona Baker:

Well, the first change I had to make was I used to smoke, and then my hematologist said to me that affects the red cell count, and that was the incentive to absolutely give up smoking there, and then that was my first lifestyle change, and I haven’t regretted it for a single day. Other lifestyle changes, not really, other than just becoming aware that you know to fight fatigue doesn’t help, sometimes you have to surrender to it, but definitely give up smoking and I… you know, I think that…well, nowadays people don’t smoke, but we’re talking 30 years ago, so…yeah, 30 years is pretty well since I’ve had a cigarette…

Dr. Nicole Rochester:

Well, kudos to you for giving up smoking that…that is a challenge. So that’s wonderful. All right, we have a question from Janet. Janet says, I have noticed that many MPN patients develop a second MPN over time, and she wants to know. She wants to know, “Were you surprised about your PV diagnosis over a decade after your first diagnosis, or is this something that you were perhaps prepared for by your medical team?”

Nona Baker:

Well, my second diagnosis came by chance because I had a problem with fibroids, which necessitated having a hysterectomy, which so, the natural venesection was taken away, and then it evolved to a… I don’t know whether that’s the reason, but then I was diagnosed with PV, which means that I have PV with high platelets now is I think the way in my hematologist describes it, but it’s certainly under control with the medication and with venesection from time to time. So, was I surprised? I don’t think after my journey, I don’t think anything surprised me really, I sort of…I think, again, I took ownership of it and just got on with it, really.

Dr. Nicole Rochester:

Excellent, thank you, Nona. As we prepare to close, is there one tip or one piece of advice that you would like to give to individuals with MPN?

Nona Baker:

Don’t be afraid to ask a question, because I think living with a fear of something is really not good for one’s general health because fear and anxiety can, I think, impact a physical illness if you’re living with a lot of fear in a lot of anxiety, and I know this is easy for me to say because I’ve had a relatively easy journey, and I’ve met patients who’ve had a really, really tough time and I know through Pan-voice, people that were diagnosed either shortly after me or some before who had a bone marrow transplant, you know, their life is obviously better, but my goodness…what they went through to get where they are now. But I think the whole thing that we’ve been talking about really is just find that voice, and even if it’s not with the clinician, share it with a friend, you don’t sit on fear, share it with a friend, have a body, have an ally, and one of the things we do at MPN Voice, which actually I think has helped enormously, is we have a buddy program there where you would be…you will be matched with somebody who has been diagnosed for at least two years that can buddy you along emotionally, because I don’t underestimate the emotional impact that that affects a lot of us.

Nona Baker:

And I think we need to have that voice to say, yes, it is a bit of a shock, but I’m not going to let it define me and wreck my life. If you can do that, I think life will be easier.

Dr. Nicole Rochester:

That is awesome. Don’t sit on fear. I’m going to carry that with me. Nona, I appreciate that. Well, that’s all the time that we have for questions. Nona, I want to thank you for taking this time to share your story with me and for everyone watching, and just to recap, we’ve learned that avoiding obstacles to the best MPN care means remembering that everyone’s journey is going to be different. We learned the importance of not allowing your disease to consume your life, and we’ve also learned the importance of using your voice because we are truly our own best advocates, it’s these actions that are key to staying on your path to empowerment. Thank you so much again for joining us, Nona, this has been amazing.

Nona Baker:

Thank you for giving me the time to speak to the patient community.

Dr. Nicole Rochester:

I’m Dr. Nicole Rochester, thank you again for joining this Patient Empowerment Network program. 

MPN Patient Q&A: How Did You Cope With a Second MPN Diagnosis?

MPN Patient Q&A: How Did You Cope with a Second MPN Diagnosis? from Patient Empowerment Network on Vimeo.

For myeloproliferative neoplasm (MPN) patients diagnosed with a second MPN, how can they cope or react to the diagnosis? Watch as MPN patient Nona shares her experience with her second MPN diagnosis as part of her patient journey.

This program provides one patient’s perspective. Please talk to your own doctor to make healthcare decisions that are right for you. 

