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Living Well with Lung Cancer: Mind-Body Medicine

Mind-Body Medicine: How Can Cancer Patients Utilize Supportive Care Therapy Tools?

Recent studies support mind-body interventions, like yoga and mindfulness, as being responsible for helping to stabilize and manage symptoms and side effects of treatment. Preliminary studies show that mind-body medicine has the ability to lessen fatigue, anxiety, respiratory toxicities, sleep disturbance and emotional distress for not only patients, but care partners. Watch along as Certified Yoga Therapist Raquel Jex Forsgren and Dr. Ishwaria M. Subbiah explore mindfulness.

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Transcript:

Andrew Schorr:

And hello.  I’m Andrew Schorr with Patient Power.  And (? Inaudible).  We’re going to help you be more in control of your cancer journey, you as a patient or you as a care partner.  And I want to thank our sponsors for the program, Celgene Corporation, Genentech, Helsinn and Novartis for their financial support.

Now, you can send in questions if you haven’t already.  Send them to questions at patientpower.info, questions@patientpower.info, and we’ll take your questions later on with our experts.  Okay.

What are we discussing today?  Well, think about it.  If you have lung cancer or, like me, chronic lymphocytic leukemia‑‑I have another cancer too, 22 years I’ve been dealing with this, some of it‑‑myelofibrosis, a myeloproliferative condition, if you have multiple myeloma or pancreatic cancer, whatever it may be, you may get hit with heavy duty treatment, and that has side effects.  How do you cope with that?  And then you have all the issues that go with your diet, if you feel like eating, your mental health, your physical health.  Are you moving?  What are you doing?  The same for your care partner as well because they’re there along the way.

We’re going to be discussing all that, and we have some leading experts and I want to introduce them.  First of all, I want to start with my wife, Esther Schorr, who has been on this journey with me for 22 years.  Esther, welcome to the program and being my partner in life and on this.  Hi, Esther

Esther Schorr:

Oh, I can’t say that it’s been easy being your partner all these years, but it’s my pleasure to be here, and it’s been a pleasure to go along on this‑‑not a pleasure, but I’m happy to go along on this journey (? Inaudible).

Andrew Schorr:

Right.  In a minute we’re going to talk about some of our coping strategies, but I want to introduce you to our two other experts on this.  First of all, let’s go to Houston, Texas, to the MD Anderson Cancer Center where we’re joined again, because she’s been with us before, Dr. Ishwaria Subbiah, who is assistant professor of palliative, rehabilitation and integrative medicine.  Dr. Subbiah, welcome back.

Dr. Subbiah:

Thank you so much for having me.  It’s a pleasure to be here.

Andrew Schorr:

Okay.  We’ve got a lot to talk about.  And now let’s go up to Chicago where we’re joined by an expert in yoga, a certified yoga therapist, and that’s Raquel Forsgren who is an expert in yoga as it applies to cancer.  Raquel, welcome to the program.

Raquel Forsgren:

Thanks, Esther.  Thanks Andrew.

Andrew Schorr:

Okay.  Let’s go back to Esther for a minute, and we’re going to catch up with you two in just a minute.  So, Esther, a little about our story, when I was diagnosed with leukemia, when we were diagnosed, if you will, 22 years ago with chronic lymphocytic leukemia I didn’t say this to you, but I thought I’d be dead in short order.

Esther Schorr:

Well, I didn’t say it to you, but I was concerned the same way, Andrew.  It was very, very frightening.

Andrew Schorr:

So the diagnosis sends any of us reeling, and the care partner as well.  So let’s talk about that.  Esther, you had me getting distilled water for the house.

Esther Schorr:

Distilled water for the house‑‑

Andrew Schorr:

Wondering if we should move away.

Esther Schorr:

Yeah.  We wanted to move away from power lines and went to an energy therapist.  I think you even had hot stone therapy.  I can’t remember all of the things.  We were juicing at the time Andrew Weill had his‑‑

Andrew Schorr:

He had me stop drinking coffee because you saw a program with Dr. Weill from University of Arizona, an integrated medicine expert, and he said, well, maybe you shouldn’t drink coffee.  We lived in Seattle where there’s a Starbucks on every corner‑‑

Esther Schorr:

It was really hard.

Andrew Schorr:

And expanding, so.

Esther Schorr:

Yeah, but there were other things, Andrew, really more relevant.  I mean, those are the things that I think you and I thought, well, maybe we can get some control over what’s going on.  But really at the root of some of this is the things that really helped us, at least I can talk for myself.  I know you and I went into counseling to try to figure out how to cope together, and for me knowing that I had to be your care partner‑‑and we also had two small children at the time‑‑I’m a very anxious person by nature, and I found, and it may not be right for everybody, but I found that medication really helped me.

And that started about the time that‑‑it started at the time when you were diagnosed and to this day it’s really been helpful to me and I can’t wait to talk to Raquel because I now do yoga, and we’ll talk about that.  Yoga has helped me tremendously along the way.

Andrew Schorr:

And we did continue to exercise.  Esther and I have been joggers, if you will, and so we did that, and we continued that as I got chemo and other treatments.  Maybe we couldn’t run as far or I didn’t run as far or as fast, but we’re big believers in exercise to this day.  And it’s helped.  And the one other thing I would say is the religious component, we’re Jewish, so we would consult with our clergy and trying to get my head on straight related to our faith.  And if life would be shorter, how did we live our life, what would we say to our children or whoever would follow about what our life was.  So religious, psychological, exercise, medication support, right, Esther, related to anxiety.

Esther Schorr:

And leaning on community.  You know, I know for some people it’s hard to ask for help, but if you can find it in yourself to let go a little bit of your ego and pride.  I know for me and I think for you too, Andrew, just reaching out to our closest friends and family and saying, hey, we need some extra support.  Give us what you can, was really, really helpful.

Andrew Schorr:

Right.  All right.  Dr. Subbiah, let’s have some terms that we understand as we begin.  So, first of all, your palliative care, you’ve explained this to us in other programs, it’s not about necessarily you’re near death.  It’s about helping support you on your cancer journey.  Supportive care, what does that mean?  Mind‑body medicine, what does that mean?  So maybe you can define some of this for us today so we all have a common lexicon, if you will.

Dr. Subbiah:

Absolutely.  And so when you hear the terms “palliative care” most people, the first thing they think of is hospice care.  So something that, a service that’s engaged towards the end of life.  But the reality is that palliative care is symptom management.  It’s been taking care of that whole person and the people around them who matter to them as they go through the treatment for cancer.

So palliative care, we’re involved more and more, really from the time of diagnosis because most people feel the burden of this diagnosis, sometimes even before because you know that something is wrong leading up to the diagnosis for many people.  And so a bulk of my practice is taking care of a person as they go through cancer treatment.  So we refer to that as supportive care.  We’re supporting you through (? Inaudible).

So things that may come up, cancer pain, nausea, trouble breathing, depression, anxiety, distress, spiritual distress, spiritual pain.  So there are many elements that go with this diagnosis of cancer.  So our multidisciplinary team helps with managing that in the supportive care realm.

Palliative‑‑supportive care falls under palliative care, and so there is a component that is closer towards the end of life where the‑‑your body is going through the changes that are very natural.  And we want to make sure that the suffering that you’re afraid of or somebody who cares about you is afraid of, we can minimize that to a great extent.  The pain of that moment of life may not change, but the suffering that we associate with our passing from any reason doesn’t have to be there with the engagement of a palliative care physician.

Andrew Schorr:

Okay.  I want to get to mind‑body connection.  So this has been a debate in the medical profession for years, both for you and maybe your care partner.  So do we have like some control with the way we live our life or think about things that affect cancer?

Dr. Subbiah:

So mind‑body, there are many schools of thought on what it is, but if you put all the academic aside the meaning comes down to exactly what’s words are.  Your mind is very closely related to your body, and your body function is very closely related to your mind.

So what it means for us in the realm of cancer care either as a provider or as a patient is there is a component of everything that you’re feeling that can potentially be modified by mindful practices.  It may not change it altogether, it may not make it go away altogether, but there’s a component of symptom management that is beyond medications, that’s beyond a pill that involves practices that are what fall under the realm of mind‑body practice.  And so some of these are ones you’re heard of, acupuncture, massage therapy, guided imagery, music therapy and certainly yoga as well.

Andrew Schorr:

Yeah, and generally exercise.  Okay.  So you mentioned yoga.  So, first of all, there has been a study to show I think preliminarily that yoga, and I’m not sure if it was done at MD Anderson or where it was done, where there was a benefit they said for yoga, for yoga participation, both for the patient and especially the care partner, right?

Dr. Subbiah:

Absolutely.  And so that study was done at MD Anderson, and it was spearheaded by our department.  So what we wanted to show is that for a person who is going through chemotherapy and radiation for their lung cancer, that would a structured yoga intervention help them as well as their caregivers.  So what you’re looking at is an intersection where we not only acknowledge the distress of the person with the cancer and going through treatment but also of the person who is going with them on that journey.

And so this yoga intervention was structured to be given to both‑‑to be practiced by both the patient as well as their caregiver.  And so it was done for a 12‑week period with follow‑ups subsequently.  And we were able to show that there was a statistically significant and clinically meaningful difference improvement in the level of fatigue, in the level of activity in that person, which we measured by a six‑minute walk test.

So if the person was able to do a bit more physically as a consequence of participating in this program when compared to the control arm, which did not receive this structured yoga intervention.  And so there are implications on your functional standards, your mood, your energy level of adopting mind‑body practices.

Andrew Schorr:

And this was done for the caregivers as well, wasn’t it?

Dr. Subbiah:

Absolutely.  And so the caregivers also reported an improvement in their overall mood as a consequence of this.

Esther Schorr:

(? Inaudible) I’d just like to interject as a caregiver, a care partner, and I know that Raquel probably will mention this, but I know that there’s a whole range of things that fall into the category of yoga and mindfulness, and again people talk about that, but I know for sure that I have experienced the mind‑body connection in controlling anxiety.  The anxiety thoughts about what‑if in the future for you, what if for user family, that in the mindfulness and the breathing and the things that come with yoga, not just the positions that you do, and I know we’ll talk about that, but it’s more about centering your thinking more positively and turning inward and visualizing good instead of bad scenarios was tremendously helpful.  So (? Inaudible).

Andrew Schorr:

Okay.  All right.  So, Raquel, I’ve got some questions for you.  So you have a background related to yoga and cancer and sort of yoga tied in with cancer.  Tell us what that means and how you got involved in that because normally you wouldn’t think of that.

Raquel Forsgren:

Yeah, how it came to be.  Well, I started researching breast cancer on the bench about 28 years ago and into the pharmaceutical side, on the drug development with side as a pharmacologist, and obviously it worked with a multitude of different types of cancer, and it’s been my passion my whole entire adult life.  And I’ve also had several family members that have gone through the battle, some have won, some have lost, and so it’s very personal for me.

