LC Whole Patient Support Archives

Lung cancer can unleash a whirlwind of unexpected emotions and experiences for patients and care partners. You are more than just a patient; more than just a treatment plan.

Whether your concerns are physical, emotional, nutritional, or spiritual, we can help.

More resources for Lung Cancer Whole Patient Support from Patient Empowerment Network.

A Yoga Technique to Increase Relaxation and Reduce Anxiety

Certified Yoga Therapist Raquel Jex Forsgren shares a short yoga and breathing technique to help you reduce anxiety and increase relaxation. You can refer back to these practices in stressful situations to help control your mind and breath.

You can check out more of Raquel’s videos on her YouTube channel, Yoga With Raquel.


Transcript:

Raquel Forsgren:

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.

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.

To see all our Lung Cancer programs, please visit our Lung Cancer page.

Downloadable Program Guide


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.

MedHelp

MedHelp is an online health community that uses technology, data science, and expertise in consumer health behavior to deliver outcomes at mass scale. They help guide people through every step of their health journey and helps them achieve the results they seek.

With MedHelp, you are able to achieve the following:

  • Connect with others just like you to get advice and share your experiences
  • Track your health condition and easily share data with doctors and caregivers
  • Learn from people who have your condition by reading articles and blogs.
  • Ask questions from doctors via a Q&A forum

HealthTunes and MusicMedicine

Imagine a world where music is prescribed as medicine – HealthTunes calls this MusicMedicine – and your music prescription is just a click away.

HealthTunes is the only publicly available online streaming audio service created to improve your physical and mental health by pairing credible medical research with active music links.

Walter Werzowa (a musician, composer, sound inventor, and music producer) founded HealthTunes after learning his son was diagnosed with a rare medical condition. After visiting numerous physicians who recommended surgical treatment, Walter and his wife, Evelyne, decided to have their son listen to music inlaid with binaural beats and isochronic tones. Physicians saw a drastic improvement in his condition and began requesting more information from Walter and Evelyne on how they accomplished such a feat.

Subsequently, Walter decided to share his knowledge of the healing power of music and created the API for HealthTunes in the hopes of assisting others who suffer from complex medical conditions.

HealthTunes’ MusicMedicine regulates the autonomic nervous system and accelerates endogenous processes. Binaural beats, which are the result of two slightly different frequencies, create a third signal in the brain. Coupled with music, binaural beats restore and balance a patient’s physiology.

The goal is to allow everyone access to credible medical research explaining the benefits of the music they listen to. Thus, HealthTunes provides all users access to medical research from knowledgeable institutions as well as music therapy all in one place.

To use HealthTunes, simply go to the website, sign up, and music therapy is at your fingertips. Therapies can be listened to anytime, anywhere internet access is available and no credit card information is necessary. All therapies were created by music composers with medical research in mind to treat specific ailments.

Chemotherapy is very important in fighting cancer but can have unpleasant side effects. HealthTunes music has been shown to relieve chemotherapy symptoms in patients both during and after undergoing treatment.

Therapy for anxiety, depression, stress, as well as numerous other ailments is offered on the HealthTunes site. Chronic pain patients recorded 30 percent less pain perception after undergoing music therapy.

Walter strives to lessen the cost of medical care; therefore, the service is free to all patients. Donations, however, are accepted and greatly appreciated.

UCLA Medical Center Nephrology Department and UCLA Center for East-West Medicine endorse HealthTunes.

HealthTunes’ wish is to help you conquer obstacles you’re faced with while providing you with music therapy you can truly benefit from.

Take the Plunge: How Swimming is Empowering Cancer Patients

People with cancer can stand to benefit from the many positive effects of indulging in swimming. It is one of the top 10 favorite physical activities according to the 2013 Recreation Survey. Swimming for fitness also grew in popularity, jumping to 2nd place behind walking according to PHIT America. It not only keeps you in a good shape but also offers many advantages empowering patients with cancer. From acquiring survival skills to enjoying the soothing effects of the water, swimming is a form of physical and recreational activity that provides immense advantages to everyone.

Swimming is An Empowering Exercise

There’s probably nothing better than swimming. Often dubbed as the perfect workout, it is a less weight-bearing form of exercise supporting your body in the water. It enhances muscle strength, improves endurance and keeps you in a good shape. In addition, research studies show that swimming has positive effects on the mental health. It improves moods, relaxes and calms the body.

For patients affected by cancer, swimming is a physical activity that offers benefits during and after treatment. Studies also show that even those with advanced stage cancer can take advantage of the gains offered by the activity. It helps combat the side effects of the disease by decreasing the intensity of symptoms such as pain, fatigue, and peripheral neuropathy. Through physical activity, people with cancer can relax relieving stress and reducing depression caused by the illness. Quality of life is, therefore, improved through physical activity such as swimming.

