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Health Exercises to Tap Into Your Resiliency

The current pandemic the world is facing has caused a whirlwind of emotions, especially for immunocompromised patients, including cancer patients. Every feeling, from grief to sadness, and anger to hopelessness, has been magnified as our minds take a toll and our level of vulnerability has grown.

Right now, we are doing the best we can with the knowledge, experiences, and tools that we have. A couple of ways to utilize these tools and stay grounded during this time include meditation and exercise. Below are a list of resources, including ones I have personally used, that can be utilized to build inner and outer strength.

Walking

A great form of exercise that can be done anywhere and doesn’t require any equipment. During your walks, take in the scenery around you. Challenge yourself by quickening your pace, going up and down hills, or see how far you can go in a specific amount of time.

Yoga

Another activity that requires little to no equipment. Find free videos on YouTube or look to see if a local studio is offering online classes. Yoga allows your mind to calm and your stress hormone levels to reduce as you focus on slower movements and breath work.

Aerobics or high-intensity interval training (HIIT)

Helps improve cardiovascular health and endurance through quick movements done in rounds and can utilize the entire body. YouTube and Instagram are great places to look for these types of exercises. You can also incorporate weights (if you have them) to make it more challenging.

Strength training or weight lifting

Beneficial for both men and women, and burns more calories over time. You don’t have to be buff to lift weights or even have equipment. Buckets filled with heavy items or other things with handles, soup cans, bags of flour, a dish towel, or even body weight can be used to break a sweat. Again, YouTube and Instagram are your places for videos. Pinterest can also be helpful by searching for “body weight exercises,” or “exercises with no equipment.”

  • Mastering the form of each exercise is crucial to avoid injuries. Form > the amount of weight you can lift.
  • Do each exercise slowly. Form a mind-muscle connection.
  • Don’t forget to breathe!
  • Stretch!
  • Favorite exercises:
    • Bicep curls
    • Tricep dips
    • Bent over rows (back)
    • Rear delt flys (deltoids)
    • Upright rows (shoulders/trapezoids)
    • Squats
    • Deadlifts: Romanian, sumo, one-leg, stiff-leg (hamstrings)
    • Calf raises
    • Military press (shoulders)
    • Chest press

Meditation

Meditation is a wonderful practice that can be used to mitigate negative thoughts and distractions. This is important any time, not just during quarantine! One of the best things about meditation: you don’t have to be perfect! Meditation takes dedication and practice. YouTube has free, guided meditations that can be done in any quiet space. Some have someone spreading, while others are simply music. Apps, such as Headspace and Calm, also offer guided meditations.

Are Clinical Trials Too Risky? A Lung Cancer Expert Reviews the Facts.

Are Clinical Trials Too Risky? A Lung Cancer Expert Reviews the Facts. from Patient Empowerment Network on Vimeo.

Some patients fear that clinical trials may be too experimental and risky. Dr. Martin Edelman outlines the clinical trial process and addresses myths surrounding trials. Want to learn more? Download the Program Resource Guide here.

Dr. Martin J. Edelman is Chair of the Department of Hematology/Oncology and Deputy Director for Clinical Research at Fox Chase Cancer Center. More about this expert here.

View more from Fact or Fiction? Lung Cancer


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How Genetic Testing Has Revolutionized Lung Cancer Treatment

 

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Could Advances in Lung Cancer Research Benefit You?


Transcript:

Patricia:

Here’s the last one that I have on my list here. Clinical trials are experimental and risky.

Dr. Edelman:

Yeah. Well, so is the rest of life. So, there generally – is there risk? Yes. Essentially, every patient is always a trial because we for the most part don’t – even in the disease states where we have very active treatment – so, let’s say – for example, we were talking about the EGFR mutation. So, we have excellent drugs. We have a drug now, osimertinib – outstanding drug, easy to take, low risk of side effects.

The earlier generations – there was a lot of rash, diarrhea. That’s been pretty much done away with. But on average, patients benefit from this drug for about a year and a half.

So, that’s not great if you’re 40 or 50 years old. You want to do better. So, what are our current studies? Well, we’re looking – we’re re-addressing a question that we thought had been answered, but really it wasn’t – about, well, what’s the value of chemotherapy plus this drug? What about the value of other drugs?

So, we can’t promise anybody anything, but our current treatments are still not good enough. There are certain diseases, let’s say Hodgkin’s disease, where you know you’re gonna cure almost all the patients up front or testicular cancer, etcetera, where – again, but thanks to trials, clinical trials, we now are at that stage. We’re not there yet in lung cancer, and the reality is is every patient should really be on a study. I think it’s – and we have this problem now in that our studies have also become far more complicated to enter people in because there are many more variables one has to look at it. What’s the molecular background of the tumor? How many prior therapies?

The condition of the patient, their organ function, etcetera – and the regulatory burden has become much, much greater. But clinical patients are in clinical trials. Let’s look at the question. Are they risky? Well, everything is risky, but we do a lot to manage that risk. Patients who are in studies are observed more closely. We have to. It’s the law. There’s frequently additional personnel assigned. They’re usually getting standard of care plus a new treatment or a new treatment followed by the standard of care or some variation of that.

They’re observed, like I said, much more carefully than we would otherwise. And so, I think actually patients on trials generally will do better, and we actually have evidence. Multiple individuals have looked at this – everything from first-in-man trials or early dose escalation studies, controlled studies – that show that patients, even those on the control arm, generally do better than similar types of patients who are not treated on studies because we just are more careful.

And the physician who participates in trials is generally someone who has a greater knowledge of the disease.

The Truth About Managing Lung Cancer Treatment Side Effects

The Truth About Managing Lung Cancer Treatment Side Effects from Patient Empowerment Network on Vimeo.

Are lung cancer treatment side effects avoidable? Dr. Martin Edelman reviews effective management strategies. Want to learn more? Download the Program Resource Guide here.

Dr. Martin J. Edelman is Chair of the Department of Hematology/Oncology and Deputy Director for Clinical Research at Fox Chase Cancer Center. More about this expert here.

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Transcript:

Patricia:

Let’s talk a little bit about some of the concerns that patients have about the side effects. Let’s see: Side effects are unavoidable.

Dr. Edelman:

Well, that’s not true. As I said, what were the side effects? If you go back a couple decades and you ask patients what were they concerned about, many of them were concerned about nausea and vomiting. And that is largely a thing of the past. Many patients will still have some queasiness with treatment, but even our most nausea-producing drugs – we really do have outstanding drugs for the prevention of that. You have to use them. You have to take them.

It’s very important to give them appropriately. There are very excellent guidelines that are out there. Sometimes, patients are still undertreated, no question about that. Not every drug has industry strong backing. There’s one drug – for example, olanzapine, (Zyprexa) was actually developed as an antipsychotic, and I always tell the patients, “No, I don’t think you’re crazy.”

But it’s at a lower dose, and we have excellent, excellent evidence that that drug given for a few evenings after chemotherapy is extraordinarily effective along with the other drugs in preventing nausea and vomiting. So, that’s one thing.

Hair loss is still somewhat inevitable with certain drugs – the taxanes. But many of our regimens don’t cause hair loss.

Or as I tell folks – only you and your hairdresser will know for sure because its hair on the pillow, but the average person won’t pick you out of a crowd. Those are big concerns still. There still are potentially life-threatening effects from chemotherapy, and we spend a lot of time educating people about that. But those are not inevitable, and it’s actually a minority of patients in lung cancer.

One should not confuse – there are different malignancies. Still, the treatments for say leukemia, though even that’s changing, can be extraordinarily toxic or the bone marrow transplant patients. Many, not just lung cancer, but in the other diseases as well – many of the things that people attribute to the drugs are more due to the disease. So, I always say, “The greatest failure and side effects to the drugs are they don’t work well enough because the side effects of the disease can be considerable.” So, that’s the bigger issue. The immunotherapeutic drugs have a rather interesting set of side effects.

They are clearly initially or frequently better tolerated than the older cytotoxics, which still have an extremely valuable place in the treatment and cure of lung cancer. The immunotherapeutics have clearly been quite beneficial, but their side effects can be subtle and far less predictable and can be very severe. Virtually, any organ in the body can be affected by this. We like to say, “If it ends in ‘itis,’ you can get it from immunotherapeutics.”

So, there are lots of side effects, no question. But they can be managed. They can be prevented. They can be treated. Sometimes, we have to abandon a drug. So, people who get severe – what we call immunotherapy-related adverse events – may not be able to continue on their drugs. But even that is not necessarily always the case.