And then on the flip side with yoga therapy, just as Dr. Subbiah was talking, I like to see the entire person, the whole person be addressed.  And we need the oncologist to focus on the treatment and doing all they can to really fight at the disease level, but I think, as all three of you a have just mentioned, a yoga therapist comes in on the other side with what else can you do to help empower the person to actually take control over what they can.  Because there’s so much of a loss of control.  So I’m inspired by that.

And then I work with a lot of the other tools that we’ll talk about in a minute to just help that person control their mind, their breath, their thoughts, their rituals, all positive things that Esther was just talking about.  So that’s sort of my background and my interest in how it became to be working with cancer patients.

Andrew Schorr:

Okay.  So Esther is into yoga.  Esther, you started doing that what about four or five months ago, and now you do it two, three times a week.

Esther Schorr:

Right.  And actually I’m kind of sad I didn’t do it sooner.  But I will say I came into it because I was transitioning to much more let’s say aggressive exercise, running, some weight lifting.  But I found that the combination of yoga‑‑you know, a combination of yoga and the mindfulness and (? Inaudible) somewhat medication is really not hard on my body and really good for attitude.  So, yeah, I mean, I’m a big advocate.

Andrew Schorr:

Okay.  So, Raquel, so yoga might be foreign to people.  I mean, I knew‑‑I learned how to run and jog, but if you had asked me until Esther has been exposed to yoga I’d say that’s foreign.  So maybe you could ease us into it.  Maybe there’s some simple things you could show Esther or you two could demonstrate together that would be helpful for maybe the bulk of us who have never gone near any of this stuff but we do want to feel more in control.

Raquel Forsgren:

Yeah, I definitely will.  First of all, I will say that’s a myth.  There’s a lot of myths around yoga with not being able to do it because it’s too rigorous.  You mentioned Esther kind of coming from a rigorous running, jogging.  A lot of people think of yoga and they think of the postures that they see on social media or in magazines or TV or whatever, and they’re upside down where they’re doing different things, and that’s a beautiful aspect of yoga, but it’s only one.

There are so many different things we can do with yoga, the postures, the breathing, the imagery, as Dr. Subbiah talked about, and deep relaxation, which multiple studies have shown that can actually reset and rebalance someone’s nervous system.  So talk about mind‑body and being able to control that yourself.

So if you’d like to go you through a few techniques now we can do that.  What I would do is invite all of you who are viewing the program to do it with us and see if you can sense the difference in just a few minutes of doing some of these very simple practices, and then what you can do after this is recorded come back to this video and watch the practice again and just implement these, like Andrew said, a little bit on your own.

So what I’ll ask all of you to do, even those of you that are on‑‑joining us with Andrew‑‑and Dr. Subbiah, you can do it as well‑‑I’d like all of you to feel really comfortable, just to sit in your chair or if you’re watching this in your bed lying on your back, just wherever you are I want you to just simply close your eyes if you feel comfortable doing that.  And immediately feel the surface of whatever it is that’s supporting you, the chair, the bed, see if you can sink into it, even 5 percent more than you were initially.

Wherever your hands are, feel the bottoms of your hands, maybe the bottoms of your feet, your toes, your heels.  Just feel the body itself.  Now notice your breathing and don’t judge it, just notice what it’s doing, if it’s nice and slow and fluid as you inhale and exhale or shorter little breaths or sticky or clunky in any way.  Don’t analyze it.  Don’t go into any thinking other than just noticing.

Begin to expand your muscles in your ribs as you take your next inhale.  Just think about expanding your ribs out just a little bit more, taking two more nice, slow inhales and exhales.  And I want you to bring to mind one thing you’re really grateful for today.  One thing.  The next before we move on, bring to mind a goal, an intention.  It could be how you want to feel for the rest of the day, emotionally or physically.  How do you want to feel or what do you need?  Beautiful.

Softly begin to open your eyes and bring your hands right in front of your heart with your palms placed together.  We’re going to do just a few movements of our arms so that you can see what it’s like to connect movement, your body and mind and breath together, and also thinking about lung cancer just something that helps expand the lungs and just activate all of those muscles themselves that need to be nourished.

So as you inhale just open your arms like an (? cast) or goal post.  And you’ll need to adjust this.  If you have had surgery along the central plate, take it nice and easy, just open, inhaling.  As you exhale bring your arms together, touching your palms together, elbows and forearms.  Inhale, open the arms again.  Exhale, closing the arms together.  Just take two more only moving with your own breath.  And closing.  One more time just like that, beautifully opening and relaxing.  And releasing the palms back down on your hands.

Close your eyes one more time.  I want you to notice if anything has changed within your body, your mind or your emotions, and there’s nothing wrong if nothing’s shifted.  I just want you to notice.  And softly blink open your eyes again because I want to show you and have you go through with me one of the best anxiety reducing breathing techniques that can be done.  It’s published in the literature.

It’s called alternate nostril breathing.  You can do this while you’re waiting at the doctor’s office for results, if you starting to feel panicky or anxious, when you’re inside an MRI machine or a CT scan, when you are just waking up in the middle of the night with racing thoughts and you can’t seem to shut them off.  So you’ll take two fingers, sometimes it’s the outer fingers but sometimes with arthritis in older hands it’s a little tougher, so I like to use two fingers, you’re going to bring them up to your nose, and you’ll be closing off one nostril at a time.  And I want you to breathe normally and naturally, okay.  So this isn’t anything forced.

Close off the right nostril first, and just delicately push it.  You don’t have to push it clear into your nose.  Just delicately push it.  Exhale all the way out the left side of the nostril.  Then inhale through the left nostril, exhale out the right nostril.  Inhale through the right nostril, exhale out the right nostril.  We’re going to do three more of these.  Inhale through the left, exhale out the right.  Inhale through the right and exhale a little longer out the left.  One last time.  Inhale through the left and exhale longer out the right side.

Bring your hands back down to your lap and close your eyes again.  Take a nice normal, natural breath.  And I want you to notice what’s different in your breathing, if anything.  Just notice it.  Notice your heart beating.  Come back to that intention or that goal you set for yourself.  And softly blink open your eyes with a smile.  I’m expecting all of you watching to be smiling even though I can’t see you.  And Namaste.

That’s in a nutshell what I would say.  So that was about five minutes.  You tell me what you noticed.  How did you feel after doing it?

Andrew Schorr:

Well, as a patient I’m more relaxed.  I think I need a nap.  I’m worried about‑‑Dr. Subbiah has probably got (? Inaudible).

Dr. Subbiah:

Oh, I’m in a good place, so thank you.

Esther Schorr:

I can tell you that it steadied my breathing.  It’s deeper.  And my heart rate just calmed.  It just calmed.  I mean, it wasn’t super agitated before, but as we went through that exercise it’s just, I’m like even.  I’m like even.  That’s the only way I can explain it.

Raquel Forsgren:

Yes, that’s the most common description.  Thank you.

Andrew Schorr:

So, Raquel, a few questions.  Okay.  So let’s say we have 100 people here who are more relaxed, and they say, well, okay, I get it.  How can I be trained to do this again, either alone with others?  How does that happen?  So wherever people are, and they could be all over the world watching, how do they seek out resources to do this?

Raquel Forsgren:

Oh, it’s such a great question.  I would say across the country, particularly in cancer centers now, especially like MD Anderson and even the clinics.  It doesn’t have to be within the context of a big academic institutions, just ask.  Ask the nurse.  Ask your social worker.  I’m working with a lot of social workers now within the context of support (? Inaudible) support groups, so we’re mixing talk therapy with mind‑body.  So just ask your nurse navigator or any of them.  So that’s number one.

Number two, it is important to look for someone that is certified as a yoga therapist because we’re trained as a subspecialty in trauma, in serious disease, in cancer.  So that helps.  And you can go to the International Association of Yoga Therapy.  Go to their website and type in your zip code, and any number of certified therapists will come up with that information.  So those are two simple ways to find it.

Andrew Schorr:

Okay.  Dr. Subbiah, okay.  So‑‑and you all picked yoga as the modality you were testing as well.  So, first of all, what’s your take on what we just did, and what would you say to our folks as far as making use of that along with other approaches?

Dr. Subbiah:

So I went along with all of you and did this myself, and so everything regarding the heart rate, breathing, I’ve experienced it, and I noticed that my shoulders are much less tense.  So that’s always something that I notice when I do this in my office.

So yoga can be intimidating in that some people think that you need to set aside 40 minutes, an hour to do this.  The reality is you can gain benefits really in a very short period of time, and that’s one of the elements that we’re testing.  Is initially if an intervention, a yoga‑based intervention is a 45‑minute session, do we still have the same effect when we do a 30‑minute session, a 20‑minute session?  And we’re working on one now that’s an 11‑minute session.  So we want to see if the beneficial effects in people going through cancer treatment and their caregivers can be experienced by shorter and shorter time sessions.  And so we’ll put that data out once we get it.

Now, the two ways, the easiest ways to access it, are like what was said, which is engage your healthcare team and ask them about resources with integrated medicine within their practice, within their nearby hospital, within the city.  And so at MD Anderson we have a separate department of integrated medicine that’s devoted to the alternative and complementary aspects of care of someone with cancer.

And so the integrative center has classes every day in tai chi, Qigong, multiple‑‑every day that’s open to anybody, and so the patients, caregivers, whomever comes with them.  And so we would encourage our patients to take advantage of that, especially if you have an appointment in the morning and maybe an infusion in the afternoon and there’s some time in between the day is to go and spend that time in the integrative medicine center.

The other resource that I use is the integrative medicine center’s web page within MD Anderson.  And so you can access it from anywhere in the world.  Just Google integrative medicine at MD Anderson.  It will come up.  And there we have several videos there with our yoga expert here.  Dr. Alejandro Chaoul is one of the world leaders in yoga in the context of cancer therapy.  And so (? Ali) has several videos where he guides you through this.  So I’ve done this at home.  I’ve done this in the office.

And so you can open it up, do it on your smartphone and try it out.  And you can go back to it as many times as you want.  And don’t forgot to go back to it.  It’s not a one‑time.  The benefit comes from doing it repeatedly over the course of‑‑really it’s a lifestyle modification, so.

Andrew Schorr:

Esther, so you’ve made this part of your life now.  So I did feel a benefit just doing this.  And I did go to one class with you, so I’ve got to go again.  But as a caregiver, what do you see?  What change have you seen?

Esther Schorr:

Well, you know, other than what Raquel pointed out in that demonstration, for me, I’ve seen myself become physically stronger now, and I’m well aware that (? Inaudible) cancer patients some of the more advanced parts of yoga, the physicality of it may or may not be appropriate given what your mobility is and your physical being.

But if it is, whether it’s a caregiver or a patient, the really good thing about yoga that I found is it’s not a competitive sport.  It is a practice, and it’s very individual.  So you can do as much or as little as you want.  The mindfulness part, the breathing, what we just did, everybody can do.  And then you can build on that if for example you’ve gone through treatment and there are parts of your body that you have strength or you want to build strength yoga is very‑‑it builds on itself, so you can just build it at your own speed.

And so, for me, I found it’s not tough on my body like running was.  It accomplishes to lower anxiety, etc., and at the same time what I found is it strengthened my physical body and my ability to tolerate other stressors.