A Skill with A Lifetime Value

Swimming not only provides physical and mental advantages to cancer patients, it is also a skill that you can use throughout your lifetime. It equips you with the ability to judge situations in the water, find the best solutions and cope with challenges. Although over half of Americans or 56% know how to swim according to the Red Cross Society, the ability to swim is not merely judged by being able to tread or putting your head above the water. It is also the skill to find a way out of dangerous situations and preserve your life. Swimming teaches you how to stay safe in the water. Moreover, the physical activity enables you to know how to rescue others who are in trouble safely. It also trains you how to overcome any fear that you may have such as being in or near to water and even drowning.

For patients who are going through the cancer disease, swimming is a great form of exercise that offers physical and mental benefits. It helps in decreasing the uncomfortable symptoms of cancer and assists in improving overall wellbeing. Above all, it is a life skill that can save your life and that of others.

How To Cope With Cancer-Related Fatigue

We all know what it’s like to feel tired – physically, mentally and emotionally, but usually after some relaxation and a good night’s sleep, we are ready to take on the world again. When you have cancer, though, rest often isn’t enough. Fatigue caused by cancer and its treatments takes a toll on your stamina along with the emotional effects of cancer. Being diagnosed with cancer is highly stressful and we know that stress affects your state of mind, your sleep, and your energy levels too. Even after adequate sleep or rest, you still feel tired and unable to do the normal, everyday activities you did before with ease. You experience a persistent, whole-body exhaustion. You may find it hard to concentrate or to engage in your usual activities.

What is cancer-related fatigue?

Cancer-related fatigue (CRF) is increasingly recognised as one of the most common and distressing side effects of cancer and its treatments. It has a negative impact on work, social relationships, mood, and daily activities and causes significant impairment in overall quality of life.  It has been estimated that from one quarter to nearly all cancer patients experience fatigue during and after treatment. Although CRF generally improves after therapy is completed, some level of fatigue may persist for months or even years following treatment.  Studies of long-term breast cancer survivors suggest that approximately one-quarter to one-third experience persistent fatigue for up to 10 years after cancer diagnosis.

Some symptoms of cancer-related fatigue, according to the American Cancer Society are:

  • A constant feeling of tiredness that doesn’t ever go away or get better
  • Being more tired than usual before, during, or after activities
  • Feeling too tired to perform normal routine tasks
  • Feeling general weakness or lethargy
  • Lacking energy
  • Being tired even after a good night’s sleep
  • Inability to concentrate or focus
  • Inability to remember
  • Being sad, irritable or depressed
  • Easily frustrated or angered
  • Trouble sleeping/insomnia
  • Difficulty moving arms or legs

What medical help is available for cancer-related fatigue?

A lot of cancer patients do not report fatigue to their doctors because they think that nothing can be done for it. In fact, there are things that can be done to alleviate the debilitating effects of CRF.  If left untreated, fatigue may lead to depression and profoundly diminish your quality of life, so it’s important that you speak to your doctor if fatigue is an issue for you.

Before you can address CRF specifically, your doctor needs to determine if there are any underlying medical issues which may be contributing to your fatigue.  For example, if you are anaemic, you may need to take nutritional supplements like iron. Sometimes fatigue is confused with depression. It’s important, therefore, to be evaluated to distinguish between the two. You may experience one or the other, or both at once. But they are not the same. You may need treatment for depression before you can adequately deal with your fatigue.

6 Everyday Strategies To Cope With CRF

 

Making some adjustments to your everyday routines can also help you cope with CRF. Here are 6 ways to do this.

1. Make deposits in your ‘energy bank’

Don’t expect to be able to do what you could do before cancer. Know your limits and don’t expect too much of yourself. You may find it helpful to think of your energy reserves as your ‘energy bank’. Whenever you do an activity you make a withdrawal. And when you rest you make a deposit. It’s important to balance withdrawals with deposits. If you keep doing too much whenever you feel like you have energy, you’ll run out completely and not have any reserves left for the things that are important.

2. Plan your day

Planning is key when you have fatigue.  Write a ‘To Do’ list each evening so you can prioritize the things you need to do the next day.  By prioritizing in this way, you can use your energy on the activities most important to you. Spread your activities throughout the day during times when you feel best and take rest breaks in between activities.

3. Keep a fatigue diary

Keeping a fatigue diary – where you score your fatigue each day on a scale from 1 to 10, and record your activities – can help you think about patterns in your energy levels throughout the day.    This can make it easier to plan your activities for the times when you have more energy.

4. Do some regular light exercise

Although exercising may be the last thing you feel like doing, if you don’t exercise, you’re more likely to experience fatigue. In fact, a new study found that exercise and psychological interventions may be powerful tools in combatting cancer-related fatigue. Research has shown that there are many benefits to exercise. Not only does it help reduce the symptoms of fatigue, exercise encourages your body to release endorphins – often called ‘feel good hormones’. When released, endorphins can lift your mood and sense of well-being.

5. Eat healthily

When we are exhausted, we tend to gravitate towards processed, junk food which depletes our energy reserves further.  Follow a well-balanced diet (high in protein and carbohydrates, low in sugar) and drink plenty of fluids to avoid dehydration.