Patricia:

This next one really gets to the heart of the doctor-patient relationship. I shouldn’t share my side effects with my healthcare team because I don’t want them to stop my treatment routine.

Dr. Edelman:

Well, you can’t prevent the side effects if you don’t know about them. And I always would tell patients, I said, “You know, if you’re having a problem, please don’t call me at 4:00 on Friday afternoon. I’m gonna end up sending you to the emergency room, which I may anyway.” But a lot of times, we can solve certain things over the phone. There are a lot of side effects that can be treated and particularly if one is aware early on. So, yeah, you should share the side effects because how’s somebody gonna know how to deal with them?

Now, the problem we run into sometimes is in a population that’s on average 60s and 70s, could be younger. There’re lots of things that can be just part of ordinary life. Everybody gets headaches, back pain, etcetera, etcetera.

We have to treat those sometimes and evaluate them much more aggressively because of the possibility of them being related to disease or drug, but it helps to sort it out. You can’t be too blasé about it because sometimes things need to be looked at very urgently, particularly with immunotherapeutic drugs. Some of the side effects that can be severe can sometimes be very subtle in their onset.

Trustworthy Resources to Help You Learn More About Lung Cancer

Trustworthy Resources to Help You Learn More About Lung Cancer from Patient Empowerment Network on Vimeo.

Expert Dr. Martin Edelman shares credible resources to help lung cancer patients become informed and empowered.

Dr. Martin J. Edelman is Chair of the Department of Hematology/Oncology and Deputy Director for Clinical Research at Fox Chase Cancer Center. More about this expert here.

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Transcript:

Patricia:

Let’s talk a little bit about health literacy. What would you suggest patients use for online resources? What are good resources?

Dr. Edelman:

So, there are some excellent resources. The International Association for the Study of Lung Cancer has resources for patients. The National Coalition of Comprehensive Cancer Center Network (NCCN) has resources. American Society of Clinical Oncology has resources. So, those or American Cancer Society. So, there are some really reliable sources out there. And there’s a great deal that’s very unreliable – people’s Facebook pages. I’ve seen this.

Patricia:

It’s a big place.

Dr. Edelman:

Everybody always – and I think it’s important for people to understand. There will be people who will get something and have a fantastic response. I’ve used anecdotes.

The anecdotes I’ve used are to illustrate the potential hope of benefit. They’re not exceptions to the rule anymore. They’re the good case scenarios. I could have just as many anecdotes of people who didn’t benefit and stuff. And I think it is important going into this – and that’s why we are reassessing patients constantly and getting repeat scans because we don’t necessarily know always – even if something’s 90 percent effective, it means 10 percent of the time it’s not.

And each patient – we’re getting better at individualizing and personalizing therapy, but we’re not perfect yet. And we probably never will be. So, there will always be anecdotes. I think what’s – as a friend of mine puts it – the plural of anecdotes is not data. When I say, “Well, chemoimmunotherapy works.” It’s not because I have anecdotes of that, though anecdotes illustrate the magnitude of benefit.

I have data that shows that the chemoimmunotherapy regimen was compared to chemotherapy and was clearly and unequivocally superior. When I give a statistic that 60 percent of patients, 65 percent, can benefit from those types of regimens. That’s based upon prospective randomized control trials.

Is Lung Cancer Treatment Effective in Older Patients?

Is Lung Cancer Treatment Effective in Older Patients? from Patient Empowerment Network on Vimeo.

Lung cancer expert Dr. Martin Edelman tackles common misconceptions about the effectiveness of lung cancer treatment in elderly patients. Want to learn more? Download the Program Resource Guide here.

Dr. Martin J. Edelman is Chair of the Department of Hematology/Oncology and Deputy Director for Clinical Research at Fox Chase Cancer Center. More about this expert here.

View more from Fact or Fiction? Lung Cancer


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Transcript:

Patricia:

How about this one? Treatment is not effective in older patients.

Dr. Edelman:

Treatment is highly effective in older patients. It’s interesting. So, we had long arguments about, when I started in this field, whether treatment ever worked, and there were a number of studies that showed that chemotherapy – that one platinum was better – what’s called a platinum-based agent – was better than no therapy.

And then that two drugs were better than one drug. And people would say, “Oh, well, that doesn’t work in the elderly. And they should only get one drug.” And that’s because, I guess, their burning bush on the lawn told them this. And the fact is is that then got evaluated in a controlled trial, a very nicely done study by my European colleagues. But what was crucial was that they used somewhat lower doses of chemotherapy, a little bit different schedule of chemotherapy, and it was clearly superior to a single agent. And those were even days before immunotherapeutics and these targeted agents. So, many patients will benefit. You just have to be aware of certain basic principles in geriatric medicine as well as basic principles of lung cancer care.

So, first off, if the patient is elderly but their tumor is characterized by a driver mutation, they get one of the so-called targeted agents. And these are these days very non-toxic, easy to take, and highly effective.

Patients – many are going to be eligible for immunotherapy either as a single agent or combined with chemotherapy. Chemotherapy drugs could certainly be cut in their doses and still preserve much activity and be done safely.

I had a woman with small cell lung cancer. This is now about a year and a half ago or so. And she’s in her 80s. And she came to me because she was told – oh, just sorta get your affairs in order. And her disease was what we term an extensive small cell. The staging system’s a little bit different, but she didn’t have a really vast bulk of disease. And we treated her with standard chemotherapy drugs but at somewhat lower doses and some careful TLC and some other supportive things like growth factors.

She got all of her treatment on an outpatient basis, had an excellent response. We used radiation later to consolidate her treatment, and I see her back every couple of months. I wouldn’t say that she’s necessarily cured of her disease, but she does yoga every day. She lives a full life. She sees her grandchildren. And she’s, I think – I wanna say 83-84 years old. I think she’s quite grateful for that. It’s not the numerical age.

The flipside is if somebody’s 50 years old and they’re extremely ill when they come in, then one has to be very cautious about what one does. We used to say that those patients who come in who are severely impaired should simply get supportive care and hospice services.

And actually, how would I put it? Our lives have gotten a little bit more difficult lately because as things have gotten better for patients – because I can’t necessarily say that as much because some patients may be very susceptible to the effects of – their disease may be very susceptible to the effects of immunotherapy. I had one patient who was a younger gentleman who was on a gurney. He was in his 50s, lost an enormous amount of weight , he was on oxygen. We immediately gave him fluids. My fellow – I had an excellent fellow at the time – came to me and said, “Should we admit him and send him to hospice? Or just send him to hospice?” And I looked, and he had a biomarker that indicated that he might have an excellent response to immunotherapy, so we gave him solely immunotherapy and saw him back a few days later. He was still pretty touch and go. We gave him some fluids. A week after that – still, we were kinda touch and go, but he was still with us.

And then a week after that my medical assistant, comes in, and she says, “You know, he looks a little bit better today.” And he was in a wheelchair that day. And then a few weeks after that, he had a walker, and a few weeks after that a cane and about a year after that was asking me about whether or not he could go on a cruise. Again, I still see this gentleman – a couple weeks ago. It’s now almost two years later. And the question now that we have is – should we stop his treatment? And he is restored to complete full health, has had almost no side effects of treatment.

So again, this is not every patient. Some people will be treated and get every side effect and no benefit, but I think I’ve become a lot more reluctant to say that any patient should not at least be offered the opportunity for treatment knowing what the potential side effects are. And there still are considerable and sometimes severe side effects from therapy.

Does Surgery Cause Lung Cancer to Spread? The Facts.

Does Surgery Cause Lung Cancer to Spread? The Facts. from Patient Empowerment Network on Vimeo.

Could undergoing surgery cause your lung cancer to spread? Dr. Martin Edelman debunks this misconception.

Dr. Martin J. Edelman is Chair of the Department of Hematology/Oncology and Deputy Director for Clinical Research at Fox Chase Cancer Center. More about this expert here.

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Transcript:

Patricia:

Sure. Here’s one I hadn’t heard until just now. Surgery causes lung cancer to spread.

Dr. Edelman:

Yeah, that’s common in certain states. When I was in Maryland that was a biggie.