See More from Best MPN Care No Matter Where You Live

Related Resources:

How Do I Best Communicate My Concerns Without Feeling Dismissed

 


Transcript:

Dr. Nicole Rochester:

All right, we have a question from Janet. Janet says, “I have noticed that many MPN patients develop a second MPN over time,” and she wants to know, “were you surprised about your PV diagnosis over a decade after your first diagnosis, or is this something that you were perhaps prepared for by your medical team?”

Nona Baker:

Well, my second diagnosis came by chance because I had a problem with fibroids, which necessitated having a hysterectomy, which saw the natural venesection was taken away, and then it evolved to a…. I don’t know whether that’s the reason, but then I was diagnosed with PV, which means that I have PV with high platelets now is I think the way in my human toll describes it. But it’s certainly under control with the medication and with venesection from time to time. So, was I surprised? I don’t think after my journey, I don’t think anything surprised me really, I sort of…I think, again, I took ownership of it and just got on with it, really.  

MPN Patient Q&A: What Lifestyle Changes Did You Make?

MPN Patient Q&A: What Lifestyle Changes Did You Make? from Patient Empowerment Network on Vimeo.

Should myeloproliferative neoplasm (MPN) patients make lifestyle changes after diagnosis? Watch as MPN patient Nona explains lifestyle changes she made following diagnosis to improve her quality of life.  

This program provides one patient’s perspective. Please talk to your own doctor to make healthcare decisions that are right for you. 

See More from Best MPN Care No Matter Where You Live

Related Resources:

How Do I Best Communicate My Concerns Without Feeling Dismissed

Key Considerations When Making Prostate Cancer Treatment Decisions


Transcript:

Dr. Nicole Rochester:

All right, we have a question from James. James says, “Are there specific lifestyle changes that you may, following your diagnosis that brought relief to any symptoms that you were having?”

Nona Baker:

Well, the first change I had to me was I used to smoke, and then my hematologist said to me that affects the red cell count, and that was the incentive to absolutely give up smoking there, and then that was my first lifestyle change, and I haven’t regretted it for a single day. Other lifestyle changes, not really, other than just becoming aware that you know to fight fatigue doesn’t help, sometimes you have to surrender to it, but definitely give up smoking and I… you know, I think that…well, nowadays people don’t smoke, but we’re talking 30 years ago, so…yeah, study is pretty well since I have a cigarette.  

MPN Patient Q&A: How Did Your MPN Diagnosis Impact Your Life?

MPN Patient Q&A: How Did Your MPN Diagnosis Impact Your Life? from Patient Empowerment Network on Vimeo.

For a myeloproliferative neoplasm (MPN) patient, how can diagnosis impact your life? Watch as MPN patient Nona shares her experience as a working mom, and Dr. Nicole Rochester shares her perspective about self-care. 

This program provides one patient’s perspective. Please talk to your own doctor to make healthcare decisions that are right for you. 

See More from Best MPN Care No Matter Where You Live

Related Resources:


Transcript:

Dr. Nicole Rochester:

All right, our next question comes from Edna. And Edna says that in your…you stated that you were diagnosed at 41 and that you are a busy mom and that you were working, and she wants to know, “How did you share this diagnosis with your children, and how did it impact your work in your career?”

Nona Baker:

It’s a very interesting question, and I think my children, because I had sort of my mom’s painful feet, and I have packets of mushy peas that used to be put on my feet because they were painful because of the obviously thick blood, and my younger son has done a lot of fundraising for MPN Voice. And he talked about how as an 8-year-old, he’d grown up with me having these symptoms that I haven’t done much about, and I know I’ve always taken the view for me, and this is only for me, that I don’t let my MPN define who I am. You know, I think it’s part of my life. It isn’t my life, because my fear would be after that initial anxiety and fear that if I allowed it to take over my life, it would actually really impact my younger…my young children…in terms of my work, I only work part-time. You know, the other thing is, yes, I got a lot of fatigue, but I think what I’ve learned over the years is to put your hands up and say, “You know, I’ve hit a wall,” whereas I just take five minutes.