6. Adjust your work schedule

Talk to your employer about making adjustments to your work schedule. Discuss the possibility of flexible working hours, reduced working hours or working from home.  Ask colleagues to help you with some of your work.  Talk to your occupational health adviser if you have one. They have a duty to support you doing your job and help you with any health problems that may affect your work.

Though fatigue is a common symptom when you have cancer, there are steps you can take to reduce or cope with it. There’s no one way to diagnose or treat cancer-related fatigue. Try some or all of these coping tips until you find what works for you.

How Your Lifestyle Can Affect Genes That Cause Cancer

There are two schools of thinking about cancer.  School one says that cancer is a hereditary disease, passed from generation to generation.  A good example of this are women who possess the BRCA1 and BRCA2 gene mutation.  Women with this mutation have a 70% lifetime risk of developing breast and/or ovarian cancer.  Angelina Jolie, for example, lost her mother and aunt to cancer and was subsequently found to have the same mutation.

The second school says that cancer can occur due to lifestyle choices.  A good example of this is cigarette smoking. It is the number cause of lung cancer, linked to 80 – 90% of lung cancer cases.

Recently, researchers at the Boston University School of Medicine have introduced another theory about the development of cancer.  They proposed that there are processes within our cells that activate certain sequences of DNA.  Those processes act as on/off switches for the development of cancer.

This idea is based on the evolving science of epigenetics. Epigenetics looks at the way genes express or don’t express themselves as we age.  Those gene changes are thought to be influenced directly as a result of our nutrition and behavior, as well as exposure to toxins in our environment.  In a sense, it’s a hybrid of hereditary disease and lifestyle choices.

Epigenetics is a normal process in our bodies.  For example, all of our DNA is the same, yet cells develop into liver cells, brain cells, muscle cells, etc. because of the way epigenetics turns on and off different cell processes.  But our lifestyle choices can impact the way genes express themselves as well.

Perhaps you’ve heard the expression “Sitting is the new smoking.”  The reason for this is due to research on lifestyle and cancer.  The results of dozens of surveys found that a sedentary lifestyle increases the risks of cancer, specifically colon cancer.  Subjects who spent most of their day sitting were 24% more likely to get colon cancer.  People who watched the most television had a 54% greater risk than those who watched fewer hours.  Uterine cancer was also affected by sitting; women who were the most inactive experienced a 32% great risk.  The female T.V. watchers fared worse; those who watched the most television has a 66% risk of developing uterine cancer.

In all these cases, it’s not the inactivity per se that causes cancer to develop.  It’s the processes of epigenetics that are affected by inactivity that can cause cancer.

It’s a complicated and exciting time.  Next month, more on how unhealthy habits are incorporated into our DNA and passed onto our children.


Sources:

https://blogs.scientificamerican.com/guest-blog/lifestyle-choices-could-affect-gene-sequences-that-code-for-cancer/

http://www.nature.com/scitable/topicpage/epigenetic-influences-and-disease-895

http://www.whatisepigenetics.com/fundamentals/2/

Reducing Your Risk of Cancer

The American Institute for Cancer Research (AICR) estimates that approximately one-third of cases of the most common cancers in the U.S. could be prevented, which accounts for about 374,000 cases of cancer per year. Cancer prevention is action taken to lower the chance of getting cancer therefore reducing the burden and deaths from cancer each year. Since February is Cancer Prevention Month, we wanted to highlight some ways to reduce your risk and protect yourself from cancer.

1. Eat a healthy diet & Stay active

Eating a balanced plant-based diet filled with a variety of vegetables, fruits, soy, nuts, whole grains, and beans can help lower your risk for many types of cancer and will help you maintain a healthy weight.

Adults should get et at least 150 minutes of moderate intensity or 75 minutes of vigorous intensity activity each day (or a combination of these), preferably spread throughout the week. While children and teens are recommended to get at least 1 hour of moderate or vigorous intensity activity each day, with at least 2.5 hours of moderate intensity aerobic activity each week.

2. Protect yourself from the sun

Sun exposure at any age can cause skin cancer. Be especially careful in the sun if you burn easily, spend a lot of time outdoors, or have any of the following physical features:

  • Numerous, irregular, or large moles
  • Freckles
  • Fair skin
  • Blond, red, or light brown hair

To block UV rays try covering-up, wearing sunscreen, wearing a hat, using UV-absorbent shades, and limiting you exposure time.

3. Get immunized

The human papillomavirus (HPV) vaccine helps prevent most cervical cancers and several other kinds of cancer, and the hepatitis B vaccine can help lower liver cancer risk.