Andrew Schorr:

Right.  And as a patient I have definitely seen a change in Esther, which has helped me be calmer as well.

Esther Schorr:

Oh, I’m glad there’s that by product.  That’s great.

Andrew Schorr:

So Raquel, are there video you’re‑‑so great.  Are there videos that you’re in as well that we can link to that would be helpful?  I’d love to see again.

Raquel Forsgren:

I do.  Actually, I have a YouTube channel that has just a couple on there that I focused around, a long, deep relaxation, and this is one we didn’t talk about today much.  It’s about a 25‑ to 30‑minute deep relaxation, and it works through progressive muscle relaxation, body sensing, using the breath, and also really gets into the subtleties of the mind and what you’re starting to think about and process emotionally while you’re relaxed.  So that’s number one, and it’s on there.  It’s Yoga With Raquel.  That’s the name of it.

The other two that I have put on there were related to anger, grief, and dealing with difficult emotions and how do you welcome those and deal with them and process them.  And some of those I put on because of some people I was working with, was working with at the time, who were just diagnosed, and they had that swarm of emotions and they didn’t know what to think about what the oncologist had even told them.  They were angry.  They were sad.  It was just a mix.

So I created those just off of training I’ve had with Richard Miller and others to build those and put those out there for people.  And they’re free resources that anybody can tap into.  And they’re six and seven minutes long, but I would highly encourage anybody, especially I think for care partners, Esther like you and I have talked, you know, you’re wanting to be strong and be there for the person, for the loved one.  You don’t want them to see you falling apart inside or being afraid, and I think you need an outlet to feel what you’re feeling and then be able to go back and be present for the loved one.  And so that’s also been behind, in my mind, in creating a lot of these things now for that.  But, yeah, check those out for sure.

Esther Schorr:

Well, and yoga can be done together, too.

Raquel Forsgren:

Absolutely.  Absolutely.

Andrew Schorr:

So, Dr. Subbiah and Raquel and Esther and me, we’re getting questions, and if you have a question the best way to do it is to send it to questions@patientpower.info, and Tamara Lobban‑Jones, our wonderful producer, will help forward those to us.

Dr. Subbiah, I just saw a quick question that came in from Canada where someone asked, well, can yoga help with peripheral neuropathy pain?  So, for instance, our myeloma folks, some others, have medicines, and I think of those but there may be others across cancer, where you developed neuropathy in full or numbness, so what about that?  Or are there other ways to manage it, and that’s part of your discussion with your palliative care specialist?

Dr. Subbiah:

Absolutely.  Now, that’s a great question, and peripheral neuropathy, it can be anything from a nuisance to debilitating, and so it’s‑‑and it’s experienced by so many as a side effect of so many different cancer medications and so many of the other medical problems, like diabetes.  And so the impact on lifestyle can be tremendous.

And so we look at the pharmacological interventions that are out there that you may have worked with with your doctor, whether it’s the gabapentin or pregabalin or duloxetine.  These words may all ring a bell to some of you who are suffering from peripheral neuropathy.

The mind‑body realm just has some options for peripheral neuropathy, and these work in the same way that most mind‑body techniques work, which is in conjunction with (? Inaudible).  And so one of the interventions that we have data for to support its use in peripheral neuropathy, the primary one that comes to mind is acupuncture.

And so acupuncture, we have small trials that shows an improvement in the pain when compared to those who don’t receive acupuncture in their peripheral neuropathy.  So it does have a role when you use it for the management, and it may be that you use it in addition to a medication that you may have been taking that may have helped but not to the extent that you want it to.  So acupuncture has a tremendous role in the management of peripheral neuropathy.

The remainder of the techniques have a role in anxiety management, and even the distress that goes with having a peripheral neuropathy, so it’s not to say that there isn’t a role.  The whole concept of this is you have to take care of the whole person, so it’s not just about the pain in your left foot.  It’s the left foot that’s attached to that person who’s having to stop running because their left foot is bothering them.

So mind‑body techniques have a very important role, especially as you go later on in your treatment or as a survivor.  Some of these side effects stick around with you for a very long time.  So these mind‑body practices, you can take them with you for life.

Andrew Schorr:

We talked about anxiety, and Esther referred to that as a caregiver.  Previously and at other times we always talked about medication for that or depression as well.  What about some other things that come up?  I know when I went through chemo Esther had me taking ginger.  And I even had one of these little zappers like some pregnant women use for nausea, and that happened me, right?  But there were things like that.  And then I think I was an MD Anderson patient at the time, they even did have some other medicines, even suppositories I used because I couldn’t take anything by mouth.  I couldn’t keep it down.  And that helped me a lot.

So but that was in communication with my healthcare team.  So nausea, sleeplessness, anxiety, and even diet generally.  I know some people particularly with lung cancer have I think you’d call it cachexia or even myelofibrosis, which I have, where people just are like wasting away, right?  They’re not eating at all.

Dr. Subbiah:

Absolutely.  So this concept of cancer cachexia is very complex.  So from a medical standpoint it’s the loss of good muscle in your body and fat, and the reasons are not clear because you’re eating but you’re going through active treatment for cancer.  And what we attribute it to is the cancer itself, the chemicals, the cytokines that the cancer releases, the changes that it has on the body causing it to break down good muscle.

And so that has tremendous implications on body image.  If you don’t look the way you used to and you feel your appearance, your identity changing on a weekly basis, that can have a tremendous impact on your whole person well‑being.  And so at the moment there are really no effective treatments to stop cancer cachexia or even reverse it.  There are ways to potentially slow it down, and that may well mean meeting with the dietician to optimize the food that you take to make sure that you are getting enough calories, the right kind of calories.

Working with physical therapy on strength building, not necessarily to run a marathon but to have enough strength to go about your daily activities around the home, be able to walk and do things here.  These are ways to try to combat the physical changes that you feel.  So we brought up the anxiety as well.  So it’s‑‑mind‑body practices have a very important role in anxiety management.  And in fact I would say that the most robust data for mind‑body interventions, be it yoga, or massage therapy, meditation, guided imagery, is the management of mood and anxiety.

Andrew Schorr:

Right.  You talked about body image.  It’s all tied together in how you feel, how worried you are about the future, etc., so anything like Raquel was demonstrating to us is so important.

Here’s a question we got in from Pam.  I’m willing to bet she may be dealing with multiple myeloma, I’m not sure, but she says, what effect, if any, does high calcium levels have on the ability to exercise?  So anything‑‑I don’t know whether Raquel, you would comment or Dr. Subbiah, let’s start with you.  Calcium, you know, you have all these bone lesions and stuff like that, you can have this calcium problem but yet you want to do this stuff.  Any thought there, Dr. Subbiah?

Dr. Subbiah:

Sure.  And so hypercalcemia, it’s a very real medical entity, so you have to work very closely with your oncologist, with your physician, the provider team to make sure that the calcium is kept at a reasonably safe level.  What your body experiences as a result of hypercalcemia is real.  There is changes in energy pattern, changes in the strength, changes in your bowel function, changes in your mind and mood.  So hypercalcemia has real implications on really the whole body experience.

So it’s one of the electrolytes imbalances.  You know, you have‑‑I’m sure people listening to this have their potassium checked, their magnesium checked, the phosphorus checked among all other things at some point time during this journey.  Hypercalcemia is one where the person feels it a lot more than maybe another electrolyte that may be low or high.  So it’s very important to work with the provider team to get it down to a reasonable level, and know that some of what you’re feeling may be not necessarily the cancer per se or the treatment for the cancer.  It may be because of the electrolyte imbalances.

Andrew Schorr:

Wow.  Okay.  Raquel, go ahead.  You’re muted, so‑‑there you go.

Raquel Forsgren:

Yeah.  I think the one thing that I also would add to that too, Dr. Subbiah’s point about it affecting‑‑hypercalcemia affecting the whole body, the deep relaxation that I spoke about earlier, the way that that works specifically is around turning off that fight or flight mechanism in that part of our nervous system that kicks in when our body is in a state of trauma, which is kind of what’s happening in hypercalcemia from a just simplistic perspective.

And so when you’re in that deep relaxation state and leveraging the breathing, you’re reducing cortisol levels that are pumped out from your adrenal glands, and that entire cascade that happens in your body just starts to slow and relax.  And the neurotransmitters, the chemicals in the brain that are released, it’s just a cyclic event.

And so even though one might not be able to do any particular movements even, the breathing, the imagery and those deep relaxations shouldn’t be underestimated for the role they play in boosting the overall health of the inside off the body and all of the other mental components with it.  So I just wanted to add that little spin on what those do even if you feel like you can’t move out of your bed.

Andrew Schorr:

Well, thank you.  Here’s a question we got from Susan.  Susan wants to know, how can I protect myself from the effects of chemo outside of massage and meditation?  So chemo and even some of the non so‑called chemo drugs are very powerful and they have effects.  So, Dr. Subbiah, what about protecting yourself?  What can you do?

Dr. Subbiah:

So it’s‑‑there are added effects that one experiences.  That’s very different from therapy to therapy.  And so the interventions are, what you would do is dependent on the side effects of what you are taking at the moment.  So it starts with that discussion with your provider team.  What are the most common side effects, and what are some of the more rare side effects?  So it gives you a sense of what you’re most likely to experience and also to be on alert in case you happen to be that person who has a rare side effect as a consequence of the therapy.

Now, there are side effects from chemotherapy and targeted therapy and immunotherapy and cell therapy (? if anyone is on CAR‑T).  There’s only so much that can be done to protect yourself from this.  So the preventative aspects of the side effects is not there yet.  That is something that we work towards.  That’s something we hope to have so that the person doesn’t have the side effect to begin with.

So at the moment the way symptom management is is we have to‑‑we address the side effect after it happens.  And so the approach‑‑some of the most common side effects that are fatigue, nausea.  (? Inaudible) there are medications there.  You can talk to your medical provider about if there’s a role for a small, lower dose of steroids to help with fatigue.  If there’s a role for a lower dose of methylphenidate to help with fatigue, which is a stimulant.  So there are some data to support these in smaller trials.

There’s‑‑as with many medication interventions for fatigue management, the data is always mixed, and so there are some trials that think it’s important, others that don’t, and so at the end of the day my approach to it is if somebody’s having severe fatigue and they’re on a treatment that’s helping their cancer, treating their cancer, keeping it under control‑‑and we have a lot to gain from having the cancer under control‑‑let’s try a medication or two for the fatigue and see if it helps.  If it doesn’t help you, then stop it and move on.

But there’s so much variation from person to person, how you respond to a medication that’s there for supportive care and the side effects of the original cancer treatment.

Andrew Schorr:

Okay.  Raquel, here’s a question we got in from India.  I’m going to read that in a minute.  I just want to mention, if you have a question‑‑we have a few more minutes‑‑send them to questions@patientpower.info.  So this one is from India, and they didn’t give their name, but they said, how helpful is yoga for interstitial cystitis and with pelvic discomfort for a cancer patient?

So here’s somebody with that problem or I don’t know what the gynecologic cancer is, well, can yoga help at all just for the pain?