Nona Baker:

Just take that time. Whereas sometimes it’s difficult when you’re a mom with young children, and I think now, people tend to explain it a bit to their young children, when mom’s tired, it’s not because it’s anything you’ve done it, because I remember patients describing it to have children is…it’s like a car when the oil in the car gets too thick, the car slows down and sometimes the car needs to stop, and she equated her blood as the oil in the car that sometimes it just slows down and then has to stop gets a bit of refueling, I thought that was a good definition for young children.

Dr. Nicole Rochester:

I love that, I love that, and I’m a pediatrician by training, so I love putting things in clear terms for kids, and I think that’s really important to just make it simple for them. I also really like what you said, Nona about the self-care part, I think that can be really difficult sometimes for even women who may not have chronic diseases, but certainly for women and moms who have chronic diseases and feeling that feeling guilty when they take time for themselves, even if it’s in the context of their illness. And so, needing to rest and explaining that and normalizing that mom needs to take a nap, I think is incredible, and I love that your son is involved in the advocacy work that you do for MPNs.  

MPN Patient Q&A: What Questions Should I Ask If I Suspect I Have an MPN?

MPN Patient Q&A: What Questions Should I Ask If I Suspect I Have an MPN? from Patient Empowerment Network on Vimeo.

For patients who suspect they have a myeloproliferative neoplasm (MPN), what questions should they ask? Watch as MPN patient Nona shares her advice for approaching questions with your doctor, and Dr. Nicole Rochester explains how to empower yourself to shift doctor-patient communication.

This program provides one patient’s perspective. Please talk to your own doctor to make healthcare decisions that are right for you. 

See More from Best MPN Care No Matter Where You Live

Related Resources:

How Do I Best Communicate My Concerns Without Feeling Dismissed

 

Key Considerations When Making Prostate Cancer Treatment Decisions


Transcript:

 Dr. Nicole Rochester:

All right, we also have a question from Julie. Julie says, “I was given the run-around early on in my journey and wasted valuable time.” And she wants to know, “What are some questions or actions to take at the outset when ruling out MPNs?”

Nona Baker:

That’s a difficult question, because I think everybody is different and every health service is different. I think if you’re in an area where the clinicians don’t necessarily know too much about MPNs, that can be problematic. We’re a small country here, and we have access to some really good hospitals that specialize in MPNs. I think, again, it’s going back with your piece of paper saying, “Can we rule out that I’ve got an MPN and I’ve read about MPNs, I have the symptoms,” whether it’s fatigue or whether it’s itch for PV or whatever the symptoms are, “and I’ve seen that that can be a symptom of an MPN.” And again, take a piece of paper, and say, “Can we rule that out?” You know, I think that’s empowering.

Dr. Nicole Rochester:

I agree. Nona and I think when counseling patients who have had misdiagnosis or a long road to accurate diagnoses, what you just said is key. And a lot of times it’s a matter of opening up the minds of your physicians and your healthcare team, and like you said, if they’re not familiar with MPNs, then they may go down a path of giving you a different diagnosis. But if you’ve done a little research or if you have some concerns, just saying, “Could it be this…I know that you think I have this condition, but based on what I’ve read, based on what I’ve learned, could it be an MPN?” And a lot of times just that suggestion is enough to kind of shift the conversation, so I think that’s wonderful advice.

MPN Patient Q&A: How Do I Best Communicate My Concerns Without Feeling Dismissed?

MPN Patient Q&A: How Do I Best Communicate My Concerns Without Feeling Dismissed? from Patient Empowerment Network on Vimeo.

What can myeloproliferative neoplasm (MPN) patients do to improve communication when the feel like their concerns aren’t being heard? Watch as MPN patient Nona shares her advice for preparing for appointments, and health advocate Dr. Nicole Rochester offers advice on how to help calm anxiety at appointments.

This program provides one patient’s perspective. Please talk to your own doctor to make healthcare decisions that are right for you. 