4. Avoid risky behavior

Another effective cancer prevention tactic is to avoid risky behaviors that can lead to infections that, in turn, might increase the risk of cancer. Some behaviors to avoid:

  • Excessive alcohol consumption
  • Tanning beds
  • Tobacco use
  • Unsafe sex
  • Sharing needles

5. Get regular medical care and screenings

Along with regular check-ups with your physician to maintain an open health dialogue, cancer screenings should also be scheduled. These include the following:

  • Pap smear – Most women ages 21 to 65 should get Pap tests as part of routine health care. Even if you are not currently sexually active, you should still have a Pap test
  • Colonoscopy – Colon cancer screening should begin at age 50 for most people. If a colonoscopy doesn’t find adenomas or cancer and you don’t have risk factors, the next test should be in ten years.
  • Mammogram – Women should should get mammograms every year starting at age 40, for as long as a woman is in good health
  • Checking skin for irregular moles, etc.

Sources:

https://www.cdc.gov/cancer/dcpc/prevention/

http://www.mcancer.org/cancer-prevention

http://www.mayoclinic.org/healthy-lifestyle/adult-health/in-depth/cancer-prevention/art-20044816

https://www.osha.gov/Publications/OSHA3166/osha3166.html

The digital sherpa™ Program

The digital sherpa™ Program helps cancer patients and care partners become more tech-savvy in order to be empowered in their health and healthcare decisions. The program is currently carried out in two different versions, either a in-person, hands-on digital sherpa™ Workshop or through the creation of a digital sherpa™ Help Desk at well known cancer centers.

Cancer patients or care partners who express a desire to become more competent in Internet and social media skills will meet with college students who have been specially trained as Internet “sherpas”. The students will offer help to find support and informational resources online and may include the following:

  • Information about their disease and other health resources
  • How to get help to become a self-advocate
  • Where to connect with other patients
  • How to become more tech-savvy

Please check out the video below that was produced from our pilot program.

digital sherpa™ Program from Patient Empowerment Network on Vimeo.

2018 Outcomes

In 2018, we carried out this program in partnership with Moffitt Cancer Center and Cancer Support Community, and the infographic below highlights some of the achievements of the Digital Sherpa™ Program.

17 Tips For Patient Engagement

To kick off 2017 and new year of patient engagement and empowerment, we are showcasing 17 tips from patients, caregivers, and leaders throughout the industry. A special thanks to our partner, The Conference Forum and their Patients as Partners US program, for helping to obtain a few of these excellent testimonials. Their tips and advice are as follows.

 

1. Jack Aiello

“Patients and their care partners need to get educated about their disease and become their own best patient advocates.  The internet can be a great resource where disease specialists create videos on topics from disease overview to treatments and side effects.  And by getting 2nd and 3rd opinions from disease specialists, you put yourself in the best possible position to make good decisions with your doctor.”


2. Randy Broad

One very important aspect of treatment, especially at the time of diagnosis, is to understand what treatment options your oncology team is recommending and why.  Many providers have ‘pathways’ which determine how a specific cancer (and stage) be treated.  Be sure to fully understand what’s behind and underneath this directive.  Many times it can be determined based upon cost, not best options currently available.”


3. Matthew Zachary

“Patients have the right to survive with dignity and quality and we deserve to be treated age-appropriately. More so, they also have the right to be made aware of the relevant support resources they are entitled to so they can get busy living. This is what it means to face cancer.”


4. Cindy Chmielewski

“Knowledge is power. Educated patients are empowered. Educate yourself. Join a support community either in-person or online; follow the #mmsm hashtag on Twitter; subscribe to disease appropriate YouTube channels, listen to webcasts/podcasts presented by patient advocacy organizations and engage in meaningful discussions with your healthcare team.

Be a partner in your care. “


5. Jennifer Ahlstrom

“Don’t be afraid to speak up. Patients who ask their doctor questions, ask for explanations and treatment rationales get better outcomes. Myeloma is a very complicated disease and there are now an incredible number of treatment options available for patients. If you don’t feel comfortable asking your doctor questions, it’s time to find another doctor, preferably a myeloma specialist who treats hundreds of myeloma patients.”


6. Marie Ennis-O’Connor

“Becoming an empowered patient means taking personal responsibility for your health. You engage with health care providers and systems in ways that are proactive, rather than reactive. You take positive steps in the direction of the care that is right for you.”


7. Scott Riccio

“Remember that YOU get to define value for your own care.  Nobody can read your mind, though, so you have to share what you value, how it impacts you, and what tradeoffs you are willing to make to get the outcomes YOU want.”


8. Andrew Schorr

“Ask your doctor questions! How can we be sure my diagnosis is 100% accurate? How much experience do you have treating this illness? Are there other tests that can help me get the most on-target treatment for my case? What are all the approved medicines for my situation? Why would you recommend one over another? What clinical trials could be right for me, whether or not you have them at this clinic/hospital?”


9. Esther Schorr

“As a care partner, it really is a time to be hopeful as the advances in cancer treatment are moving very, very fast. As it is for the patient you love, it is key to stay educated about advances in treatment options that might be right, and be actively involved in discussions about genetic testing and clinical trials.  It’s also critical to lean on your personal community…friends, family, counselors…in order to “keep it in the road” and retain realistic optimism. As more and more survivors and care partners reach out to each other and share stories, we all gain insights and perspective – and you will hopefully feel supported along the cancer journey. We are all in it together, and we are here for each other.”