Raquel Forsgren:

Interstitial cystitis is a complex condition.

Andrew Schorr:

Amen.  It is.

Raquel Forsgren:

Even aside from the cancer component.  I see Dr. Subbiah smiling and nodding.  It would be kind of similar to the other mind‑body practices we talked about.  So the number one thing is relaxing the body.  It’s just relaxing the muscles.  Your pelvic floor and everything around it will tighten just as much as your shoulders or the other parts of your muscles, and the more you can relax them the better.

The more you can defocus away from that pain with guided imagery, that has also been known to help.  I don’t know specifically for interstitial cystitis, but I’m just talking about other types of internal pain, bone metastases, things that very‑‑you some things that are not on the outside of the body.  So I would say deep relaxation for sure.

Dr. Subbiah, for you, do you believe that pelvic floor postures could benefit someone in that way, or do you think that it could potentially aggravate the pain?  That could be kind of a follow‑on question because making posture is in really pulling the bellybutton in towards the spine and engaging that pelvic floor.  What do you think?

Dr. Subbiah:

So that’s along the lines of what I was thinking because you’re asking‑‑the person who asked the question is asking about a very specific condition, and so to my knowledge I’m not aware of any particular trials for mind‑body interventions for the purpose of interstitial cystitis.  And so then you start to think about, okay, what are‑‑what do we have data for where the symptoms may be similar and in a similar part of the body?  And so you immediately think of the gynecologic cancers where a person may have had surgery or radiation in that area of the body and causing over time that inflammation turns into a fibrosis.

And so I’m thinking of a woman who may have had a gynecologic cancer and having discomfort and pain, frankly, in that area and a pain that’s probably not going to go away because it’s a sequela, a consequence of the treatment.  And so in those contexts there is some support for mind‑body interventions.

The pelvic floor exercises are one that we do suggest, and so would it help with particularly interstitial cystitis?  I’m not quite sure simply because I can’t think of any data or a study where a person has asked that question.  And so my recommendation, as with all of these interventions, is to, number one, speak with the physician or provider who knows you the best, and have this discussion on, number one, do you think there is data, number two, do you think it will help, and number three, do you think it’s okay if I try it.

And then you take that information, you absorb it, as with all (? Inaudible), and then you make an informed judgment for yourself.  Okay, do I want to try this mind‑body practice?  I know that there isn’t a big randomized trial to show its benefit, but my doctor said it may not necessarily hurt me to try it, and so should I go ahead and make that attempt to see if this mind‑body practice will help me in any symptom that you could be feeling.

Andrew Schorr:

I want to ask about trying.  So we have women probably watching and some of them have had maybe lymph node surgery and maybe even dealing with lymphedema and may even wear (? sleeve) and things like that for breast cancer.  We have people who’ve had debilitating treatment for lung cancer.  We have people going through or have gone through transplant of various kinds, things like that.  So you see it, Dr. Subbiah, Raquel probably as well.

So you say, well, okay.  Do I‑‑how do I assess what I can do?  I can’t, you know I can’t‑‑maybe I can’t go to a class and Esther goes to classes and there are like 20 people in there and they do these different positions, and that’s a little a daunting to me, right?  So how do I celebrate what I can do and maybe increase that over time but at least I start.  So, Raquel, let’s start with you.  The whole idea of starting or trying even if it’s just like that, you know?

Raquel Forsgren:

Yeah, and I think that is one of the biggest things that stops people from trying, from thinking there’s something else they could do to help take control of what they’re going through.  It’s the daunting task of do I go to the yoga studio on the corner that I see people going in in these outfits and doing different things.  Like, I’m not that person.  And that’s the most important take‑home message I know I could give as I educate oncologists and nurses and people that are diagnosed with cancer to do is to do the research, do what Dr. Subbiah talked about, speak to the nurse, talk to the nurse navigator.

Look for classes within a hospital, number one.  Because they will be modified and tailored to people that are going through what you are.  And I know from a yoga therapist’s perspective I tailor yoga therapy sessions based upon the type of cancer, the stage of disease, even the types of treatment that the person’s going through.  I will tailor the entire practice around that with modifications.  And it changes.  It changes from at diagnosis maybe at second round of chemo to tenth round of chemo to post chemo, it all changes.

And so I would just be open, step through the fear, use this as a way to take control where you have the control.  You can’t control what the cancer’s doing, you can’t control the treatments the oncologist is giving you, but you can control your own lifestyle changes and your own quality of life.  And that’s what I love about yoga therapy is because it really does empower you because, as you all saw from just the small five minutes, you felt something.  You felt something shift, and that’s what will happen even if you do it for six minutes or 12 minutes.

And you do not have to be in a class at a studio.  You can do it within the context of even your own home.  And after you do some research you’ll find there’s a lot of online options.  You’re more than welcome to send questions in to Patient Power, and they can forward them to me.  I’m happy to try to help you find somebody in your local community that could even help you from a yoga perspective.  And I so I’m more than happy to help you as much as I can as well.

Andrew Schorr:

Wow.  You’re so devoted.  Thank you.

So, Dr. Subbiah, part of this is communication.  I think Raquel really explained about putting it in context and resources for people to start.  But there you are in your white coat.  All of us have doctors and be maybe we have multidisciplinary teams.  We have nurses and sometimes other kinds of therapists that we can draw on, but we’ve got to speak up, right?  So what would you say about whether it’s the patient themselves or the care partner, like Esther, to advocate so that we get these approaches brought to bear, whether we need training or medication in concert so that we get what we deserve?

Dr. Subbiah:

Sure.  So the field of complementary medicine, integrative medicine, it’s coming more and more to the forefront, but the reality is it’s always been on the periphery for really decades.  And so when you present a‑‑when you bring up an option of a particular mind‑body practice that you may want to try, the person listening to it on the other end, whether it’s your nurse, your nurse navigator, whether it’s your nurse practitioner, your physician or whomever it may be, they may not have been exposed to that in the course of their training and their years of experience.

And a person responds to that in different ways.  Sometimes if they don’t know about it they may dismiss it.  Other times they may be more supportive to say, okay, let’s look into it a little bit more.  But if they don’t have that background experience with it‑‑and that’s the way medicine has been for decades, so it’s not so much a fault of their own.  They just haven’t been exposed to it as much.

Then ask them is it okay if I pursue it a little more, do some more research and bring some information to you to help me interpret it.  And so I think we‑‑when we‑‑when you as the patient and the caregiver are gathering the information, just be aware that the person reading it may already be familiar with it or may not.  And then based on their level of comfort with it go forward in that discussion.

If they have recommendations that’s great.  If they don’t, we mentioned some of the resources where you can search online to find appropriately certified and trained personnel to deliver these mind‑body practices.  And so if you happen to be in a smaller area of the country or even in the larger area but don’t have immediate access to an integrative medicine center to at least get you started, then it’s a great way to‑‑it’s a great opportunity to do some of the leg work yourself and then work with your care team to find what’s right for you.

And you’re right.  The circumstances are that you may end up having‑‑when you end up doing your research you may actually know more than the persons in your (? Inaudible) just because of the way medicine has been but not where medicine is going, which is we’re all becoming much more cognizant.

Andrew Schorr:

Well said.  Esther, I want to get a final comment from you.  When I was diagnosed 22 years ago with chronic lymphocytic leukemia, we were in tears.  I felt like a victim, maybe you did too.  This came out of totally left field.  And I think our whole time with this has been what Raquel and Dr. Subbiah have been saying, trying to take back control.  And we’ve had providers along the way.  Some have been knowledgeable and some have not, but we’ve been trying to be advocates in doing what we can do, right?

Esther Schorr:

Right.  And what rings very true for me and our experience is Andrew shared and I guess I did too in a sense, some of these supplementary things that we researched and tried and it was always is this all right.  Let’s talk about this with his oncologists, his medical team.  And in one instance, I don’t know if you remember, Andrew, in one instance there we had read and done some research about accelerating the amount of a certain vitamin to help you when you were diagnosed with leukemia.

And we had the conversation with your oncologist at the time and he said, what vitamin supplement are you taking.  And when we told him, he said, I think you should probably not do that because in your particular case, in your particular kind of cancer there are studies that say that’s not a good idea.  So I bring that up in that this dialogue has always been really important for us, and I would think that that’s really what you both have been saying is research it, but before you dig in whole hog with some of these other complementary and supplementary things, have the dialogue with your medical team because some may be really helpful and some of it, there may be evidence that it’s not.  So, you know.

Andrew Schorr:

Well, you can see that Esther and I have been on a long journey together and just‑‑for those of you watching (? look), not always, but there are people living longer with lung cancer now.  There are people living longer with advanced prostate cancer, with advanced breast cancer.  We have a long way to go with a lot of the cancers, but we have are making progress with some of them, the blood cancers that I’ve been affected with.  Twenty‑two years ago I didn’t know I’d be there for the next month or the next year, and you’re stuck with me.  Here I am, and I hope Esther and I are going to be together for many, many years with our 33rd wedding anniversary coming up.

So then you say, well, how can I take control back from this where I started maybe feeling like a victim.  And that’s what we’re talking about here.  So this field that Dr. Subbiah talks about and now Raquel is very involved in on her end, these are relatively new and not having proliferated everywhere.  But you have the benefit here.  Take this into your life, we hope.  Have conversations with people like this or seek them out, seek the online resources.  All right.  I’m not going to preach anymore.  I just hope this program has been helpful.

I want to thank our guests.  Dr. Subbiah, thank you for being with us once again from MD Anderson and your work in integrative medicine.  Thank you so much.

Dr. Subbiah:

Absolutely.  Thank you so much for having me and this opportunity to talk with all of you.

Andrew Schorr:

Well, we’ll do it again.  And Raquel Forsgren joining us from Chicago and taking us through a guided program.  I’m going to look up those videos.  Thank you so much.

Raquel Forsgren:

Thank you.

Andrew Schorr:

Esther, here’s a big hug and kiss.  Thank you for being with us.

And one other thing is we’re going to have some resources for you that we’ll put with this program on the Patient Power website.  It will have links to all the things we’re talking about.  So be sure to look out for that.  We’ll be sending you e‑mails with alerts.  Tell others about this.  Have them sign up with Patient Power so they always are in the know as we do more programs.  And let and Esther and Tamara, our producer, know.  You can always send a comment to questions@patientpower.info.  Let us know if this was helpful.  Okay?

I want to thank the Patient Empowerment Network for this program and achieving wonderful support from Celgene and from Genentech and Helsinn and Novartis, and we really appreciate them being part of the cancer community, not just developing drugs but supporting our discussions like this one.  I’m in California.  We have our guests around the country and Esther upstairs where we live here.  I’m Andrew Schorr.  Remember, knowledge can be the best medicine of all.  Thanks for joining us.


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.