See More from Best MPN Care No Matter Where You Live

Related Resources:

 


Transcript:

Dr. Nicole Rochester:

Our next question is from Alice and Alice says, “I’ve noticed among women, minority groups and underserved communities, that there’s often a dismissive tone or atmosphere when you speak up and share your concerns,” and she wants to know, “Nona, do you feel that being a woman played a role in your initial diagnosis?” And she also likes to understand how to communicate concerns with the care team when you feel that you’re being dismissed.

Nona Baker:

That’s an interesting question, I have to be honest and say I didn’t experience that, but I’m well aware of that. And it goes on, and it’s really disempowering to feel that, so I have huge empathy to hear that. I think if I had experienced it, which I obviously didn’t experience it, my key tip here would be when going for an appointment with a clinician, take a notebook and a pen and write down what you want to ask them and write down their answers. And preferably if you can take somebody with you, because then you have that opportunity afterwards to digest what you’ve been told, and that in itself is empowering because you can then make further choices.

Dr. Nicole Rochester:

I love that, Nona. Also, advice that I always give to clients, and you’re right, having someone with you and writing things down is so important, especially in these situations where you’re getting a diagnosis, there’s a lot of uncertainty. We know that a lot of the information that’s shared in medical appointments goes in one ear and out of the other, particularly if we’re anxious or concerned or worried, so having that second person in the room is so incredibly important. I appreciate that advice.  

MPN Patient Q&A: How Did You Cope With the Initial Shock of an MPN Diagnosis?

MPN Patient Q&A: How Did You Cope With the Initial Shock of an MPN Diagnosis? from Patient Empowerment Network on Vimeo.

 A myeloproliferative neoplasm (MPN) diagnosis can come as a shock to many. Watch as MPN patient Nona shares her feelings and reaction following her diagnosis, and health advocate Dr. Nicole Rochester explains about finding reliable MPN information.

This program provides one patient’s perspective. Please talk to your own doctor to make healthcare decisions that are right for you. 

See More from Best MPN Care No Matter Where You Live

Related Resources:

How Do I Best Communicate My Concerns Without Feeling Dismissed

 


Transcript:

Dr. Nicole Rochester:

I am always talking with people about the importance of using their voice, standing up for themselves and seeking information, and asking questions. So, with that, let’s go ahead and get to our questions, the first question comes from Susan, and Susan asks, “After the initial shock of your diagnosis, were you worried about limited treatment options and specialists, and then what was your next step?”

Nona Baker:

Was I worried? Well, I was just generally anxious, because it’s this thing of not being in control of one’s body and having to surrender that control to another person. So that’s the scary bit for me, and then I did something a little bit stupid in hindsight because it was the early days of the Internet, man, I did Dr. Google, not a good plan, because particularly in the very early days, there was some really, really sort of dreadful prognosis is almost sort of go from right, you will…which, of course, here I am, 30 years on. And so, I think that I would be very cautious even now in using Dr. Google, I would go to safe sites where they are medically monitored, because I think a little knowledge can be very dangerous.

Dr. Nicole Rochester:

That is so true. And I just want to highlight that because in medicine, we often kind of jokingly talk about Dr. Google, but it really is a phenomenon. And while there’s this balance of patients with rare diseases being able to find information and empower themselves, but then as you mentioned, known a lot of the information on the Internet has not been vetted, some of it is not scientifically accurate, and it can literally have you pulling your hair out as you read these accounts and start to really create more worry as opposed to creating action stuff. So, I appreciate you sharing that.  

Counteracting MPN Fatigue and Finding Adequate Rest

Counteracting MPN Fatigue and Finding Adequate Rest from Patient Empowerment Network on Vimeo.

MPN Network Manager Summer Golden who lives with myelofibrosis, and her care partner Jeff, discuss how they handle her fatigue. From tracking sleep on smartwatches to choosing optimal dinner and travel times — they do not let fatigue boggle them down. Watch as Summer shares her personal experience with fatigue and provides tips to overcome. 

“We challenge you to find a way to make changes in your life that you get adequate rest. It’s really, really important.” 

 Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org

Take Care of Yourself and Your Family’s Health

Building Resilience and Boosting Immunity

At a time when health is top of mind for everyone, despite the stressors, how can we ensure to emerge emotionally, physically and mentally resilient? Patient Empowerment Network Care Partner Manager, Sherea Cary sits down with distinguished guests, Sara Goldberger and Dr. Shivdev Rao to discuss building resilience and boosting immunity. Both experts define resilience, provide tips for boosting heart-lung health and provide useful tools for cultivating resilience.

Defining Resilience

Defining Resilience from Patient Empowerment Network on Vimeo.

Tips for Boosting Heart and Lung Health

Tips for Boosting Heart and Lung Health from Patient Empowerment Network on Vimeo.

Community Resources & Tools for Cultivating Resilience

Community Resources and Tools for Cultivating Resilience from Patient Empowerment Network on Vimeo.

Oncology Social Worker Checklist

Resiliency Checklist During the Time of COVID-19


Sara Goldberger, MSSW, LCSW-R, has been an oncology social worker for 30 years. Currently she is the Senior Director, Program for the Cancer Support Community Headquarters. She has also worked in hospitals and community NFP settings. She is a member of several Advisory Boards is a frequent presenter and author. As AOSW strives to continue to advance excellence in psychosocial oncology, Sara hopes to play a part in efforts to educate, advocate, develop resources, expand on research initiatives, and create networking opportunities so that AOSW can improve the care of people impacted by a cancer diagnosis.

Turning Your Home Into a Sanctuary

In Five Simple Steps

These days, whether you’re spending more time there or you need a place to unwind after a long day, you need to feel like your home is your happy place. With the help of a few simple tips you can turn your home into your very own sanctuary.

1. Define your sanctuary

Think about where and when you feel the most comfortable and happy; then bring elements of that into your space. Whether you feel your best reading under a cozy blanket and low lighting, or painting in a sunlit room, consider your needs for the space. It doesn’t have to be complicated, says Professional Organizer Kristy Potgieter at KLP Organizing, LLC. Her philosophy is: simple is better.

2. Appeal to the senses

Sound, smell, and color can all evoke emotions. Play music that soothes you or makes you happy, use candles, oils, or incense to fill your space with your favorite scents, and paint your walls with neutral or calming colors. Even changing out your light bulbs can make a difference. Pink light bulbs give a warm, calm glow to your space.

3. Ditch the clutter

Clutter causes anxiety and stress so your best bet is to get rid of it. While clutter looks different to everyone, a good rule of thumb is to remove anything that doesn’t serve a purpose or make you happy. For the things you use on a regular basis, Potgieter recommends storing them in baskets and bins, which can be both decorative and functional. She also says keeping your kitchen counters clear is a simple way to make your home appear clutter-free.

4. Bring nature inside

You can place a vase of fresh-cut flowers on your table or bring in some house plants. If you don’t have a green thumb, a photo of the ocean, a wall painted green, a water fountain, some seashells, or a piece of wood are all okay ways to incorporate nature into your home. It can be as simple as opening a window and letting in the sunlight, which is a known mood booster.

5. Unplug from technology

You don’t have to ban technology altogether, but pick times, such as during meals and the hour before bed, to not use technology at all. Spend less time on social media platforms by deleting the apps on your phone and only using your computer to log onto those sites. You can also use the “do not disturb” settings on your devices to allow yourself some down time.

 

Whatever you do, remember Potgieter’s philosophy and keep it simple. Address the things that are most important to you and let the other stuff go. “The first thing I think of when making a home a sanctuary is really taking a look around and making sure all the things you see are things you love,” she says.

MPN Patient and Care Partner Share the Importance of Staying Positive and Setting Goals

MPN Patient and Care Partner Share the Importance of Staying Positive and Setting Goals from Patient Empowerment Network on Vimeo.

In the midst of a crisis, it’s quite difficult to set goals. With so much changing rapidly, how can we keep focus?

PEN MPN Network Managers Jeff and Summer share tips for tapping into resilience, keeping focus and setting goals. Both share their rituals for staying focused and having fun.