10. Amy Ohm

“Caregivers need self-care to effectively care for a loved one – always make sure to put on your oxygen mask first! It can be incredibly challenging to focus on ones health with the daily demands of care-giving. Make 2017 the year you assess your own health and strive to reduce daily stress. Connecting privately with those who relate and to share experience to learn from others can help. We want you to be health in the New Year!”


11. David Wallace

“It is imperative that you gain a solid understanding of your disease so you can become your own advocate.  Connecting with other knowledgeable patients via social media or online forums to learn what has worked or failed to work for them is a good start.  Understand the treatment options that are available to you.  See an MPN specialist who will work with your local hematologist.  If you are not being treated with care and respect, don’t hesitate to seek a 2nd opinion and change doctors until you receive the level of care you deserve.”


12. Carol Preston

“NEVER hesitate to ask questions.  In fact, write down your questions in advance, take them with you to your appointment and go through them one by one.  Be sure to write down the answers (or get your care partner to take notes) as a short pencil is far better than a long memory.  Better yet, record the QA on your smart phone so that you can listen later to the answers as you’ll retain only about 10% of what the doc tells you during your appointment.”


 13. T.J. Sharpe

“Patients and caregivers can be better engaged in 2017 by reaching out to their patient community and actively becoming involved in the support of fellow patients through person to person and group interaction.  Patients and their caregivers can raise the bar for everyone involved in healthcare so that the expectations of patients as a partner in their care is not just accepted, but standard and demanded by patients.”


14. Marilyn Metcalf

“Set our goals together in the New Year, and then work together on our plans and make them happen.”


15. Durhane Wong-Rieger

“Patients are basically a heterogeneous lot, coming with all types of experiences and talents, as well as desires and needs.  Some patients want to have a voice in high-level  policy and system decision-making; some want to extend a personal hand of support.  The more diverse the channels and opportunities for involvement, the more patients can take active and meaningful roles. Every person naturally wants to feel respected and empowered so it doesn’t take much to engage patients: provide a portal, support, information, acknowledgement and most important action.”


16. Deb Maskens

“Patients and caregivers get information from a wide variety of sources, from personal anecdote to television advertising to medical journals. Empowerment and engagement for patients and caregivers in 2017 needs to start by providing them with more information that is trusted, balanced, and objective. Information is power. Let’s give patients and caregivers the information they need as the first step for them to be empowered and engaged in treatment decisions that are right for them as individuals.”


17. Jeff Folloder

“Resource management.  I’m not talking about managing the funds to pay for treatment or care.  I’m talking about managing you.  I got great advice from a lady in a waiting room at MD Anderson.  She told me that every day we wake up with a bucket of energy that we can spend on anything we want and it’s gone at the end of the day.  We can spend that energy on quality things and be tired and fulfilled.  Or we can spend it on silly things like worry and regret and go to sleep tired and empty.  She’s right.  And I remember her words every day.”

Cancer Support Community Helpline

The Cancer Support Community is an international non-profit organization dedicated to providing support, education and hope to cancer patients. CSC’s website has a wealth of information and resources available, including links to advocacy organizations, online support groups and discussion boards and a Cancer Experience Registry where you can obtain information about your specific cancer and help with research in that area. CSC offers a wonderful service to cancer patients:

Cancer Support Helpline®

Whether you are newly diagnosed with cancer or a long-time cancer survivor or caring for someone with cancer, or a health care professional looking for resources, CSC’s TOLL-FREE Cancer Support Helpline is open Mon-Fri 9 am- 9 pm ET.

You are welcome to call anytime.  If you receive a recording, please leave your name and contact number and one of our counselors will call you as soon as possible.

Please call 1-888-793-9355 and a CSC Call Counselor will be happy to assist you with any of the following concerns:

  • Information about local, regional, or national resources
  • Finding a Cancer Support Community program near you
  • General information about the Cancer Support Community and its services (in-person, online and by phone)
  • Help in talking about some of the emotional and social worries that cancer sometimes brings into our lives
  • Information about, and assistance in, ordering Frankly Speaking educational materials
  • Help finding a nearby support group, online support group or discussion group to connect with others
  • Short-term cancer counseling and emotional support
  • Open to Options™ treatment decision support counseling
  • Make a donation to the Cancer Support Community
  • Access to CancerSupportSource™ online distress screening program
  • Live web chat available during call center hours – CLICK HERE TO CHAT NOW!

 

Disclaimer

The Cancer Support Community provides this information as a service. Publication of this information is not intended to take the place of medical care or the advice of your doctor. The Cancer Support Community strongly suggests consulting your doctor or other health professional about the information presented.