So, there’s a myth that the air gets to the tumor, and then it spreads. But that’s certainly not true. It certainly is possible that in a bad surgical procedure that disease can be spread, but I think historically what that was was in the days before we had as accurate of radiographic studies. So, it’s kinda interesting. I always say, “I’m not that old, and I began medical school before there were CT scans.” So, the way you would diagnose something was with a chest x-ray. That was your best chest imaging. And the brain you’d image with something called a pneumoencephalogram, which is – you don’t know what that is. Most people don’t, and they should be thankful for that. But we had no real way of knowing these things. So, what would happen is there would be a surgical exploration. They would say, “Well, it looks very localized.” But then you’d go in, and there was lots of disease all over the place.

And for the most part, that doesn’t happen anymore. Now we have CT/PET scans. We have MRIs. Patients before they go to surgery usually have had – our pulmonary physicians will usually have sampled the nodes in the middle of the chest, the mediastinum. So, it isn’t that there aren’t surprises, but there are far fewer. And certainly, a properly done operation should not spread lung cancer. I would emphasize the properly done operation. It is my strong belief that nobody should have surgery for lung cancer from other than a board certified thoracic surgeon who spends their time thinking about lung cancer, preferably in an institution with a fair volume of this.

We know – it should be no surprise to people, practice makes perfect. People who really focus in an area – people at the NCI-Designated Cancer Centers, comprehensive cancer centers – who do a lot of this have greater expertise.

Lung Cancer Treatment Decisions: Which Path is Best for You?

Lung Cancer Treatment Decisions: Which Path is Best for You? from Patient Empowerment Network on Vimeo.

Dr. Martin Edelman reviews key factors that help to determine a treatment course for lung cancer patients.

Dr. Martin J. Edelman is Chair of the Department of Hematology/Oncology and Deputy Director for Clinical Research at Fox Chase Cancer Center. More about this expert here.

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Transcript:

Patricia:

How are you approaching treatment decisions with your patients?

Dr. Edelman:

Well, the treatment decisions that we make – that I make are those that are in ways similar to other medical oncologists. It really depends because some of the patients may first go to a surgeon or whatever. However they come into the system, there are a few key factors in this. First is – make your decision based upon, Number 1, which kind of lung cancer. So, there are two major varieties. You have small cell and non-small cell, and they are treated – they are biologically distinct, and they are treated in distinct ways.

And then the next major consideration is the stage of the tumor, which is our way of expressing how advanced that is and deciding on both the therapy as well as conveying a prognosis and evaluating a patient for a clinical trial. And that’s based upon the size and location of the tumor; presence, absence, and location of lymph nodes; and the presence or absence and, these days, the number of metastatic areas of disease.

And then, lastly, and again depending a little bit upon the stage and interacting with all the others is what condition is the patient in? Anybody can get lung cancer, but still the median is in older individuals.

Many of these patients have compromised cardiac and pulmonary status as well as other diseases of aging, hypertension, cardiac disease, etcetera. Those people – one obviously has to tailor one’s treatments to fit those comorbidities. So, that’s sort of how the basic assessment – obviously, some patients show up with metastatic disease. We know that, but we go through a whole process for this.

The staging system that we use is complicated, and it keeps changing. We’re, gosh, up to version eight of this? I started with version three. I’m not quite sure I’ve fully mastered the current one, and the ninth edition is coming soon. And why does it keep changing? Because our knowledge of the disease keeps changing. The database keeps expanding.

We’re able to be more refined. Molecular variables have not yet fully entered into our considerations. Unquestionably, they will. But basically, one could consider lung cancer – despite the four major stages and multiple substages – that you really have three buckets that people will fit into. They have localized disease, which we will predominantly address with a localized therapy – surgery, radiation. And many of those patients, however, particularly those who might have a lymph node that’s positive, will benefit from chemotherapy to prevent recurrence.

We have patients with locally advanced disease. Primarily, those are patients who have lymph nodes located in the middle of the chest as opposed to more localized disease where if there’s a lymph node present it’s more in the lobe of the lung. Those patients with lymph nodes in the middle of the chest or larger tumors are approached with frequently a combination of chemotherapy, radiation, sometimes surgery.

And then we have patients with advanced disease who will be predominantly treated with drug therapies, which nowadays, depending upon the molecular background of the tumor, could be a targeted treatment if they have a specific mutation.

Something we see most frequently, though certainly not exclusively, in patients with scant or no smoking history, they may be approached with immunotherapy or chemotherapy combined with immunotherapy.

And there are many considerations that go into those decisions. And even in advanced stage, there are certainly roles for surgery and radiation depending upon whether there are structural abnormalities, occasionally whether there are relatively few areas or several areas of metastatic disease. And in the localized and locally advanced disease, our goal is cure in those, though we certainly are not there for every patient yet.

And in advanced disease, it’s extension of life, which is now quite considerable compared to untreated disease. And I think in certain situations, particularly those who only have a single area of metastatic disease, curative treatment is a realistic possibility. And even those with more disseminated disease, we’re now beginning to see a substantial fraction of patients who are still alive at five years or more. So, we’re beginning very cautiously to think that perhaps some of those patients may even be cured of their disease, though I’m not quite ready to say that.

How Genetic Testing Has Revolutionized Lung Cancer Treatment

How Genetic Testing Has Revolutionized Lung Cancer Treatment from Patient Empowerment Network on Vimeo.

Dr. Martin Edelman explains how genetic testing has revolutionized the lung cancer treatment landscape. Want to learn more? Download the Program Resource Guide here.

Dr. Martin J. Edelman is Chair of the Department of Hematology/Oncology and Deputy Director for Clinical Research at Fox Chase Cancer Center. More about this expert here.

View more from Fact or Fiction? Lung Cancer

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Transcript:

Patricia:

How is genetic testing changing the landscape?

Dr. Edelman:

So, genetic testing – and in this case the testing of the tumor, not the germline, not the individual – has been very, very crucial. If you go back about 20 years ago, there was a family of drugs called epidermal growth factor receptor inhibitors or EGFR inhibitors.

And the basic science at the time made it look like these would be best combined with chemotherapy in squamous cell carcinoma. And as it turned out, combined with chemotherapy they weren’t very useful. But as single agents, there were these occasional very dramatic results.

So, that came at a time when we were able to evaluate tumor DNA, sequence it with some degree of ease at a reasonable cost. So, there was a discovery of specific mutations, which were targeted by these drugs. So, it was sort of interesting in that it was the clinical observation that led to the discoveries in biology, not really the other way around.

But then that in turn resulted in looking for other mutations, which were found, and then the development of other drugs – in some cases, the repurposing of other drugs for those. And now we have about a half a dozen very validated targets, each one of which in a small slice of the population – between say 1 percent and 5 percent – 10 percent of the lung cancer population – but these – if the patient has within their cancer that particular mutation, these are drugs that are 80 percent-plus effective and frequently can be administered with relatively little toxicity.

And usually they’ll give them benefit for one-plus years or more. So, that’s been an example of progress there.

Could Advances in Lung Cancer Research Benefit You?

Could Advances in Lung Cancer Research Benefit You? from Patient Empowerment Network on Vimeo.

Expert Dr. Martin Edelman reviews the latest lung cancer research and explains how it may impact patient care. Want to learn more? Download the Program Resource Guide here.

Dr. Martin J. Edelman is Chair of the Department of Hematology/Oncology and Deputy Director for Clinical Research at Fox Chase Cancer Center. More about this expert here.

View more from Fact or Fiction? Lung Cancer


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Transcript:

Patricia:

Let’s start with an overview of lung cancer’s research. Can you tell us a little bit about the field right now?

Dr. Edelman:

So, I think the field has been remarkable over the last few years. There’s been more progress, more drugs, more things that have happened in the last five years than probably the prior 50. It’s been an amazing time both for developments in microbiology as well as in immunotherapy of the disease, which is exciting for all concerned.

For patient’s, of course – really a promise of longer, better lives, even cures where we previously did not see any in advanced disease. For the scientists – an amazing amount of new information. And for clinicians and clinical investigators – just almost too many questions for us to answer.

Patricia:

It sounds like the field is really advancing quickly. What do you attribute that to?

Dr. Edelman:

Well, you know, I think there are a number of things. Everybody always talks about breakthroughs, but breakthroughs really happen after decades of other work. And what’s happening now is really a result of many, many years of different types of work. There were our colleagues in immunology who built this area of cancer immunology for many years – I have to say with much skepticism from many, myself included.