Living Well with MPNs – Strategies for Getting the Best Care

Managing Life with an MPN: Strategies for Getting the Best Care

In this “Living Well With MPNs” webinar, our expert panel featuring Dr. Laura Michaelis from the Medical College of Wisconsin, nurse Erin Blackwell from Levine Cancer Institute, as well as patient advocate Beth Probert, discussed managing life with a myeloproliferative neoplasm (MPN). The panel shared advice for finding a specialist, making informed decisions about treatment and monitoring progress of the disease through testing and check-ups. Tune-in now to hear tips for living well from the perspective of patients and healthcare providers.


Transcript:

Andrew:                                  

Hello and welcome to this program, “Managing Life with an MPN; Strategies for Getting the Best Care.” I’m Andrew Schorr in Carlsbad, California and living with an MPN, myelofibrosis. The Living Well series is a Patient Empowerment [Network] program produced by Patient Power, and we thank Incyte Corporation for their support for this series. We’ll be doing several programs during the year so be sure to be signed up with our alerts and you’ll always know as we continue.

We have some great people with us today around the country. I’m in Southern California, northern San Diego County. Now let’s go to Milwaukee, and I want to connect with our friend Dr. Laura Michaelis, who is at the Medical College of Wisconsin. Laura, thank you for being with us on Patient Power and our Patient Empowerment program today.

Dr. Michaelis:       

Absolutely, I’m pleased to be here. I wish our weather was as good as yours must be.

Andrew:     

Yeah, it is nice. And also I should mention Dr. Michaelis is dealing with a cold, so if she sounds a little stuffy, doctors get sick, too. But thank you for being with us. Now let’s skip down to Charlotte, North Carolina and the Levine Cancer Institute and that is Erin Blackwell. Erin works with Dr. Michael Grunwald who we know well there. Erin, thank you so much for being with us in Charlotte today.

Erin:   

Thank you for having me.

Andrew:                                  

Erin of course deals with Dr. Grunwald with leukemia patients and myeloproliferative condition patients all the time, and won an MPN Heroes Award this past year at the American Society of Hematology meeting for her dedication. Okay, let’s go back to California. Beth Probert is with us from Oxnard, California. Beth is a PV patient and she is just north of LA in Oxnard. Beth, thank you for joining us.

Beth:   

Thank you so much for inviting me to the panel.

Andrew:    

Beth, let’s talk about your story just for a minute. And that is you’ve been living with PV for what, about a year or so, now and you’re 55?

Beth:     

That’s right; just about a year.

Andrew:     

Okay, how did that diagnosis happen?

Beth:  

Well, it was a little crazy. It was during a very challenging time of my life.

I was dealing with my daughter’s mystery illness and sort of forgot about myself, and finally went to have a CBC with a new primary physician. Somehow, a gynecologist – I was visiting a day before I was to get the results from my physician – had those results, and he saw them and freaked out, and pretty much told me to get my affairs in order.

Andrew:        

That is scary for you. So who told you that you had this fairly rare condition, polycythemia vera; where did that come from?

Beth:                                         

Well, the gynecologist hinted at it and of course I fled his office and got my primary care physician on the phone. She called me down a little bit, told me to come in the next day and she suspected that it was that diagnoses but then arranged for me to meet with a specialist, which happened a few days later. So I had those few days of just pure panic.

Andrew:                                  

Now, you subsequently connected with Dr. Ilene Weitz at University of Southern California, the Norris Cancer Center in LA. That’s worked out for you.

Beth:                                         

It’s been fabulous. I went there; it was a fairly long drive and I was telling myself I’ll get a second opinion and a third opinion until I find the right doctor, and I was lucky to find the right doctor.

Andrew:

We’re going to come back to how you communicate with your doctor and a little bit about the treatment you receive and how it’s working. But the thing is, you’re doing well now with the right healthcare team. You’re at peace, I guess, with your diagnosis; you’re going on with your life.

Beth:                                         

That’s absolutely correct, Andrew.

Andrew:                                  

Okay, so Dr. Michaelis, that’s where we want to get everybody to is connect with the right team and doing well with modern medicine. So first of all, she mentioned about connecting with a specialist. You’re a specialist.

There are not that many doctors who see MPNs. Is seeing a specialist, at least having a consultation, knowing what you know about the field today, is that important? You’re muted, Laura. Hit the mute. There you go.

Dr. Michaelis:                      

Sorry about that. I would absolutely say yes, at some point early on seeing a specialist is important. One of the things is Beth’s story isn’t that unusual. The findings in a CBC of something that seems very off, whether or not it’s a very high platelet count, a very high hemoglobin or hematocrit can be pretty unusual for some doctors to see and know how to deal with. Sometimes they respond relatively drastically when that’s not necessary.

I think one of the best parts about a specialist is you’re seeing somebody who’s seen multiple patients with your presentation, with your symptoms, who knows when to be alarmed and when not to be alarmed. So Beth did exactly the right thing, which was make sure she then grounded herself with her primary care doctor, and I’ll say most of the patients that get referred to me are either referred to me by a primary care doctor, or sometimes by a specialist who might be a hematologist/oncologist.

But this is a rare condition even among people who see heme and oncology, so sometimes a hematologist/oncologist will want them to see me because I see this very routinely, and have seen patients at all edges of the spectrum.

Andrew:                                  

Of course then as we talk about MPN, so everybody’s straight on this and some people may be new to it; talking about ET, essential thrombocythemia, polycythemia vera, which is Beth’s situation; and myelofibrosis, which has been my diagnosis since 2011.

In this program, we’re not going to really get into treatments and genomics and all of that. We’re really going to talk about how do you live well and get the best care. And it’s not just your relationship with the doctor. So, Erin, let’s talk about that. You work hand in hand with Dr. Grunwald. You’re part of the leukemia doctors there and the doctors dealing with blood cancer. The nurse plays a key role, and that’s part of the dialogue, right? And you’re specialized.

Erin:

I think so. I think it’s a very different role than the provider, but we are healthcare providers also so we get to nurture the patients in a little bit different way. We’re not diagnosing but I think we’ve spoken about this before; patients usually have a very good relationship with their provider but they tend to open up to the nurse or the person that they get close to, which oftentimes will be in the office setting, the nurse.

So I think I’m able to glean information that the provider didn’t about symptoms that they’re having, that maybe they didn’t share with the provider; medication issues that didn’t come up.

So I think our relationship – and I’m the bridge, is sort of how I phrase it to patients. They can always go through me to get to the provider. If they’re not sure they need to contact the provider; I’m sort of the middle man.

Andrew:

Let’s start at the beginning. Beth, when you’re OB/GYN was freaking out if you will; did you see those blood test results and see how abnormal they were?

Beth:                                         

I absolutely did, and I was joking with you earlier that not only did I see some highs on there; I saw “critical” written next to several of those results. So that was extremely alarming.

Andrew:                                  

Dr. Michaelis, most of us with any of these conditions see Hs and Ls and critical that she saw; notations from the lab. What does that mean to you?

Because we start freaking out until we learn more.

Dr. Michaelis:                      

Of course it’s important to remember that when somebody comes up with what is normal, it’s done by having let’s say 1,000 people go to the hospital, have their blood drawn, and then a bell curve is written as this is what the normal hemoglobin is. What’s important is not so much if somebody is one or two points outside of the edges of that; it’s important; what it is relative to Beth. So for example, if Beth starts at a given level and then over time, her disease gets under control, she may still be slightly high or slightly low in some zones.

But relative to her, the disease is getting better. So we don’t really pay attention to the highs or lows very much; that’s against a huge, general population. What I’m really interested in is what do Beth’s labs look like compared to where they should be, or what it would mean if her disease was well controlled.

Andrew:                                  

So you deal with that, too, Erin, is people have a test and they’re alarmed. You often have to, as I say, bring people back down to earth, right?

Erin:                                           

Yes, and unfortunately when we print labs for patients, it actually will print out “high, low, critical” so patients do become frightened. We have a really neat tool on our computer system where we can graph counts over time. So I can show you from last year where you’ve started and where you’ve come to, so you can see the improvement, hopefully, and at times not improvement. That seems to calm nerves.

Andrew:                                  

That does it for me. So okay, Beth, you started seeing a specialist and then you had a certain rhythm of visits now that you’ve had over the last year. How often do you go see Dr. Weitz?

Beth:                                         

I see Dr. Weitz now about every six weeks. At the [00:20:00] onset it was every two weeks and four weeks. But because I am doing much better, it’s now six weeks.

Andrew:                                  

Right, and we should mention in your case, your one of the folks with PV who is on an interferon. The dose has been adjusted but it’s working well for you.

Beth:                                         

It’s working very well.

Andrew:                                  

Okay, so Dr. Michaelis, let’s talk about how you establish a treatment plan. So we come in, you confirm the diagnosis, we have some tests. So, how does that dialogue go about not specific treatments but how do you establish a plan?

Dr. Michaelis:                      

That’s something I’ve learned as I’ve matured as a doctor, and I feel it’s something I’m getting – I hope to get better at. I start everybody by talking about what is the cause or what do we think the causes of the disease are. I think it’s helpful for people to understand the way the disease develops, what are the underlying levers and changes in the bone marrow.

And then we talk about 1) have we truly confirmed the diagnosis? Do we have all the tests we need? Once we get through step one, which is confirming the diagnosis, we then go through something called risk stratification. Risk stratification means that we look at what does the disease look like, what are the characteristics of the disease. Are there high risk characteristics or low risk characteristics?

We then look at the patient’s own medical history; their age, their other health issues, their what we call comorbidities; the other things they may be struggling with. And the combination of those two help me determine what’s the likelihood of something bad happening because of the disease, or how the disease interacts with the patient. Once we have that risk stratification, then I like to talk about goals. What are this patient’s goals? Some people want to do everything they can to eradicate a disease.

Some people, their important values are their quality of life or being at home with their families. I try and listen to their values and what’s important to them, and then with that, we think about this is the risk the disease poses. These are the goals that you have; what is our panel of options out here? What kind of arrows do we have in our quiver, and how should we choose that treatment based on what we can accomplish, what you want to accomplish, and what we ought to accomplish.

That ‘s the kind of dialogue, and I find that that conversation, not the one where you’re first diagnosed, but that conversation of the first discussion of should we start treatment, that’s one of my longest conversations. So I prep patients; this might be a conversation where you want to bring family members. This might be an appointment we’re going to make as a double length because it’s going to be a little bit longer. Sometimes we’ll have patients bring their iPhone or something so they can have other family members conference in.

But that decision about starting treatment and which treatment to go for and why is an important one. And finally, we end it all by what should we see if it’s working. So how are we going to measure that this treatment is working for you? What are the types of things we’re going to see, and when? And when will we know when it’s not working?

So I like to lay it out with saying have we gotten the diagnosis, do we have appropriate risk stratification, have we identified your goals, and what kind of treatments are out there that could accomplish your goals.

Andrew:                                  

I was living in Charlotte for awhile so I went to Erin’s clinic and to see Erin and Dr. Grunwald. We would talk at each visit based on what Dr. Michaelis was just saying: how am I doing, how’s it going; bout a frequency visit. Sometimes I’ve had doctors say to me, when do you want to come back? Then I’d say doctor, when do you think?

Well, I think you should come back in three months. Sounds good to me, or should I come back sooner? Erin, you’ve been part of those conversations about frequency of visits. How do you as a team determine that with the patient?