 

 

The Benefits and Pitfalls of Blogging About Your Illness

In his book, The Wounded Storyteller, Arthur Frank, Professor Emeritus of Sociology at the University of Calgary, writes that when we are ill we are wounded not just in body, but in voice. He describes how illness can radically alter how a person relates to the world and how we need to find a way to restore our fractured identity. When I was diagnosed with breast cancer over a decade ago, writing a blog, Journeying Beyond Breast Cancer, helped me express myself, reconnect to a new sense of self, and find my voice again.

Throughout her life, the writer Virginia Woolf maintained that her work was incomplete until it was shared with readers. And I think this is also true of being part of a blogging community. When we share our writing, someone else has heard our voice. Someone else cares and understands. So often, illness causes us to feel isolated and cut off from others. Blogging is a way for us to find a shared sense of connection and community.

the-benefits-and-pitfalls-of-blogging-about-your-illnessYet sharing our story online is not without its pitfalls; the most obvious of which is a loss of privacy. You should consider how revealing your medical history online might have an impact on your family and professional circumstances. How will your employer, co-workers, or other family members view you? Do you risk being over-identified with your illness? For me, disclosure of my own story has evolved from initial anonymity to a point where I now choose to share more openly. However, the degree to which I share information still depends on the space where I share it and the degree of trust I have with the people I share with (for instance I consider my blog a safe space to tell my story, but I am more cautious on Twitter). But what happens if that safe space is violated and our expectations of trust are shattered? When our words are taken out of context or used for a purpose we didn’t intend? Is information shared publicly implicitly available to everyone just because it is in the public domain? What are the ethics of research that includes collecting and analyzing patient stories or observing online behaviour without individuals knowing they are being included in research? In an age when technology has outpaced the ethical underpinnings of research and the culture surrounding privacy has changed profoundly, these are questions we need to find answers to.

Although we understand that what we share online is in the public domain, we nevertheless trust each other to maintain a collective sense of privacy, which includes not having our words reproduced without our knowledge or taken out of context. The issue of maintaining privacy in the public domain was brought into sharp focus two years ago when blogger Lisa Adams became the subject of an online debate. Adams, who blogged and tweeted about her experience of living with end-stage cancer, came to the attention of two journalists who strongly criticised what they called “Adams dying out loud.” Their opinions ignited a firestorm of debate about the public disclosure of illness, and the sharing of personal choices surrounding treatment and death and dying.

Illness makes us vulnerable and learning to navigate the digital landscape while also managing our vulnerability is a skill that we need to master if we are to protect ourselves online. Think carefully about what the process of online disclosure entails. Weigh up what you expect to gain from it and what implications sharing this information might have on your career or family life. If you are a parent or carer who writes about a patient, do you have their permission to share this information? In the case of writing about a child, what future effect might this have on one who cannot give consent or understand the significance of their story being shared so widely?

People have always gathered together to share what they know about health and illness, hoping to help and learn from others. What’s new is that we now have the ability to expand the reach of our conversations at internet speed and at internet scale. What happens in real life happens on line, but faster. This has many benefits, but it also means there is a higher potential for unintended consequences when we have less control over who sees our stories. It’s a good idea to periodically review the privacy settings on your social media accounts to decide if you are comfortable with the level of control you have over the information you share. Ask yourself, if your intended audience were sitting in front of you now, how comfortable would you feel sharing this information? How do you think you’ll feel after sharing it? Are you ready for feedback (positive or negative)? Remember sharing your story online doesn’t have to be all or nothing. Go slowly at the beginning, allow trust to build over time, and share only when you feel ready to do so.

Above all, be courageous in sharing your story. I am filled with gratitude for those who bravely blazed the trail in opening the discussion and decreasing the isolation connected with serious illness. I continue to be in awe of the connections and communities forged in the digital space and I look forward to seeing how this will evolve over time.

 

 

Mental Health & Cancer

Anxiety, fear and depression are commonly associated with life-changing events – especially cancer. People with cancer may find the physical, emotional and social side effects of the disease to be stressful. This stress may result from changes in body image, changes in family or work roles and physical symptoms due to treatment. Family members and caregivers often feel these same stressors, as they fear the loss of a loved one. They may feel angry because someone they love has cancer, frustrated that they “can’t do enough,” or stressed because they have to take on more at home. So many of these feelings are completely normal, but what is typical and when may outside help be needed?

According to The American Cancer Society, signs that the patient or a loved one may need help are the following:

  • Suicidal thoughts (or thoughts of hurting himself or herself)
  • Unable to eat or sleep
  • Lacks interest in usual activities for many days
  • Is unable to find pleasure in things they’ve enjoyed in the past
  • Has emotions that interfere with daily activities and last more than a few days
  • Is confused
  • Has trouble breathing
  • Is sweating more than usual
  • Is very restless
  • Has new or unusual symptoms that cause concern

If you or a loved one have experienced one or more of the above symptoms, there are many options for help.

Speak with your cancer team

If you find any of the above symptoms to be true, one of the first steps may be talking with your cancer team. Your team should be able to answer any questions, talk about your concerns, and, if needed, refer you to a mental health professional. Anxiety occasionally stems from the fear of uncertainty from treatment or medication side effects, so knowing what to expect may be the first step in coping.