The advances in molecular biology – our abilities to do things with tumors to determine genetics at a rate and a pace and a cost that was previously unimaginable. All of these things have developed in the last few years but really are a result of the decades of work before that. If you look at immunotherapy – probably one of our biggest areas of progress – the roots of that are a century old. So, nothing’s really new. It’s just now we have the technology and the ability to really use it. And then I would also say that we’ve created the infrastructure that lets us test this – the people who have done the studies, the endpoints for the studies, the expertise in doing clinical trials – that also was there for decades, and we frequently were kind of ridiculed at times.

Oh, you’re just testing this drug against that drug, but the reality is is it was those incremental advances. It was the ability to know the endpoints, to refine the populations, to develop the infrastructure that allowed for all of this to happen.

Patricia:

Dr. Edelman, as a researcher in the field, tell us why you’re hopeful about lung cancer research.

Dr. Edelman:

Well, I think that we have gone from trials with very small incremental improvements and frequently a very slow degree of progress where if we had a positive study every two or three years, we were thrilled – to the point where we’ve had an avalanche of positive studies. I don’t think my younger colleagues know what a negative trial looks like anymore. Even our negative trials are pretty impressive. We’ve had studies where an immunotherapy agent was compared with chemotherapy. And it was designed to show that the drug would be better.

And it was just as good, and that was a negative study. That’s the correct interpretation, but still I would point out that that’s quite remarkable because these other drugs had taken us 25-30 years to develop. And now we have another drug with a very different mechanism of action that’s as good potentially. That’s impressive. I think we’ve just had an amazing degree of progress in the last few years. We have far more drugs. We understand far more about the disease – the technology at every point from diagnosis to assessment of response to the ability to evaluate better what we’re not doing well. So, our studies now frequently have biopsies before, during, and after treatment in a way of trying to figure out why is stuff working or not working.

Back in 2006 or so, I proposed a study. We ended up doing it, but it took two or three years because we were requiring a biopsy result – actually, not even a new biopsy but just an archived specimen from the original biopsy to determine eligibility, and there was strong pushback that we would never be able to do that. And now, we routinely are getting biopsies and re-biopsying, and that’s over a brief period of time.

So, we’re getting to get better understanding of the disease, and why stuff works and doesn’t work. And I think that that’s why our progress will accelerate. And I would again emphasize progress only happens – real progress – only through clinical trials. We’ve cured a lot of mice for many decades. A mouse is not a person. You actually have to do the studies patient by patient, and I think we are making substantial progress. We almost have too many things to test right now.

Can Diet and Exercise Reduce MPN Symptoms?

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

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

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

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

See More From the The Path to MPN Empowerment

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Am I Meditating Correctly? Getting the Most Out of Mindfulness

Expert Tips for Managing MPN-Related Anxiety

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


Transcript:

Ryan:

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

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

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

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

Dr. Huberty:

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

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

Dr. Huberty:                

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

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

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

Am I Meditating Correctly? Getting the Most Out of Mindfulness

Am I Meditating Correctly? Getting the Most Out of Mindfulness from Patient Empowerment Network on Vimeo

Dr. Jennifer Huberty explains how mindfulness, such as meditation and yoga, can have an impact on your overall health and well-being.

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

See More From the The Path to MPN Empowerment

Related Programs:

Can Diet and Exercise Reduce MPN Symptoms?

Expert Tips for Managing MPN-Related Anxiety

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


Transcript:

Dr. Huberty:    

If someone is wondering if they’re meditating correctly or not, or if two minutes of meditation is enough, if you turn to the science and the literature in terms of how much meditation you need, nobody knows. For every study that says five minutes, there’s a study that says 20 minutes, there’s a study that says an hour. I think it’s really important that the individual gets in touch with “what works for me.”

I think the most important thing is that if you’re sitting for meditation and you choose to sit for meditation, just simply listening to your breath – when you realize you’re off, thinking about what I’m making for dinner tonight or what’s gonna happen over the Thanksgiving holidays with my family, then you just say, “Oh, thinking,” and then you come back to, “Okay, where’s my breath? I’m breathing in, I’m breathing out. I’m breathing in, I’m breathing out.” So, it’s just being able to do that and not say, “Oh my God, I’m not doing this right, this isn’t working for me.” There is none of that. It’s supposed to be nonjudgment in the present moment.

“Oh, the present moment – I’m thinking. Now, in the present moment, I’m gonna go back to my breath.” So, it’s really understanding that, and I think it’s also important for people to understand that you don’t have to be seated in meditation. You can be standing in meditation, you can be laying in meditation, you can be kneeling in meditation. I think with MPN patients, not all sitting positions recommended in meditation might be comfortable. If you need a pillow under your tail, put a pillow under your tail. There’s no rulebook to say how you need to sit in meditation. I think that’s important.

And, there’s also other ways to be mindful. Coloring can be mindful. Walking and exploring the leaves and the landscape can be mindful. So, I think in our studies, yes, we’re encouraging meditation, using an app, but that’s to give people structure, education, and a background about what is meditation, but then, there is room for expansion to other things.

It’s pretty much the same thing with yoga. You’re quieting your mind; you’re focusing on your breath. There’s no rulebook that says you have to move a certain pace. You’re supposed to move with your breath, so if your breath is slow, your pace is slow. The other thing is that there is no right way to do a pose.

So, again, patients wanna know, “Am I doing this pose right?” Well, I can tell you that if you feel good in the pose, nothing is hurting you, your shoulder doesn’t feel like it’s doing something it shouldn’t, your head doesn’t feel like it’s in the wrong direction, and you’re watching the video and looking at what the instructor’s doing, you’re probably doing the pose just fine.

I think we get stuck on “Is this correct or not?” What we wanna be careful of is safety. You don’t wanna be standing on your head and wondering if you’re doing it correctly. You wanna have a basis, and that’s what we do in our programming, is it’s very basic, very foundational poses that you can learn the practice of meditating in the poses.

Expert Tips for Managing MPN-Related Anxiety

Expert Tips for Managing MPN-Related Anxiety from Patient Empowerment Network on Vimeo

Health-related anxiety and worry can be overwhelming. Dr. Jennifer Huberty provides advice for using complementary approaches to cope with the emotional impact of a chronic cancer, like myeloproliferative neoplasms (MPNs).

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

See More From the The Path to MPN Empowerment

Related Programs:

Can Diet and Exercise Reduce MPN Symptoms?

Am I Meditating Correctly? Getting the Most Out of Mindfulness

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


Transcript:

Dr. Jennifer Huberty: 

With anxiety and worry – it’s like we get in this state of mind that we can’t seem to get out of, and then, thoughts just keep piling in and piling in and adding to more anxiousness and more anxiousness, and so, the key is quieting the mind, and the best way to do that is to focus on your breath, and again, just coming back to the moment, coming back to the moment. You can do body scans where you’re just thinking about where your body is in space, going from the tips of your toes all the way to the top of your head.

I recommend guided meditation for MPN patients, especially because it is difficult. The anxiety and worry is real. The fears are real. This is a – it’s a traumatic event to be diagnosed with any cancer, and the brain is a powerful thing in terms of getting in our way of healing and feeling better, and so, knowing that it’s powerful, we can quiet our mind so that our body can learn to let go. And, I will say that spending that time doing that with the anxiety and worry, there will be physiological symptoms that change – so, heart rate goes down, blood pressure goes down, sweaty palms decrease, stomachaches – those kinds of things will tend to go away as anxiety and worry goes down.

And, the other important thing I would say is a tip for managing is to be self-compassionate. So, that’s a big part of meditation and yoga philosophy, is self-compassion. And so….being okay with being anxious and being okay with being worried, and there’s nothing wrong with that, and it’s completely normal.

And so, learning to be compassionate in ways that you would be compassionate to a sibling, or a parent, or a best friend – use those same compassionate thoughts and feelings toward yourself.

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

Improving Life with MPNs: The Latest Research and How to Get Involved from Patient Empowerment Network on Vimeo

Can yoga and meditation help improve life with an MPN? Researchers Dr. Jennifer Huberty and Ryan Eckert share what they’ve learned in their research in complementary medicine and how you can get involved.

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

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

See More From the The Path to MPN Empowerment

Related Programs:

Can Diet and Exercise Reduce MPN Symptoms?

Am I Meditating Correctly? Getting the Most Out of Mindfulness

Expert Tips for Managing MPN-Related Anxiety


Transcript:

Dr. Huberty:

My name is Jennifer Huberty. I’m an associate professor at Arizona State University in the college of health solutions, and I’m preliminarily a researcher.