Erin:                                           

I think it’s really; again as Dr. Michaelis was referring to, it’s a conversation had by the physician, the provider; what they’re comfortable with versus what the patient is comfortable with. At times, it’s that the patient would like to be seen more frequently than they really need to be for their comfort and their peace of mind. And the physicians usually are okay with that.

Then there are times when they want to go six months without follow up, and obviously with a lot of our patients, unless they’re just doing very, very well, that’s not feasible or responsible. So it’s always a conversation and I’m the one to make their follow up appointments and to give that to them when they’ll leave. So I’ll be the last line if they have an issue with it; they let me know.

Andrew:                                  

Beth, how often do you go? How often do you see Dr. Weitz?

Beth:                                         

Now I’m seeing Dr. Weitz every six weeks, and I really took to heart what Dr. Michaelis and Erin just spoke about because it’s the process I went through. What makes it very comfortable for me now to go every six weeks, I know whenever I have a question I can reach out to Dr. Weitz through the portal email. And it’s amazing; she gets right back to me. So it helps bridge that time going from two weeks, then to four weeks, and now it’s six weeks. I don’t feel alone. I don’t feel like it’s too long because I know I could reach out to her and her support team, as well.

Andrew:                                  

Okay, let’s talk about phone calls and emails. Dr. Michaelis, are patients able to call you? Do you communicate either directly via email sometimes or through the portal that maybe your institution has – many have it; I have it at UCSD here – about visits or connection, if you will, or questions with you or your team when you’re not physically there; when the patient is not physically there?

Dr. Michaelis:                      

Absolutely. One of the technologies that is possible now because of these electronic medical records allows what we call asynchronous communication. So you wake up in the morning and you’re much itchier than you’re used to, or you have a rash, you email me. You don’t have to reach me at that exact moment in time, but I will see it. My nurse sometimes screens it, and if it’s something she thinks is more urgent she’ll walk it over to my office or she’ll page me.

If it’s something that can wait, there’s a given period in the day when I take a look at the messages that have come in, that I’ve set aside and I’ll respond to them. Sometimes a patient wants to talk by phone, which is great. And that, I always ask them leave me a time that’s a good time to talk to you; best for me after 4, before 6. And that’s a time when I tend to be able to communicate with patients. I think one of the key elements is to remember, these are not for something urgent.

If you have chest pain, if you have severe shortness of breath, if your leg gets suddenly swollen; don’t expect these emails through the electronic medical record to be that timely because it’s often something that’s done as a routine part of the day but not urgently. Those should be done by a page, and everybody should have a way to page your doctor or their nurse through a triage system. Or, if it’s a real emergency, of course go to the ER or call 9-1-1.

One of the other things I do is I give my patients a stack of cards. Because if they’re being seen in an emergency room or somewhere, I want them to give my card to that doctor and ay: this is my hematologist, I have a rare blood condition; please page her. That’s because sometimes folks live far away from me, and so if they’re up in the upper peninsula of Michigan or skiing somewhere and they have an emergency; their bleeding risks, their clotting risks are unique.

I want people who aren’t familiar with this kind of blood condition to be able to call me any time and I can say this person has PV, they’re on a low dose of hydroxyurea; these are the things you need to watch out for. If the person needs to go to surgery emergently, this is what needs to happen afterwards. So I always have my patients carry a stack of cards to distribute. And I say don’t assume any physician knows about this condition; please have them contact me.

Andrew:   

That’s a very cool idea. I hadn’t thought about that and they hadn’t told me that at UC San Diego where I go. So, now we’re going into travel season, Erin. So people may go far afield. Esther and I are actually going on a business trip to Europe; hopefully everything will be just peachy fine. So talk to me about travel.

People have anxiety with illness when we travel, and if we have a wonderful relationship with you or Dr. Michaelis, or Beth has with Dr Weitz in Los Angeles, when we get away from that tether it can be a little anxiety-producing. What do you say to people about travel, particularly as we’re looking at the travel summer season?

Erin:                                           

It’s usually a conversation at the appointment. If our patients are going to go out of town for any reason, there’s a risk of interrupting treatment or they need labs while they’re away; that’s something we can help them set up. We have a patient currently that travels to Florida every other week and is on treatment. So we worked with an institute in Florida to sort of split care. So it’s a conversation that needs to be have. And I think fortunately, our patients have direct access to us almost 24/7.

We have an Access Center that takes calls 24/7, and during the day will reach a nurse; at night a physician covers. They always have my email address, my direct phone number at my desk. So, we try to make ourselves very reachable, so if something does come up –

But as Dr. Michaelis was saying, if anything urgent and life threatening comes up; call us later and go to the ER first, that sort of thing. We reiterate those messages.

Andrew:

I’m going to come back to you in a second, Beth. Well, Beth, let me ask you this while I’m thinking about it. From the patient point of view, like I don’t know what your travel plans are. You’re giving yourself interferon shots. Do you worry about travel at all because of PV? How do you plan your life? Because you have your doctor visits, you’re giving yourself shots. How do you plan your life, and do you worry about disrupting that plan at all?

Beth:

You know, on the onset I absolutely did. When everything is running your mind, and at the time I was traveling more. So my doctor actually talked to me about if I do need to take it with me, that the airlines, you know, what they require. And she urged me to check the airlines that I typically travel to get the instructions; does it need to be refrigerated, what are the security risks?

So, I sorted that out when I first went on the medication. I was doing a little traveling for business. And of course now that I’m on an every other week dose, it does make it quite easier. But I do urge PV patients to figure that out in advance, even if it’s just a slight – Maybe it might happen, maybe it might not but to be prepared in advance is something so important. So I did check that all out.

Andrew:

Laura, you were talking about eventualities that come up for patients and the communication among doctors. For instance, I have minor surgery that I’m trying to have happen. And so in my case as a myelofibrosis patient, I have lower platelets. And so I’ve got the surgeons talking to my hematologist/oncologist and they’re going to be prepared with platelets for the surgery so I can have the surgery; they feel it’s safe.

But they planned for it and they’re all talking, and that’s the kind of thing we need to ensure is happening, right?

Dr. Michaelis:

Oh my gosh, yes. I think communication between physicians is absolutely essential in this, especially when a procedure is elective. That means there’s time. Elective is a term we use when something can be done and planned in advance instead of emergently. We do know that when patients with PV, for example, go to surgery and their hemoglobin is very high, their risk of clots after the surgery or even problems within the surgery with the anesthesia can be higher.

So you want to make sure you’re going in – to the best of your ability, you’re going in with your blood counts well controlled and under optimal management. Same with platelet counts, which elevated platelet counts after surgery, can sometimes be a problem.

The other thing is that when your doctors communicate, it means that there’s a transfer of information, there’s a transfer of knowledge. And so that surgeon, when they go to see you and does his post-operation visit, it’s going to remind him: oh yeah, this patient has that rare condition; maybe I should call that doctor and just update them, for example.

So starting that communication early and that transfer o f knowledge is not only good for you, but makes sure that there’s a sort of routine – there’s a routine collaboration on a complicated patient.

Andrew:

So Erin, what do you tell your patients so that they get everybody working together? You try to do it within the hematology area, but somebody might have diabetes, somebody might have heart issues, somebody might have whatever surgery, procedures coming up. So how do you counsel people so that you know what this condition is, that we’re living with this hematologic condition is understood and proper communication happens?

Erin:

Similarly to Dr. Michaelis, Dr. Grunwald and Dr. Gerber both give out their cards to every patient that comes to the door. They hold onto it and they know if they see another provider and there are ever questions, that they can give them the card or give them their information. Something we don’t think about all the time when we’re treating these patients with either acute leukemia or myeloproliferative neoplasms in this case, they oftentimes have comorbidities or other things going on that we have to also address and make sure they’re staying – if they do have databases, we’re monitoring their A1C and their sugars are controlled.

And just because they have this diagnosis in myelofibrosis, that they’re not forgetting to take care of the other parts of their bodies. We need all parts to work, so I think it’s really important when I see patients – I look over their labs and their vital signs and make sure we’re addressing the things that sometimes we accidentally tuck away, like if a patient’s blood pressure has been continually high and we’re not addressing, or if their sugars have been high and we haven’t checked an A1C.

I think the best thing we can do is educate patients to know those sorts of things and to know what to look for so they can be advocates for themselves. But I think it’s also important that we all are mindful of the different parts of the patient because most of our patients are pretty complicated. There’s not just one thing going on.

Andrew:

Right. I have a question for you, Dr. Michaelis. So frequency visits, just to go back to that, if you want to see me more often does that mean things are not going well and I should start – my blood pressure should go up and – you know?

Dr. Michaelis:

Not always. Certainly if I get worried about a patient, my solution to that is to pay more attention. So sometimes if I’m worried that somebody’s disease is progressing, I will see them more frequently. But more often, when I see somebody more frequently it’s because we’ve had a turn in the road.

It might be a change from hydrea to interferon. We might have changed the dose of interferon a little bit. I might be worried about –. Maybe it’s the time of year, for example flu season. A lot of patients in the fall, we have a lot more hospitalizations with all leukemia patients and also some MPN patients. So sometimes it’s just that – I usually, like Beth’s experience and Erin’s experience, the frequency of visits is often a conversation. I’m not somebody who can go to long without seeing my patients. I want to keep them close so that I monitor them.

But if somebody is getting labs, they live in the upper peninsula of Michigan, they’re getting labs every six weeks and seeing me every 12; that’s fine and just keep up with that.

Andrew:

Right. I want to mention to our audience, so we have time for your questions so send them to MPN@PatientPower.info. We’ll get to the ones we can today, and we’ll be doing a whole series of these programs and so we’ll just keep making sure that we cover what’s important to you. I want to mention in my case as a myelofibrosis patient, that Dr. Jamieson down here in San Diego, she has me go to one of their clinics within the UCSD system and get monthly labs. And then if there’s something she’s concerned about, they let me know. But otherwise, I’m on a three- or four-month schedule, whatever it may be.

Okay, let’s move on to some other things. We talked about the treatment plan, Dr. Michaelis; you talked about that. One of the things that can come up in treatment planning now today is hopefully we have a situation that continues to involve in MPNs, is clinical trials.

So you’re a researcher as well as an in the clinic clinician. So where does that fit in in the discussion, in your opinion, related to what clinical trials are happening, what might be coming, what should we put on the table for our ongoing discussion?

Dr. Michaelis:

Great question. I think there’s this false idea that clinical trials are something that are used as a last resort, and it turns out that that’s really not the case, not in MPNs and not in other conditions as well. So, clinical trials are where there’s a hope to either improve or change the standard of care. When a patient is newly diagnosed, there is oftentimes opportunities to be in a trial that might be providing the standard of care with something else, or might be testing some new agent against the standard of care.

In myeloprolifative neoplasms are one of the most novel agents; there’s a medicine called ruxolitinib which is the brand name Jakafi, and that was only approved because people participated in clinical trials and found that it was effective at the goals that were set out in the treatment of high risk or intermediate to risk myelofibrosis.