Seek support

Once you have spoken with your cancer team and support system to determine a treatment plan, put it into action! Any of the below activities may supplement the treatment prescribed by your doctor in making both you and your loved ones feel less alone and anxious during this difficult time:

  • Training in relaxation, meditation, or stress management
  • Counseling or talk therapy
  • Cancer education sessions
  • Social support in a group setting
  • Online support groups
  • Medications for depression or anxiety

Get moving

Exercise has been proven to improve individuals’ quality of life and physical functionality. Though rest and relaxation are crucial to maintaining a healthy mind and body, regular exercise may help maintain and even improve your health. Exercise may help during treatment by improving balance and physical abilities, lowering the risk of osteoporosis and heart disease, and lessen nausea. Even more importantly than physical health, exercise may improve patients’ self-esteem, mental health and quality of life.

Every individuals’ physical needs and potential are different, so it is important to speak with your doctor about what exercises are best for you. Because the stage and treatment plan for cancer patients differ, so may each patients’ stamina and strength. Staying as active and fit as possible is essential to maintaining physical well-being during treatment, so tailoring an exercise program that fits your ability and preference is essential.


Resources:

cancer.org

cancer.gov

Seven Steps to a Successful Digital Advocacy Strategy

MEO SeptDigital advocacy concerns the ways in which you engage your audience online and inspire them to take action around your cause. Using digital tools and applications can amplify your issue, while giving you new opportunities to listen and engage with supporters, and monitor your progress.

Creating a digital strategy will help you focus on your goals more clearly, choose the right digital tools, promote key messages, and measure outcomes more effectively. Ultimately, the right strategy gives you the best chance of using digital channels (like Facebook, Twitter, Instagram, etc.) to reach the right audiences with the right messages at the right times to advance your advocacy.

Step One: Set Your Communication Goals

The first step to any advocacy strategy is to establish clear objectives and goals that you hope to achieve. What are you trying to accomplish? For example, you might want to increase public understanding of the issues you advocate for, mobilize supporters to take action, or raise funds to support your cause. You will need to set SMART goals, which are:

  • Specific
  • Measurable
  • Attainable
  • Realistic
  • Timebound

Specific – define your goals as clearly as possible.

Measurable – put figures on what you want to achieve e.g. increase visits to the website by 40%; gain 100 new Twitter followers or Facebook Likes.

Attainable – make your goal attainable in terms of the resources and capabilities you have.

Realistic – to be realistic, a goal must represent an objective toward which you are both willing and able to work.

Timebound – your goal should be grounded within a time frame.

Step Two: Define Your Target Audience

Who does your message need to reach? Obviously, you want to reach as many people as possible, but by choosing which audience to prioritize in your digital communications you will improve your reach, enhance relevance and put your resources to the best possible use. Find answers to basic demographic questions about your audience, what issues they are concerned with, alongside which online communities inform, inspire, or influence them. You can then tailor your content more specifically to match your audience.

Step Three: Choose the Right Social Channels

Once you’ve identified your target audience, map this information to social media behavior to help determine which social channels to concentrate on. Publically available reports, like Pew Research Center The Demographics of Social Media Users, can help you with this step. Social media are dynamic and constantly changing. When you develop your digital advocacy strategy, be prepared to be flexible. As new networks emerge you might want to add them to your strategy, but it’s important to always relate this back to your goals and your audience to ensure it fits your plan.

Step Four: Create Compelling Content

What is the key message(s) you need to convey to your target audience? How will you communicate it? Sharing the stories of
real people affected by your cause will be the most powerful and compelling content you can create. Share this content via blogs, videos, podcasts, email, etc. Bear in mind the content that works best on the platforms you have chosen. The continuing growth of visual platforms, such as Pinterest, Snapchat and Instagram mean that incorporating visual content into your digital strategy is important. Whichever type of content you create include a clear call-to-action. Make it clear and unambiguous what the next step is after reading or viewing your content; for instance, sign a petition, share on Twitter and Facebook, or donate to your cause.

Step Five: Implementation

Time is probably the biggest challenge in implementing your strategy. To achieve results and credibility you have to be prepared to commit time regularly to producing and promoting content and engaging with your audience. Decide on how much time you can realistically devote to implementation. Do you have time to write regularly for a blog? Would it be better to make short videos instead? Create an editorial calendar and list the dates and times you intend to post blogs, Facebook posts, Twitter updates, etc. Use a scheduling tool, like HootSuite or Buffer, to schedule you social media updates in advance. There are numerous tools and applications, many of them free, which can help you spend your time more efficiently and productively on social media.

Step Six: Monitor Social Media

It’s important to monitor social media on a regular basis to keep on top of what people are saying about you, your organisation, campaign, or issue. It also gives you an opportunity to find relevant online discussions related to your cause, allows you to adjust your strategy in real time and guides you to key online influencers and opinion leaders who can help amplify your message. Setting up a simple Google Alert (email updates of the latest relevant Google results based on your queries) with relevant keywords is a good place to start. Use a tool like Hashtracking to monitor a particular hashtag, related hashtags, and the top influencers of that hashtag.