I do teach a course a year, but I do research, mostly using complementary approaches delivered digitally, and I focus on cancer patients and also middle-aged pregnancy age lifespan, if you will, of women. So, women’s health and cancer.

Ryan:

My name is Ryan Eckert, and I’m a research coordinator with the Mays Cancer Center, which is at University of Texas Health in San Antonio.

So, in regards to what I’m excited about with the research that we have ongoing, I’m excited about the potential to help improve MPNs’ just quality of life and their well-being in general.

It’s a pretty under-studied area, especially as it relates to MPNs specifically, so there’s been a lot of work over the past couple decades as it relates to pharmacologic and more medicine-derived approaches with MPN patients, and we’re just now kind of realizing that there’s a little bit of a gap in some of the research that we’ve been doing, and there’s some unmet symptom burden needs and quality of life needs among MPN patients, and me, my background is more so in exercise science, and so, I’m all about the complementary approaches and the physical activity-based approaches.

And so, it’s pretty exciting for me to see the field of just cancer research in general, but also the research as it relates to MPN, start to evolve more towards the complementary and alternative approach route as it relates to mindfulness, meditation, yoga, and other physical activity interventions.

Dr. Huberty:

In relation to what I’m excited about with MPN research, I could say ditto to exactly what Ryan just said because he said it very well, and I feel strongly the same, and my background is in exercise physiology, and I’ve been working – helping women and cancer patients adopt physical activity behaviors. But, yoga is a physical activity behavior, but it has this really cool mindfulness component.

And, meditation has this mindfulness component where it’s exciting to see that we can be educating and providing MPN patients with a way to manage their symptoms themselves and rely a little bit less on their physicians in terms of “I’m feeling really anxious. What can I do?” If you’re feeling anxious, we’re giving them the tools that they can use to work on the anxiety themselves.

So, quieting their mind, allowing them to understand that it’s okay to feel anxious, and there’s nothing wrong with them, and if they’re having fears, that that’s normal, and that inviting those feelings and emotions in and just quieting their minds through yoga or meditation is so powerful. And so, I’m really excited about the fact that we’re giving them a tool that’s not just “Here’s a pamphlet, here’s what you should do,” we’re actually providing them an opportunity to practice it, to do it safely in their homes, and we’re also giving them a resource that’s consumer-based.

So, all of our interventions – the yoga and the meditation that we’ve been working on – have been with partners. So, our yoga partner is Udaya.com then, Calm.com, which is the meditation app. And so, these are things that we might provide for patients for free during the study, but when the eight-week or 12-week study is over, typically, any patient, any participant wouldn’t have access to the intervention anymore, but here we are with a consumer-based product that’s available to them.

So, we’ve taught them how to use it, we’ve made them comfortable, we’ve helped them to see that they can see improvements in the way that they feel, and then they have the ability to continue to use this as needed. Symptoms are gonna change over time – less anxious, more anxious, less fatigue, more fatigue, those kinds of things – and this helps them with the ups and downs of symptoms. So, I’m super excited about offering something to the patients that can be a lifelong friend, if you will.

Ryan:

So the MPN quality of life study group is a little bit of an acronym for the myeloproliferative neoplasm quality of life study group, and so, Dr. Mesa has obviously been working in this field of MPN research for decades now, and he had what he used to call the MPN quality of life international study group, and that was basically just a variety of different researchers from the U.S., and also abroad internationally.

Based in the U.S., we have a range of different physicians and researchers across four or five different institutions, and we all tend to focus on very similar research involving MPNs or other blood-related cancers. And so, the MPN quality of life study group is essentially just a collection of those – I think it’s somewhere between 10 and 12 different physicians and researchers that do similar research.

So, in order for patients to find out more about the MPN quality of life study group, they can – so, we do have a website that we just created a little less than a year ago, and it’s just www.mpnqol.com, and if they go there, we just have some information related to what our mission as a group is. We also have a tab on that website that explains all the different researchers and positions that make up the group.

So, if you were interested in, say, a particular researcher or physician, there’s links in there to go to their professional websites, and then, there’s also links within the tab of that website that covers some of the ongoing studies that we have. So, patients can go there, click on that link, and fill out an eligibility survey for a study that they might be interested in, and then, the project coordinator or research assistant will be in touch with them related to their eligibility

5 Holistic Methods Used to Process Grief

The thought of losing someone you love is almost unbearable, but for millions of people each year they must grieve for someone close to them. Grief is an emotion we all face at one time or another in our lives and is completely natural. However, being natural does not make it easy. While we may never truly get over the loss of a loved one [1], there are steps to be taken that can help you process grief and make life a little easier.

Yoga

Grief is an emotional stress that we store within the body and overtime those emotions can help bring us down. Yoga [2] is one way to help loosen that tightness without having it all unravel at once. Yoga allows your mind to soothe yourself by providing mental self-care and at the same time physical activity which is also important for releasing pent up stress or anxiety.

Essential Oils

Essential oils are chemicals that can either be rubbed on the skin or inhaled. Inhaling essential oils helps to stimulate areas of the limbic system that regulate emotion, behavior, long-term memory, breathing, heart rate, and blood pressure.

Each oil, such as rose or sandalwood, provides specific or healing responses depending on the emotion you are trying to inhibit or soothe. For example, rose [3] is commonly used to ease anxiety, depression, headaches, and menstrual cramps.

Getting Enough Sleep

Sleep can be difficult when you are going through a grief cycle [4]. This is because your mind is filled with thoughts about the loss of your loved one. In addition, when you do fall asleep you are likely to be plagued with sleep disruptions such as nightmares. While getting a quality night of sleep can be difficult there are a few things that can be done to help ease yourself into bed. For starters it is important to create an environment to induce sleep. Use dark or calming colors or black out curtains. Essential oils, a white noise machine, and mood music can all help. If all else fails, cuddling up to a loved one like your spouse or pet [5] are shown to fulfill the need for security and comfort.

Exercise

A lack of motivation is one of the most difficult things to overcome when you suffer from grief. Grief can easily swallow you up and keep you hidden from the outside world. This is one of the reasons why exercise is so important for grief sufferers. Endorphins [6] released during exercise reduce our perception of pain – both mental and physical. This helps to create an improved mood and the physical exertion of your body contributes to better sleep, and an overall feeling of accomplishment.

Massage Therapy

Massage therapy [7] utilizes a variety of tools and mechanisms such as oils, music, and level of touch that can help a person experiencing grief. Massage therapy has a long history of improving physical conditions and emotional conditions such as grief. Massage therapy helps to soften the body’s muscle tissues that become when experiencing grief while improving blood circulation an overall state of calm.


Resource Links

[1]  Grief Isn’t Something to Get Over

[2] Grief Yoga

[3] Health Benefits of Rose Essential Oil

[4] Sleep and Grief: Tips and Tricks to Get the Rest You Need

[5] Here’s Why Sleeping With Your Dog Is Actually Good For You

[6] Endorphins: Natural Pain and Stress Fighters

[7] Massage Therapy: What You Need To Know

Exercise and Nutrition Before and After Myeloma Treatment: What You Should Know

Living Well with Multiple Myeloma

Exercise and Nutrition Before and After Myeloma Treatment: What You Should Know from Patient Empowerment Network on Vimeo.

Downloadable Program Guide

Exercise and nutrition are important components to long-term health for everyone. But as a myeloma patient, are there specific tips for exercising safely? Can incorporating simple lifestyle changes improve and maintain good bone health? This webinar, featuring physical therapist Melanie House and dietitian Alexa Welch, both from University of Iowa Hospitals and Clinics, will provide guidance for individuals looking to increase their overall health through diet and exercise.


Transcript:

Andrew Schorr:
Greetings. I’m Andrew Schorr coming to you from Quebec City, Canada. I’m delighted to be here, and hopefully some of our Canadian friends are on with us. We’re going it go around the US as well with some leading experts in this important Patient Empowerment Network program produced by Patient Power. And the program is Exercise and Nutrition Before and After Myeloma Treatment, What You Should Know.

And we have some very knowledgeable experts who will fill you in, so take notes, with stuff you can discuss with your caregiver if you’re a patient, with your family members and for you to know so you do as well as you can living with myeloma whether you are going through treatment like transplant or on multiple drugs. Okay.

Lots to talk about, and we have received many of your questions already, but if you have a question send it in to myeloma@patientpower.info, myeloma@patientpower.info. I want to thank the companies that have provided financial support for this program. We’re very grateful to them. They have no editorial control, but they want to support the myeloma community. Those sponsors are AbbVie Incorporated and Celgene Corporation and Takeda Oncology. So thanks to them. All right. Ready to get started?