Want to connect with Jeff and Summer? Email them at question@powerfulpatients.org

Understanding Patient-Centered Care via Alliance for Patient Access

The Alliance for Patient Access created a video to help you understand patient-centered care.

Is Laughter Really the Best Medicine? One Woman’s Mission to Help Others with MPNs

Is Laughter Really the Best Medicine? One Woman’s Mission to Help Others with MPNs from Patient Empowerment Network on Vimeo.

Could laugher really be the best medicine? Patient advocate Summer Golden explains how she uses comedy to cope with her myelofibrosis (MF) diagnosis and shares her mission to inspire others.

Summer Golden and Jeff Bushnell have been married for over 20 years. When Summer was diagnosed with myelofibrosis (MF), Jeff took on the role of care partner and advocate. Summer uses her years of theatre training and comedy to cope with her condition and help others, while maintaining positivity about the future.

See More From the The Path to MPN Empowerment

Related Programs:

Can Diet and Exercise Reduce MPN Symptoms

Am I Meditating Correctly? Getting the Most Out of Mindfulness

Expert Tips for Managing MPN Related Anxiety


Transcript:

Summer:

When I was initially diagnosed after some other false starts with an MPN, I was kind of shocked because I’ve never really been sick, and I don’t take medications, but I didn’t think about it – that sounds crazy; I can’t explain it. I just figured I’d be okay, and the main thing – I didn’t wanna give up this theater.

You know how when you’re my age, people talk about nothing but their illness sometimes? I just never been into that, so it wasn’t part of my personality.

I started doing comedy two years ago because a friend of mine was taking a comedy class, and I went to her showcase, and I thought, “I should try that, even though I’ll never be funny, I have no jokes, and I don’t know what I would say.” But, I went, and I did comedy in clubs for a while, and then I didn’t – I don’t really like drinking and dirty jokes, so I kind of got away from it off and on, and then, when I got into doing it about my myelofibrosis, then I saw a purpose in it, so I went back to it.

I was thinking about whether my life was gonna be changed, how this was gonna change me, so I emailed my comedy teacher in the middle of the night, and I said, “Do comedians ever talk about cancer, having it?” And, he said, “Only if they have it.” So, I emailed him back and I said, “I’m coming back to your class,” so I did. He assigned everyone to be in a showcase. I was gonna do mine about cancer. It was six weeks, so I had to find humor. I don’t know how I find it. I just kind of see things.

I was shocked because I thought people were gonna hate it, and I was gonna quit, and then I’d invited my doctor and two friends, so I thought I’d better not just not show up. But, people came up and said they were inspired. I was just amazed because I mainly –I don’t go out of my way to think of – I do think of things that are funny, but it’s just – it’s a real thing. I try to keep my comedy real.

It’s helped me by being in control. I don’t pay much attention to the symptoms because I’m kind of over them.

Just helped me feel like I’m doing what I can do, and so far, it seems to be working, as long as I get enough sleep.

How do I think comedy could help other people who have health problems? I can tell you one way I thought to help somebody. I wanna start a class for people, but so far, there hasn’t been a lot of interest, but I think I could really help people doing that because I know how to write comedy.

If they really wanna do that, they would be a type of person that has humor, and they could do it, but you’ve gotta realize sometimes, people get a lot out of being sick. There are a lot of rewards, and so, they might prefer to have those rewards. For my way of thinking, if they wanna do humor, it’ll make a big difference, and if somebody wants to do it, they could call me, and I’ll help them.

Can Diet and Exercise Reduce MPN Symptoms?

Can Diet and Exercise Reduce MPN Symptoms? from Patient Empowerment Network on Vimeo

What can YOU do to make a positive impact on your overall MPN care? Researchers Dr. Jennifer Huberty and Ryan Eckert review the latest research on how movement and diet can benefit people living with myeloproliferative neoplasms (MPNs).

Dr. Jennifer Huberty is an Associate Professor at Arizona State University. She focuses her research on the use of complementary approaches to manage symptoms and improve quality of life for patients living with myeloproliferative neoplasms. More about Dr. Huberty here: chs.asu.edu/jennifer-huberty.