So when I talk to patients about clinical trials, I frame it again in terms of the risk stratification, what are our goals, what can we reasonably hope to change, and when should we try and do that; and I put that in the panel of options. So option No. 1 might be standard of care, option No. 2 might be a wait/watching approach; let’s just observe for awhile.

Option No. 3 might be participating in a clinical trial. Clinical trials become more important, I think, when the standard of care options haven’t worked, So in a patient that may have progressed through several lines of therapy. so in a patient that may have progressed through several lines of therapy.

Then looking even farther afield for clinical trials, newer agents, agents that are brand-new out of the lab are often tested only in a handful of spots around the country. And for people with the desire and the wherewithal to look for those novel agents, again far afield; if that’s something logistically possible. And if it’s part of your value system to be involved in something very experimental where there’s no guarantee of success, then looking into clinical trials might be helpful.

Some people don’t want to be in an experimental situation, but some people find value in being part of the process to discover new drugs. And that’s something that’s an important thing to explore with your doctor.

Andrew:

I’m just going to make my pitch. I also have another blood-related condition, chronic lymphocytic leukemia. I was in a phase II trial for that.

I got the combination therapy ten years before it was approved by the FDA as a combination. So I think that helped with my longevity. I’m on ruxolitinib, the drug you mentioned. I was not in the trial but I got it early after it was approved, and I’m very grateful, very grateful. I met even who I think was patient No. 1, Mike down at MD Anderson, and I’m very grateful; I’ve given him a big hug, you know? And so I think it’s something to consider.

Your interferon is working for you, Beth, but there are other interferons in trials and other medicines in trials should you need it. What’s your take on trials? Because I know you’ve been going, looking at all our programs and learning about it. What’s your thought about it now?

Beth:

Let me preface this by saying when I was first diagnosed, I knew I had to remain open-minded. There’s no black or white; there’s a lot of grey.

So I gave myself the commitment that I would listen to everything that’s out there that’s pertinent to me. And somewhat what Dr. Michaelis had said a few moments ago is let me identify your value system. So taking all that information in, I would absolutely consider being part of a clinical trial if it was going to benefit me or have the opportunity. And I agree again with Dr. Michaelis that it probably would depend upon where am I at. It might be working well for me today, but maybe six months, a year, two years –

The other thing I realized right away is that in as much as we all do have very rare diseases we’re speaking about today, things change. The ongoing research, what might be happening today, six months from now might be very, very different.

So taking all of that into consideration, and I do have a very strong goal for patient advocacy and hoping that my journey through this medical challenge is meaningful and could provide hope and care for others in the future.

Having said all of that, I would definitely remain open and just take the situation as it comes along.

Andrew:

Right. What a great attitude. So Erin, that comes up in your discussion. You have Drs. Grunwald and Gerber who specialize in this. I would just make a comment, so your doctors there, Dr. Michaelis in Wisconsin, other doctors we’ve mentioned along the way; these are specialists in these conditions. If you think about companies that are sponsoring trials, they’re going to go to these doctors and say would you be interested in doing this trial. So if you want to particularly have access to trials in MPNs, you want to be connected with the specialists in our conditions, right, Erin?

Because you have research going on there, right?

Erin:

We do. We have several clinical trials open at the moment that are pertinent to this particular set of patients. We don’t have every trial that’s open, but they’re also familiar with what institutions do. So, if we have to make a referral outside because of patients interested in a trial that we don’t offer, and that’s something that we routinely do.

And I just want to point out; you mentioned travel and being prepared. Because of an experience that happened recently, make sure if you travel that you take your Jakafi with you if you happen to be on it, because suddenly stopping Jakafi is not a good thing, as we educate our patients.

Andrew:

And don’t put it in your checked luggage

Erin:

Right, right.

Andrew:

Keep it right with you. I keep it so close to my heart, Erin, I understand. Jakafi, I know, it’s not something you want to stop.

Erin:

Yes, especially suddenly. It should be tapered if it’s going to be stopped or else there are withdrawals.

Andrew:

No, I’m very careful about that. Okay. So Beth, you’re living with this diagnoses that you’ve had for a year or so. So, how have you gotten your head on straight about it to go on with your life?

Beth:

Well, I knew right away that if I looked at my diagnosis as somewhat of a gift, and I mean that by I was running around, I had so many other priorities, I had no clue that anything was really wrong with me. And I shudder to think what might have happened had I not gone for that CBC. You know, I really had a very serious medical condition at the time.

And so I took the attitude that I need to be gracious I was diagnosed, because looking at the alternative, it could have had terrible consequences. And I realized – you know, it took me a couple of months to get my feet back on the ground, so to speak, to just be calmer.

And I really had to start doing some things that people had always said. Oh, you have to have balance in your life. Or you should exercise more; you need to take time out for yourself, or you need to meditate. And I just realized that I need to really be more balanced, mind, body and soul if I was going to go through this medical journey.

So I started doing some different things that worked for me. I wasn’t so good sitting there meditating, but I learned to meditate and walk. I started embarking on yoga. I really embraced myself in a plant-based diet for various reasons. It was working well for my daughter for her autoimmune and I thought there was a lot of merit for helping me. And with that came learning how to cook again; with cooking came more peace and time to think.

I know that’s sort of a long-winded answer but I had to do things differently to be able to understand that I want to live life to the fullest. And if I’m running around always worried, freaking out about this new diagnosis and my medical challenge, I wasn’t going to make it. I really had to be balanced mind, body and soul.

Andrew:

Well said; I think that’s true. So Dr. Michaelis, you have people come in. Whether you make the diagnosis or confirm a diagnosis, they’ve come from somewhere else and they’re pretty alarmed. The family members are alarmed as well. Yet, all of us want to take back control. We feel out of control; this disease we have never heard of. How do you help people? How do you counsel them so they can go on with their lives?

Dr. Michaelis:

One of the things I do is tell people that I’m paid to worry; you’re not.

My job is the worrying job; your job is the living job and so let me do the worrying. You know, I’m used to worrying about these things; I know what to worry about and that’s my job. So my job isn’t cure; I try and heal but I’m not a curer. I try to heal the best I can. If something is curable, I’ll do that. But I am good at worrying. So, that’s what I tell people to leave in the office.

The second thing is that most people have gone through episodes of their lives before where they’ve felt out of control, and things get you through that. Either your family, or the people you love that are around you, sometimes exercise or meditation. Sometimes it’s venturing back into positive habits like good eating like Beth was talking about, or being outside in nature. Some people are grounded in faith. Something that makes you feel bigger than yourself; those same strategies are helpful when you face the grief of a diagnosis like this.

And it is a grief. You’re leaving behind a perception of your body that’s not true anymore because you’ve been diagnosed with some crazy disease that you’ve never heard of. So it is a process. I would say Beth, three months is a great time to be able to have gotten grounded again, and I think the strategies that you used in sort of learning from your daughter is incredibly positive.

But you’re right; this is a new chapter for people. Like, you thought you were traveling along in one country and then the road took a turn and you’re in a different country. So you just have to sort of say well, I want to drive safely but I also have to enjoy the landscape here. So, that just means you have to adjust.

Andrew:

I’m just going to make a comment as someone now living with myelofibrosis four and a half years. So, it was terrifying and my spleen is somewhat enlarged so it’s a reminder that it’s there.

I have my medicine right next to my toothbrush morning and night so I’m reminded then. But the rest of the time, I just go about my business. And I think, and Beth you can probably relate to this, and I’ve said this a number of time. In our lives we have people say can you go on a hike with us, or can you come over for dinner, or can you take ten minutes and let’s get coffee? And often the answer is no because you’re so busy.

I’ve routinely tried to make my answer yes. And Beth, I don’t know if you, too, maybe you could say stop and smell the roses but it’s take time out to enjoy.

Beth:

I could not agree with you more, Andrew. I realized that I was just going a mile a minute all the time, and putting things off and people off.

And you do, you really do reflect on who that inner circle is that you want around you, and making time for them and enjoying that time. So yes, I absolutely agree with what you just said.

Andrew:

Erin, I’m sure you’ve had patients who’ve seen Dr. Grunwald or Dr. Gerber maybe for the initial diagnosis. They’re really troubled. And then over time, how have you counseled people to help them really just go about their lives, enjoy their families, enjoy their work, travel, whatever is important to them?

Erin:

I think that’s the key is finding out what is important to them, and then you can really help them understand that although this is a diagnosis that affects how they live the rest of their lives, and in no way should we minimize that. But we also want them to be able to do what you do, where you take your medication and you go about your day the way that you would like to. I think a large part of the reason our patients don’t always do that is how they feel.

A lot of times they suffer from fatigue, either from anemia or secondarily or just from the disease itself.

It’s hard for them to feel up to doing those sorts of things so I think it’s really important to find to what kind of lifestyle they lead, how we could maybe improve upon that, and then involve any members of the interdisciplinary team that we need to. Sometimes patients need social support, sometimes they need – we have a social worker on campus that’s able to help patients especially with that first visit it they’re having trouble coping.

We have resources available that can help these patients. But I think the key to it is understanding what life looks like to them, what they enjoy about it, what’s important to them, and how we can get them back to doing those things.

Andrew:

Amen. So Dr. Michaelis, let’s talk about communication, not just the emails and the web portals and phone calls, but sort of transparency in communication, if you will. So, that’s on a number of levels. You mentioned fatigue, Erin, and fatigue, I’m fortunate I think I really haven’t been affected by it in any big way.

Beth, I’m not sure about you but there are things sometimes that we don’t confront, or don’t make positive adjustments to. How do you help people first of all communicate about what’s really going on? You mentioned a phone call about itching awhile ago. But whatever the symptom may be and where you all put your heads together to say how can we help you live well, deal with this, improve it if we can, and if we can, what adjustments can we make? Let’s talk about that open communication.

Beth:

Absolutely. One of the things is Erin is absolutely right; this cluster of diseases has a lot of symptoms. And it used to be that policies looked at the blood numbers and said ah, they’re not that bad; you’re fine.

It’s the work of Dr. Mesa who really brought this idea of symptom management and identifying and quantifying the symptoms that patients have, that has led us to be able to say the people with myelofibrosis and myeloproliferative neoplasms are more tired, they have more difficulty; we’ve heard about the itching and the bone pain. There’s also more difficulty sleeping, more chances to depressions, sometimes difficulty fulfilling work obligations. So, truly there are some symptoms.

Now, some of those get much better. They get better sometimes with medications, for example. They can get better if the anemia is well controlled. We do think that probably exercise is helpful, although there are still clinical trials going on with that. But your doctor is never going to know if you don’t tell them. And if the doctor doesn’t ask on a routine basis, and have you really used some metrics to quantify it?

So some of us use surveys. Every time a patient comes in, they might do a certain survey that says: in the last week, how often have you been in pain? For the last week, have you noticed depression? Or for the last month, have you found more difficulty sleeping?

Those kind of things, and we can compare just like you charted your CBC over time; you can also look at your symptoms over time and it’s something quantifiable. It also gives you a hard number to measure; is my treatment working? Look, you say you don’t feel differently but look what you were saying your pain was before, and look what it is over the last three visits. So that helps to really bring people back to the fact that while things aren’t perfect, maybe we’ve made some improvements.