Let’s go first to Cleveland, Ohio, where he is joining us by phone, and that is my friend Jim Bond. Welcome back to our program. Thank you for being with us, Jim.

Jim Bond:
Oh, you’re welcome. Thank you for having me. It’s good to be here.

Andrew Schorr:
So, Jim, you were diagnosed with multiple myeloma. What is it, like 26 years ago?

Jim Bond:
Yes, in 1992.

Andrew Schorr:
Okay. You’ve had a variety of treatments and clinical trials, and you’ve had transplant, and then you also developed a second very serious cancer, AML, so you’ve had altogether I think four transplants. Is that right?

Jim Bond:
That’s right.

Andrew Schorr:
Whoa. Okay. Now, we should mention that in a couple of days, Jim, you are going to once again be on your bicycle four days riding 328 miles. What is that ride that you’re doing now for I think the 12th time?

Jim Bond:
It is the 12th time, and it’s the American Cancer Society Pan Ohio Hope Ride, which my wife Kathleen founded and leads. She got me to ride, and I’ve been able to do it 11 straight years and I’m done training. I trained an hour this morning and I’m ready to go, so in two days we start from Cincinnati and four days later 350 of us will arrive in Cleveland, Ohio.

Andrew Schorr:
Okay. Well, we’re all riding with you, Jim. Exercise and physical fitness has played a big role for you, and we’re going to come back to that in a minute, and you’re going to tell your story how your commitment to exercise has really helped you survive myeloma and also get the treatment you needed for acute myeloid leukemia, they call it. So we’ll be back to you, but I want to introduce our other experts.

So let’s go to our experts, medical experts who are in Iowa City, Iowa, at the University of Iowa Hospitals first bringing back to one of our programs oncology physical therapist, a veteran in the field, Melanie House. Melanie, welcome to our program today.

Melanie House:
Thank you, Andrew. It’s great to be here.

Andrew Schorr:
Okay. Thank you. And, Melanie, just to understand, you’ve been working with oncology patients including on the transplant unit there for about how many years?

Melanie House:
Well, oncology patients actually for most of my career. Probably in the early 90s I started working on some of the oncology floors, but I’ve been specific been overseeing the bone marrow transplant unit since January of 2010.

Andrew Schorr:
Okay. And they have some myeloma patients who come through there, right, who have transplant?

Melanie House:
Yes. Actually, that’s a significant part of our population, is the folks with multiple myeloma.

Andrew Schorr:
Okay. We have a lot to talk about. Okay. But you have a colleague I’d like to introduce who is a dietician with oncology patients and also works on the same floor as there with people who are going through a lot including transplant. So Alexa Welsh, thank you for being with us also from the University of Iowa Hospitals.

Alexa Welch
Glad to be here today.

Andrew Schorr:
How long have you been in the dietician field?

Alexa Welch
I have worked as a the dietician for three years, and then I have worked on the same floor as Melanie with the bone marrow transplant patients now for two years.

Andrew Schorr:
Okay. Wow. All right. So let’s start with exercise, Melanie. So, you know, I’ve interviewed a number of myeloma patients over the years, and there are some people who find out they have myeloma when a family member gives them a hug and then they have like cracked ribs, and they never knew that they had this illness they never heard of. They never knew that their bones were at risk, and then they go in and they get this diagnosis. And it’s terrifying. So you think, well, gee, if somebody giving me a hug can crack my ribs and I have myeloma how on earth can I exercise? What do you tell people related to these bone issues?

Melanie House:
Well, I always take time to educate my patients on where their lytic lesions or pathologic fractures may be located. In my experience that’s actually an area where patients often don’t realize, perhaps they’ve never viewed their imaging. And I encourage my patients to better understand that because if you don’t realize where those lesions are then you wouldn’t have good information to guide other activities or precautions that you might need to take.

Andrew Schorr:
Okay. So at step one, know where you have lesions. Step two‑‑but that would freak me out. I’m a leukemia survivor myself and I haven’t had those bone complications, but if I did I would be just terrified to do stuff. But yet, exercise is good for us, right?

Melanie House:
Well, I think‑‑yes. Exercise is good for you as long as it’s in the proper dose, right? And so it needs to be the right intensity, the right frequency, the right load. And so that’s where you really need to work with a professional who has good understanding of where your lesions are and understands the different biomechanical principles. You know, how the muscles might pull on that bone, that could be good or bad. How posture or lifting technique might impact your fracture risk.

So it’s important that there is a professional who’s knowledgeable working with you, a physical therapist that has access to those films or those scans to help inform them giving you the proper prescription for exercise.

Andrew Schorr:
A couple more questions for you now. So some of us know my friends Jack Aiello, who was treated with transplant years ago. He’s doing great. Also like you, Jim, a long‑term survivor of myeloma, but he was left with neuropathy, so he walks with a cane, sometimes he uses a scooter. But yet, you know, he’s aging like all of us and he needs exercise for his body. So what about if you have that complication of neuropathy, which some people do with myeloma?

Melanie House:
As far as exercise, we can find some form of exercise that’s safe anywhere along that spectrum. That all depends on the person’s balance response, their tolerance for weight bearing through their legs because some people have not only those sensory changes but they have more painful kinds of sensory changes with weight bearing.

So, again, it’s very specific to the patient, but the one thing I do want to emphasize about neuropathy is it is not a‑‑I have a lot of patients who say to me, well, I know my balance is bad because I have neuropathy, end of story. And I say to them, well, actually, you know, we have the potential to improve your balance because fortunately your brain is still connected to your muscles through your nerves, and we can recruit other muscles and help them work more efficiently together to improve your balance response.

And so I actually train my patients with neuropathy so that they can improve their balance and have heard countless reports back from patients who were discharged from the hospital and gone on to do outpatient therapy and recovered balance that they never thought they could.

Andrew Schorr:
Wow. How do you do that? Is it like practicing standing on one foot, or give us a clue?

Melanie House:
Well, that is actually‑‑I’m a very practical person, and I work with people that are laborers. You might work with a truck driver or somebody who is a farmer, and these aren’t individuals that are typically going to see (?) a gal at tai chi or something like that, and it is that simple. But if you can challenge yourself in single‑limb balance and do it safely that is really going to force your nervous system to have to respond more quickly and efficiently.

That is actually the test that I do and the exercise that I prescribe, but I set them up to do it safely. So if you can do this test and this exercise standing in a corner in your home where two pieces of dry wall come together with a chair in front of you then you’ve got the walls that can catch you behind and to the sides with the chair in front of you so that you can catch your balance if you need to and when you need to.

Yes, single‑limb balance is a great way to challenge ourselves. And you might get the feedback, well, I never stand on one leg, and to that I say, actually when we walk we’re standing on one leg over and over. So it does prepare a person to be better on uneven surfaces, slopes and conditions like that.

Andrew Schorr:
Okay. And we were talking about bone complications, and obviously if you’re worried about these lesions and you fall, which you might if you don’t have the best balance‑‑

Melanie House:
Right.

Andrew Schorr:
‑‑and that triggers more bone issues.

Melanie House:
Correct.

Andrew Schorr:
So we don’t want to really understate balance is important, and many of us and the people typically, not always, with myeloma are older, where balance isn’t as good anyway. So balance, we got to think about balance, right?

Melanie House:
Very important. Very important.

Andrew Schorr:
Okay. All right. Let’s talk a little bit about nutrition, Alexa, for a minute. So there you are in the transplant unit, and Melanie was mentioning a number of patients who come through are people being treated for myeloma. When you get blasted or even with less intensive transplant there are a lot of issues about feeling like you can eat. Maybe you have mouth issues, pain, etc.

So first let’s talk about somebody getting ready for transplant because that’s still used in myeloma in some quarters. How can somebody fortify themselves if they’re told, well, transplant is what we’re recommending for you?

Alexa Welch
So one of the most important things we want patients to be aware of before transplant is maintaining your weight. Try not to lose any weight. We don’t want you losing muscle or losing strength at all before transplant. So eating a well‑balanced diet while you can, while your appetite is still good. Eat from all the food groups. Get your fruits and veggies in. Get your proteins in. Keep your muscles strong. Keep your weight up. That’s pretty much the coming into transplant being prepped and as strong as possible.