Ryan Eckert currently works at Mays Cancer Center, home to UT Health San Antonio MD Anderson Cancer Center. Ryan is the Research Coordinator for the MPN QoL Study Group and assists in research related to complementary health approaches in myeloproliferative neoplasms and other hematological disorders. More about Ryan here: mpnqol.com/research-team.

See More From the The Path to MPN Empowerment

Related Programs:

Am I Meditating Correctly? Getting the Most Out of Mindfulness

Expert Tips for Managing MPN-Related Anxiety

Improving Life with MPNs: The Latest Research and How to Get Involved


Transcript:

Ryan:

So, as far as the benefits of exercise for MPN patients, there’s many, and so, I guess starting with cancers as a whole, there’s a lot more research that’s been done in recent decades that looks at the effects of various forms of exercise and physical activity on other cancers. They just tend – researchers tend to do a lot more of that work in breast cancer, lung cancer, colon cancer, et cetera.

And so, the research in exercise for MPN patients is actually really new, and nobody outside of Dr. Huberty in conjunction with Dr. Mesa and a few other researchers have done any research related to exercise specifically in MPN patients. Our yoga studies that we’ve done have been the first venture down that route for MPN patients. But, what we do know in general is that exercise has obviously systemic effects across the whole body.

So, you’re gonna get health benefits just in general from exercise, but as far as for MPN patients specifically, some of the things that we’ve seen with our yoga studies, which is obviously a form of physical activity, is that we’ve seen sleep improve in MPN patients, so we’ve seen a reduction in sleep disturbances or disruptions in their sleep, a quicker time to fall asleep, and then, less waking up throughout the night – so, just better sleep in general.

We’ve seen some reductions in fatigue that have been reported by MPN patients who have gone through our yoga studies, and then, we’ve also seen a few other reductions in some other symptoms, such as anxiety and reduced depressive symptoms, a little bit of reduced pain is another one we’ve seen. So, just in general, we’ve seen some of those effects on MPN patients through some of our yoga studies.

Dr. Huberty:

So, in terms of adding to what Ryan just said, I would just say that exercise – maybe yoga or walking – is good for your body. It’s good for your health. It’s a recommendation that we get 150 minutes of moderate-intensity activity every week. The more that MPN patients can be achieving that goal towards 150 minutes – yoga counting at that – the better off they’re gonna be, and it doesn’t have to be going for a run.

It can simply be going for a walk around the block. It can be standing at your desk when you’re working instead of sitting all the time. That’s not necessarily activity per se, but it is moving your body and less sedentary. So, I think just focusing on the more that patients can move their body every day, the better off they’re gonna be.

Dr. Huberty:                

So, yeah, the role of diet in MPN patients – so, this is the beauty about the quality of life study group, because we have all these wonderful investigators that are part of the team, and we do have Dr. Robyn Scherber, who’s at Mays with Dr. Ruben Mesa. She’s doing some work with keto diet right now, so it’s very new, so I don’t know if you’re familiar with the keto diet, but it’s very high-fat and very low-carbohydrate, extremely low levels of carbohydrates. I wouldn’t tell any patient to go start doing those things unless they’ve talked to their physician for sure, but we do know that based on how you eat does certain things to your body.

So, MPNs have high inflammatory markers, and so, we wanna decrease inflammation; we probably wanna eat foods that are going to be anti-inflammatory. So, berries, let’s say, is a good example of fruits that are anti-inflammatory, almonds are anti-inflammatory, and I’m not a dietitian by any means, it’s just that things that I know to be true for my own diet because everybody should be thinking about having an anti-inflammatory diet.

Processed foods are not healthy. They are higher-inflammatory. Breakfast foods, eating out, and the foods that you get when you eat out a lot are going to be more inflammatory than not. So, just those small things – lots of vegetables. Vegetables are very good. Lots of greens. But, there is research going on – again, just like exercise and yoga, it’s in its infancy because MPN has been an under-studied population for years, and we’re trying to power through and make that difference.