Step Seven: Measure and Evaluate

The final step is to measure and evaluate your progress, adjusting your strategy if necessary. Some key metrics to track are the number of followers you attract and retain, which social media channels drive the most traffic to your website, the number of comments you get, and how many times your updates have been shared. Google Analytics will provide you with detailed analytics to measure your website performance. Each of the main social platforms also has their own analytics built in. Other useful tools include:

  • TweetReach measures the reach and exposure data for your tweets
  • SumAll measures your Twitter follower growth, mentions, and engagement
  • Klout measures your online social influence via a “Klout Score”, which is a numerical value between 1 and 100.
  • Spredfast measures data gathered from Facebook, Twitter, YouTube, and Flickr, to show how many people you’ve reached and whether or not your target audience is engaging with you.

Final Thoughts

Digital advocacy helps amplify advocacy efforts by potentially reaching more people, in more places, faster than ever before. It works best when it is aligned with your existing offline tactics. Think about how you can integrate your everyday advocacy activities with your digital strategy to maximize impact. Don’t expect digital advocacy to work right away. It is a strategy that will succeed long-term, rather than be a quick success. If you want to see real results, you must be prepared to commit to it long-term. Finally, keep in mind that social media are constantly changing and evolving, and you will need to keep evaluating your strategy to ensure you are maximizing your opportunities to engage meaningfully with your supporters.

Engagement For Seniors

As the healthcare industry moves towards a more patient-centered model, they cannot forget about the fastest growing segment of our population, the older adults. According to the US Census Bureau, 72 million Americans will be 65 or older by 2030. With this growing and aging population, how can offices, hospitals, and healthcare professionals engage seniors? It’s no secret that engaging people in their own health care, especially through shared medical decision making, results in improved health outcomes, improved patient satisfaction, and cost savings. Below are several examples for how senior engagement can be achieved.

Clarify medical communication

With age comes the natural decline of hearing and seeing, so keeping educational tools more visual and basic is crucial. That coupled with avoiding medical jargon will help older patients become more engaged. According to Solution Reach, keeping it simple is best:

“Although the senior community desires to be more technologically savvy, they are often still learning; they require guidance to catch up to the knowledge and experience of the younger generation. It may seem obvious, but sticking to the basics will ensure that landing pages, advertisements, emails, and other promotional materials are easy to read and understand.”

Engage beyond the office

Going beyond the doctor’s office and utilizing digital technology has been proven to improve the patient experience, such as follow-up prescriptions/appointments, treatment discussions, access to EHRs, and medical reminders. Capstrat highlights adherence problems (i.e. taking medications, exercising, following a specific diet, attending therapy, etc) as a main problem that gets worse with age. Reminders, tips, or motivation via email, snail mail, or social media can help to combat these issues. Understanding and honoring their preferred means of communication is one of the first steps. However, healthcare professionals should still realize they have the same ethical responsibility with these methods as they do in the office.

Don’t forget the caregiver

The need to include the patient’s caregiver is essential for older adults. The caregivers are often times the children of the patient and are the ones handling the finances, medications, transportation to appointments, etc. The caregivers spend a substantial time with the patient, while the doctors and other HCPs time is limited, demonstrating this need to include them. Capstrat suggests incorporating them by adding caregiver contact information onto new-patient forms online and offline, and sending treatment information directly to the caregiver.

Utilize technology

According to Welltok’s Senior Health and Technology Survey, more than 50% of seniors use tech to improve health. This survey also pointed out that most seniors do not use wearable, but would be willing to use a health program accessible on a computer or mobile if recommended by a doctor. What does this mean? Older patients are relatively tech-savvy and are looking for resources that are both useful and useable.

Organize resources

Keeping track, organized, and up to date on all your medical records is a big undertaking. According to MedCity News:

“… there are a lot of resources available from AARP, Medicare, retail pharmacy programs, but it is a lot to manage and navigate. Seniors need help organizing everything they need to accomplish their goals in one place. This population requires a consumer-designed platform offering a single channel for presenting benefit, health-related and other resources to support them.”

The senior population is an expanding group with their own specific needs for engaging in their healthcare. Healthcare entities would be wise to understand, honor, and cater to those needs.


For those older adults that don’t quite have it all figured out yet, Patient Empowerment Network is excited to launch its first digital sherpa™ Workshop this fall in Florida with the hopes of expansion in the future. This workshop is designed to parter the tech-savvy, college students with the not so tech-savvy, older patients with each other for tips and tricks on how to navigate the internet and social media to better their healthcare. Sherpa Logo

References:

www.healthwise.org/insights/healthwiseblog/mmettler/september-2014/2264.aspx

www.solutionreach.com/COMPANY/blog_viewer/are-senior-citizens-engaging-in-healthcare-technology

http://medcitynews.com