Andrew Schorr:
Okay. But you’re sick going into transplant, so is this like I don’t want to say force feeding, but mean if there’s a care partner there, are they saying, George, eat your vegetables. You’re 72 years old. I mean what‑‑is it‑‑you have to make an effort I guess.

Alexa Welch
Yes, so actually most of the time when I see patients present on day one of hospital admission they are usually feeling pretty well and have been eating well at home and actually have not been losing weight usually. So sometimes when they’re first diagnosed they’ve lost some weight. They weren’t eating well. They were tired, they didn’t know why. That is usually behind them before they come in for transplant.

So typically actually when they get here they are feeling pretty good and have been eating pretty well. It’s going into their admission where they’re getting the chemo and they’re getting transplant that they start to not feel very well again.

Andrew Schorr:
Okay. Let’s talk about that. So people‑‑and of course we have groups in myeloma going through different kinds of treatment. Let’s talk about transplant for a second. If they’re on your unit how do you help them with their diet when, let’s face it, this is rough business. And Jim’s been through it four times. We’ll talk to him about it. But from your point of view how do you help people stay strong?

Alexa Welch
Yes, nutrition is very individualized just like Melanie was saying can for exercise. You just kind of have to figure out where the patient is and what they’re struggling with most. Some of the most common side effects are going to be loss of appetite, mouth sores, nausea, vomiting. We kind of take each of those individually.

So loss of appetite, typically we recommend doing smaller meals more often throughout the day instead of forcing yourself to eat three big meals. When you don’t have an appetite and you’re not hungry and you’re forcing food down sometimes it’s easier to force a smaller amount and try that every couple hours instead of sitting down to a big, overwhelming meal that you can barely even get three bites down and then you just feel hopeless because there’s no way you can finish all that food at once.

So sometimes just having snacks like peanut butter and crackers or fruit and cottage cheese or something small like that and breaking that up throughout the day helps get in enough calories and protein so that you’re not losing weight or losing strength. So usually that is what we do for loss of appetite when you are kind of force feeding. And then when you get to that point we’re not really super worried about eating from all the food groups, so if you’re not able to get your fruits or your veggies in for those few days I’m not going to be super concerned. Or a milkshake is the only thing that sounds good, then absolutely we want you getting your calories and getting your protein that way.

Andrew Schorr:
I’m glad to hear you say that because my‑‑my little kid when I went through chemo would bring me a great chocolate milkshake and I didn’t feel guilty at all. So that’s okay. You’re giving us permission.

Alexa Welch
Absolutely, yes. Absolutely. And I think most of my doctors and team agree with that, that if that’s the only thing that they can get down, then we’re definitely not telling them that they cannot have that.

For nausea and vomiting, usually our pharmacists and our doctors have medications that they can get on board to help, antinausea, antivomiting medications that help control that. And then from my end I just make sure my patients know that right after they get a dose of that medication is when they should try to order some food or eat some food so that that’s fully kicked in and they can try to get as much food down and keep it down as possible. Obviously, if you’re force feeding yourself and it’s going to come back up, it doesn’t do any good. So medication does usually help control the nausea. We’ve just got to make sure that we find the right cocktail for them.

Andrew Schorr:
All right. Post‑transplant, and this may be for people who are on these two‑, three‑, four‑drug combinations now for myeloma, what are you recommending now for a healthy diet? We’re doing some recipes on our website and people say try this, try that, but what are you recommending so that people can regain their strength or be as strong as they can because they’re probably getting some ongoing medicine?

Alexa Welch
Yeah, so appetite usually is kind of slow to come back after transplant. I do hear from my patients who have left and then either come back for a second transplant or hear from our outpatient dietician that works with them that going home just helps your appetite too. Being able to eat your own food in your own home helps a lot. Usually as soon as appetite comes back patients are able to kind of eat, you know, back to normal, back to three meals a day instead of snacking throughout the day.

Recovering, honestly, is still just adequate calories, adequate protein so that they’re still not losing weight. I still never encourage weight loss even after transplant is done because that can be muscle loss and can affect your strength overall. We want you to not be losing weight after transplant as well. And then in general I do a food safety education with patients before they leave the hospital, so making sure‑‑you know, because after transplant your immune system is still not perfect, and we want to make sure that we are eliminating as much bacteria from the food you’re eating so that doesn’t cause any issues, you don’t get any food‑borne illnesses. So we go over that kind of stuff.

Besides the food safety and then adequate calories, adequate protein, you know, weighing themselves, making sure they’re not losing weight. That’s pretty much it. We just want you to stay strong and make sure you’re eating well. And then once you are feeling a little bit better focusing again back on that balanced nutrition, so eating from all the food groups and getting your fruits and veggies in and all that.

Andrew Schorr:
One last question for you now. So there are these products you can get at the supermarket, you know I don’t know the different brands, Ensure and I’m sure there are other brands, high calorie. Do you recommend that to people if they’re not eating a plateful of food?

Alexa Welsh:
Yes, absolutely, especially when they’re in the hospital and their appetites are bad and they’re not eating very much food or they can’t force down solids sometimes liquids do go down better. We use Ensure here. That’s just who our contract is through, but Boost is an equivalent. Equate, or the Walmart brand make their own. That’s an equivalent. I think Costco and Sam’s will have their own.

They all essentially serve the same purpose, which is higher calorie, higher protein in a smaller amount and so that you’re not again having to force feed yourself all day long when you don’t feel well. I would say those are indicated again when your appetite is not very good or you’re having issuing with nausea and vomiting and maybe that’s the only thing that stays down. But once your appetite is back and you’re eating better those aren’t really necessary as soon as you’re able to maintain your weight on just food.

Andrew Schorr:
Okay. We have a lot more to talk about about food and exercise, but Jim’s lived this. So, Jim, you’ve been through transplant. You’ve been 26 some‑odd years. You’re riding a bike, but you’ve been in and out of hospitals and you’ve had your highs and lows. First of all about exercise. Jim Bond, what would you say to people about the benefit of exercise when you have this diagnosis?

Jim Bond:
I’d say it’s one of the key reasons that I’m alive today. And, Alexa, I agree with everything you said, and I’d just like to add a couple personal notes on my diet. I have gone through four stem cell transplants, and what I made myself do is get out of bed, starting with the first one, and it was hard because I was knocked down with the drugs they gave me. But I found that by getting out of bed and then when I was able take a few steps, and then walking around the floor pulling my IV behind me, it gave me‑‑it gave me‑‑it would tire me out, keep me from sleeping in the afternoon, and it actually helped stimulate my appetite. So I would recommend that you try that as much as you can.

If you can’t get out of bed yet just make yourself‑‑I made myself sit up in the bed as long as I could, and that sounds trivial but at times it was not trivial. And, Alexa, my wife, Kathleen, who is my caregiver, she found a high‑calorie, high‑protein drink that she brought in, and I found different flavors work for me. Orange was my favorite. But that was‑‑to me is what was key.

I found what appealed to me food‑wise, and I just ate as much of that as I could. I didn’t worry too much about three food groups. I was too sick. But when I found something that worked for me I would do it. I would also order all three of my meals when I woke up in the morning, and when they arrived that gave me the motivation to, okay, try something. If I put off ordering, then I might not even have the desire to order. So that was a little bit helpful for me.

But exercise has been key throughout my battle with cancers. In fact, exercise saved my life, as you referred earlier. I was‑‑I was 64 years old. I had lived with myeloma successfully for I don’t know many years, and then I got leukemia. And it was the kind of leukemia that’s treatment related and they said, hey, Jim, the only way you can live is by getting yet another transplant.

So they threw me in the hospital for what turned out to be three months solid. They got my leukemia down. They found a match on the matching database, and they came in my room, and I was thrilled. I said, great. When do I get the stem cells? And they said, well, we’re not sure you can live through another transplant, and I said, but that’s the only way I can live. And they said, but we can’t kill you.

So I pleaded my case. They came back and they said, Jim, the doctors who were voting against you on our committee, they changed their mind and voted yes when they heard that two months ago you cycled 328 miles, four days in the American Cancer Society Pan Ohio Hope Ride a month ago. So the exercise of not only training and riding in the bike but just every day doing something, that saved my life because they were not going to give me that‑‑turned out to be a German woman’s stem cells. They said I was not a good risk until they heard what exercise did for me.