But I absolutely think that not only keeping a diary of your symptoms at home, so if you just keep a little three-ring binder or something that says I notice that my migraines are happening at once a week versus twice a week as before; making sure you arrive at that doctor’s office with data in hand can be really helpful at grounding them back to the fact that this is a symptom-based disease, a lot. And if you don’t treat the symptoms, you’re missing a key part of helping that patient thrive.

Andrew:

Erin, you’re nodding your head. And I know when you walk into the Levine Cancer Institute, you give us a clipboard.

There’s stuff to answer, and they do that in San Diego. Maybe you have that, Beth, at USC in Los Angeles, as well. So that, really being honest, the patient, and maybe the family member saying – if they’re with you – hey, you really haven’t been sleeping well. You really have been avoiding taking a shower because you said you’re having itching. That’s important, right?

Erin:

Yes, sir. And it’s sort of funny. These are constitutional symptoms that the patients feel. We give them an assessment every time they come to see us; one on their initial consultation that’s slightly different, and then subsequent follow up they’ll fill one out that is the square of 100, based on their symptoms. The max score, if they had every symptom at its worst would be 100; and if they had no symptoms, it would be a zero.

So we are able to track the progress. But it always tickles me that a lot of times the caregiver will fill it out on the patient’s behalf. Sometimes we might get more accurate information that way because the patients don’t want to complain, per se.

So the caregiver knows they’ve complained to them, whereas they don’t want to complain to us so it is interesting to see.

Andrew:

Okay, let’s go on and take some questions. And if you have a question, send it to MPN@PatientPower.info. Laura, this one’s for you. This is from Sandra. Sandra writes in: 2012 through a number of blood tests, I was diagnosed with an unclassified MPN. I see a hematologist once per year for blood work. My chart currently says MPN disease stable, and I’ve never been on any medication. Is it possible to be unclassified or are my doctors just waiting for the disease to progress?

Dr. Michaelis:

There is definitely a condition called MPN-NOS. That tends to be something called – it often is an MDS/MPN overlap.

I will tell you the World Health Organization recently redid their numeric – the way they sub-classify these. So one thing you might want to ask the next time you see your physician is, is my disease still classified as MPN-NOS? Or does the new WHO diagnosis, the new WHO classification give me a more precise definition? I will tell you also that sometimes repeated bone marrow biopsies, or at least a second bone marrow biopsy might be necessary to see what’s happening at this time.

Diseases evolve over time, so if it’s been five years since your last bone marrow biopsy, and if somebody is considering treating you, then I would certainly get a repeat bone marrow biopsy to get an accurate picture of your diagnosis.

Andrew:

Okay, here’s another question probably for you as the provider, here. I believe the name is Maria; could be Maria but I think it’s Maria. Or, we’ll call her Mari.

Does a B2 vitamin supplement, 1 milligram tablet a day orally, do any harm for a patient with PV? And then she also asks about other supplements such as valerian root or melatonin.

Dr. Michaelis:

About the B vitamins, I don’t know that it would do any harm. We do tend to avoid too many vitamin supplements in the early phases of these diseases because these diseases are where the bone marrow is growing on its own. It’s kind of like it stopped listening to the body’s controlling signals and the stem cells, which are the interior parts of the bone marrow, are growing without control and that’s why people’s hemoglobin or platelets are high.

So you don’t want to feed that. I don’t think it’s dangerous to take the B2 vitamin, but I also don’t know what help it would have.

With regard to a supplement like valerian root, that’s not really – I don’t know anything about that. What we have here, for example, is a specialist – is somebody who deals with alternative – she’s a pharmacist. She knows a lot about alternative medicines. And what I ask people who are interested in taking a lot of supplements is to have an appointment with her and verify that nothing is going to get in the way of the therapies that I provide. Because I’m responsible for the toxicities of any therapy that I administer. And so what I really want to make sure is that no supplements are going to hurt in that way.

Melatonin is a relatively common supplement. It’s excellent for sleeplessness that happens to be about circadian rhythm so your light exposure. I think it’s especially helpful in the northern part of U.S. I’m here in Wisconsin, and I’ll tell you it’s hard to readjust your sleep when you’re going from a 14-hour night to a 4-hour night based on where you live. It can be helpful and I don’t think that there’s much danger that’s been reported to melatonin when used as directed.

Andrew:

Erin, I know you have a pharmacist – I’ve met him – there at the Levine Cancer Institute. So checking in with the pharmacist about prescription medicines and supplements; that’s not a bad idea, is it?

Erin:

We actually have four dedicated pharmacists to our clinic, but it’s not just us; it’s lymphoma, myeloma and leukemia clinic. But yes, we use them frequently. They’ll consult with patients and at routine visits, they’ll check in. they actually have the ability to make patients – they’re essentially really nice medication lists that tell them when to take their medications at the scheduled time. It’s a printout for them that helps them organize when to take their medications.

So the pharmacists are very involved, and if I ever have a question about a cold medication; will it interfere with the medication they’re on, or supplements, then I will start with the pharmacist and go from there.

Andrew:

Okay, let’s go on.

Here’s a question we got from Judy. Judy asks: I’m finding it difficult to coordinate care among my doctors. Do you have tips on accomplishing that? She say: not all of my doctors are interested in being part of these communications. So Dr. Michaelis, you passed out the cards but how do we make it happen when we, the patient, and maybe you helping us with a serious condition, know it’s really important?

Dr. Michaelis:

It’s hard to change other people’s behavior. I think you offer. I think another thing to do is when you go to your hematologist, ask if a copy of the note, the consultation note, can be also sent to you so you can keep at least copies of some of the written communication that’s happening.

You can’t fix bedside manner. You can find doctors who have good bedside manner, and don’t be afraid to shop around. Nobody gets offended; you’re not offending anybody.

If you find a doctor that doesn’t want to listen to the other people taking care of you, then that’s a concern. People should be collegial. You’re the only person in the room that matters so treat it like that.

Andrew:

Amen. Actually, we have an email from Charlyn that’s related to that. She has this question: What if your hem/onc doctor does not want to give you a referral, such as to a subspecialist like you? She’s saying we’re close enough to be seen by a specialist at Stanford, so in northern California, but need the referral to have it covered by our insurance. So the more general oncology maybe doesn’t want to let go, and you have to go based on insurance. Any thoughts about that?

Dr. Michaelis:

It’s not something that I encounter that much because I’m on the receiving end of that. I guess I would, like every human interaction, I would explore about why.

Why do you not think I should go up and see? If it’s about – I just want at least one consultation to make sure I’m keeping up with things – I’m not sure. It may be that the physician doesn’t think that your disease is serious enough to be seen by – that you need to be seen at an advanced or a tertiary care center. And then maybe there’s a limitation in the number of referrals you get and they want to wait until you actually need to be seen for something where things are going in the wrong direction.

But I would just treat your doctor like a human and ask them why not; let me know. And sometimes you even have to set up an appointment just for a conversation. Just say I’d like to set up an appointment to come in, have a 20 minute conversation where you just say this is what I want to explore with you; that kind of thing. When in doubt, just ask why.

Andrew:

Right. I think be a consumer, Beth, right? You’ve got to advocate for yourself.

Beth:

That’s absolutely true. And you know, it’s important to educate yourself and as Dr. Michaelis said earlier, we’ve lost control when we are affected by these types of diseases. Sometimes that might be within the conversation, too, with your oncology/hematologist to say I believe I would have more control if I also explored having a consultation or working with an additional specialist. And it’s reminding your physician that it is about you gaining control and empowering yourself to be educated. And part of that educating might be expanding your team of care.

Andrew:

Okay, I’m going to do one more question and then remember, we have a whole series of these programs.

This came in from Ina: Dr. Michaelis, my mom was recently diagnosed with ET this week; she had a bone marrow biopsy. Maybe you’ve had one, Beth; I’ve had a bunch of them. And please advise why the bone marrow biopsy is needed and what we should expect to take place when we meet with the hem/onc next week to review the results.

Dr. Michaelis:

That’s an excellent question. Essential thrombocythemia can often be – you can suspect it on the basis of the peripheral blood, but you cannot confirm it and clearly know whether or not the condition is essential thrombocythemia or myelofibrosis without examining the bone marrow. So the recommendations, and your doctors followed the standard of care in diagnosis, is to perform a bone marrow biopsy at diagnosis for everyone suspected of having a myeloproliferative neoplasm. It used to be you didn’t need it for PV, but now that’s a part of the recommendations as well.

So, I think they did the right thing by doing the bone marrow biopsy. When you get together with your doctor, you should expect first off for them to clarify exactly what the diagnosis is, and what data has led them to that. The second thing you should ask them is what risks does this pose to my mom; what are the things we need to worry about? Does this make it more likely for her to have bleeding or blood clotting? Is there anything we need to do about that? Is there a reason why she needs to start treatment? And that treatment should be chosen or based on that risk stratification.

So I would say that your conversation should be about what data led to the diagnosis, how sure we are of that diagnosis, and whether or not her risk status require that she be considered for treatment.

Andrew:

Wow, great answer. That really gave me a lot of information. You mentioned Dr. Ruben Mesa, who we all know along the way. He’s going to be with us on a program we’re going to do in August.

So for all of our viewers today, be sure to be signed up with Patient Power so you get our email alerts, and you’ll be kept informed. There are a lot of programs coming up. There’s even an event that’s going to happen I think June 24th in Chicago. So we’re all plugged in. Dr. Michaelis has been with us a number of times; Erin has been with us before.

So we have this sort of community in the MPNs now. I think virtually now, more than ever before; you are not alone. Beth, you saw Esther and I on Facebook Live, you were telling me. We’re all connected, now and Beth is on a program. Beth, I want to wish you well with your PV, and we’ll have you on another program sometime. Thank you for joining us from Oxnard, north of LA today.

Dr. Michaelis:

Good luck, Beth. Thank you.

Beth:

Thank you both. Thank you.

Andrew:

And Erin, thank you for joining us from Levine Cancer Institute. Please tell Dr. Grunwald hi; give him a hug from me.

Erin:

I will be happy to.

Andrew:

Thank you for being with us once again, the MPN Hero.

Erin:

I was in good company.

Andrew:

Oh, thanks. Laura Michaelis from the Medical College of Wisconsin up there where you have either a lot of daylight or not much daylight in Wisconsin, thanks for being with us. And I know you have a cold; feel better, okay?

Dr. Michaelis:

Thank you very much. Thank you.

Andrew:

Okay. Well, we’ve had a great program. Remember, keep informed about our series. The Living Well series is really designed to keep plugging away at the different issues that we face as MPN patients and family members. I want to thank the Patient Empowerment network; this is really their program, produced by Patient Power. We also want to thank the Insight Corporation for their ongoing support.

In Carlsbad California where it’s sunny today, I hope it’s nice weather where you are. I’m Andrew Schorr, and as I like to say: remember, knowledge can be the best medicine of all.

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