And that’s really been true all through this thing. By exercising, doing something every day, I think it made my body able to take more and more treatments because, as we know, today myeloma is still not curable so when it comes back I want to be as strong as I can to make myself tolerate another one. Now, each day what I think of as my mantra is to be on my feet not on my seat. And right now I’m standing up talking to you because I think even standing is better than sitting. And Melanie’s great guidance at a seminar we were at helped me understand that walking is really good for us and standing is better than sitting. Sometimes it’s hard, but I make myself do that.

Andrew Schorr:
Right. Oh, boy, what a great story. And now let’s go to the guru here, Melanie. So, Melanie, I got as a Father’s Day gift a Fitbit. Somebody may get a bigger one, a smaller one, an Apple watch or just count their steps somehow. So today Esther and I are in Quebec City, where we are partly on vacation. We did 11,000 steps. And I’m a two‑time cancer survivor, chronic lymphocytic leukemia and myelofibrosis.

So, Melanie, just walking, is that good? I mean, I didn’t jog and I didn’t lift weights today, but I walked.

Melanie House:
So that is a huge accomplishment, especially when you think about what you achieved by walking. Something that people don’t realize is that‑‑earlier you mentioned the importance of load bearing to the bones in order to stimulate bone density. Well, people don’t realize that when we’re walking because of our body weight and the influence of gravity when your foot hits the ground your bones actually experience about one and a half times your body weight. So you are actually doing an appropriate dose of loading in those long bones in your legs, for example. So you’ve gotten some weight bearing in. You’ve gotten some endurance exercise in. Helps to build your cardiovascular system.

And the other thing is that walking I do want to mention because a lot of my patients, they’re very fixated on walking and I applaud them, but if we are trying to prepare people to be able to do other things like climb their stairs, then we do have to add a different type of exercise to prepare them for that.

Andrew Schorr:
Okay. What’s that? So how do I‑‑or our friend Cindy (?) Chimileski and some of the other myeloma patients have even done these mountain climbs, which have been incredible. But how do you prepare for climbing? Steps or mountain?

Melanie House:
So as it turns out, you practice for the test for most things. So if what you need to be able to do is climb stairs we need to either be climbing stairs while you are in the hospital, or in our case because we know that our patients are prone to getting low blood pressures while they’re here, it’s usually I think a side effect of the chemotherapy, then we have gone to what what’s called the NuStep. That’s the name of an exercise machine that is basically a seated stepper. So that is one way that we’re able to get people working on their stair climbing muscles in a safe with way while they’re hospitalized.

But even an exercise like bridging that’s something that can be done lying in the bed. For my patients that can’t get in the hallway we’re doing a bridging exercise which is working all of the same muscles at zero percent risk of falling down because they’re already laying in bed.

And some people like to do squat exercises which can be done and should be done over a chair or over the bed. But the one precaution there if you are dealing with fluctuations in blood pressure is if you’re doing that sit‑to‑stand motion repeatedly that could bring on that sense of light‑headedness or weakness because of the drop in blood pressure.

Andrew Schorr:
We talked about bone complications, and we were talking about people going through transplant, different medicines. So we have highs and lows with any of these blood cancers. So you and I were talking before the program and you were talking about people being aware of their numbers, their blood test numbers.

Melanie House:
Right.

Andrew Schorr:
So talk about that a little bit as to us having a clear idea of where we are, not just do we have a lesion in a bone somewhere but about our blood.

Melanie House:
So the most common complaint that I hear people say is I’m just so tired, or I get short of breath when I’m doing stairs or walking, and I think there were each some participants today that sent in some questions asking about what can I do to address my shortness of breath. And the first thing that I think about as a clinician is where are your numbers at for your hemoglobin or your red blood cell count, because our red blood cells, they are the vehicles that actually deliver oxygen to our muscles and to our brain.

And one of the most important muscles that must get oxygen is actually your heart, and so it is important to recognize whether you’re anemic. If you’re anemic I can tell you right now there is not a single reference that I could find that would support you or support me prescribing you vigorous aerobic exercise because anemia means you’re at about half of your normal amount of red blood cells yet you’re trying to do vigorous exercise. The muscles that are doing the work are going to aggressively be pulling those oxygen molecules off of the red blood cells, but you only have half the number of red blood cells that you should have to deliver oxygen.

So it doesn’t matter if your oxygen saturation probe says you’re 100 saturated. That just means that those half of your red blood cells that you have happen to be fully loaded, but there’s not enough of them to safely do vigorous aerobic exercise, and your heart could suffer the consequences. I’ve had patients who actually did induce a heart attack just from walking at a time when their hemoglobin was very low and when their blood pressure was low.

Andrew Schorr:
Okay. So let’s go over a couple things we talked about with you. One is related to bone complications, understand where you have bones that are at risk.

Melanie House:
Correct.

Andrew Schorr:
Right? Okay. That’s the first thing. And hopefully there are bone‑‑there are medications now that some people have discussed with their doctor that can try to slow the progression of those bone complications. Okay. So that’s part one. Part two is you talked about balance. That’s so important. Even if you have neuropathy don’t be freaked out that you can’t develop balance. And then related to knowing your blood counts so that what you’re pushing your body to do is healthy.

Melanie House:
Correct. Right.

Andrew Schorr:
Okay. All right. Got it. We’re going to come back for some more. I want to get some specific exercises. So walking is good. Climbing, if you have stairs in your house, those kinds of things, or if you’re training for one of these myeloma challenge trips, whatever it is, we’ll talk about that more in a minute.

Alexa, so we talked‑‑you keep saying, you know, fruits and vegetables and balanced diet and all that, but patients we have are friends in the myeloma community say, well I’m going to do this special diet in their effort to take back to control where cancer has kind of tried to take control away from them. So how do you feel about special diets, whether it’s meat, vegan, you know? How do you feel about that?

Alexa Welch
So some of those diets just end up being overly restrictive or totally cut out certain food groups, which is not‑‑I mean, there is just not enough evidence out there to support any of those restrictive diets actually really helping. Cutting out food groups like that sometimes results in weight loss, which, as I have mentioned a few times before, that’s definitely not the goal. We don’t want you losing weight. Don’t want you losing muscle.

And a lot of times when you’re sick and you have cancer and you’re going through treatment, any time you’re losing weight unfortunately it’s muscle loss. It’s not fat loss. And so then again that results in weakness and poor outcomes as far as response to treatment and recovery. So, yeah, some of those special diets, I mean, I would have to take it patient by patient if they feel very strongly about it, but, yeah, a lot of times they’re just really restrictive on certain food groups that they can’t have or should cut out totally. So I don’t usually recommend those.

Andrew Schorr:
Okay. So a couple of questions. Maybe these are myths or not. So some people have wondered, does sugar intake feed the cancer cells?

Alexa Welch
So a lot of the foods that we eat, all carbohydrate food, so whether it’s fruit, grains, rice, milk has carbohydrates in it, any carbohydrate that we take in will break down to a molecule called glucose, which are‑‑all of our cells in our body need glucose to function properly. It’s the energy that they use. So whether those carbohydrates are coming from sugar, artificial sugars or added sugars or natural sugars from fruits, they all break down to glucose.

We cannot control which cells get the glucose that we take in. Once we eat it, our body does with it what it will, so the cancer cells just happen to be very glucose hungry all the time, so they will take up and use a lot of that glucose. That being said, if you’re not eating enough glucose or not eating enough carbohydrates in general your body will break down your muscle stores to get that glucose.

And that is why you don’t want to be restricting certain food groups, especially carbohydrates because the rest of your body still needs the energy to carry on the normal functions of everyday life. So you shouldn’t be cutting out some of those food groups like the carbohydrates that are fueling the rest of your body too.

Andrew Schorr:
Okay. Another question, juicing. So people have all kinds of‑‑there are juicers you can buy, and your best friend down the street will say, oh, you’ve been diagnosed with cancer and you should be juicing, carrot juice and this juice and that juice. Any comment about that?

Alexa Welch
Yeah, so I just don’t see the issue with eating the whole food is. The whole fruit or the whole vegetable that you’re juicing, you’re taking out a lot of the fiber. You’re taking out a lot of what keeps you full, the substance to it, so then you’re having to spend a ton of money on groceries relies to get less benefit, if you ask me, because you’re taking out, again, that fiber that’s very beneficial for keeping you full, helps cholesterol.

So those are not things that you want to be leaving out of those foods that you’re taking in. You still get all the vitamins, all the minerals from those fruits and vegetables, but, yeah, eating the whole thing is more beneficial.

Andrew Schorr:
Okay. You were being conscious of our diet at the grocery store. What about the health food store, the pharmacy about dietary supplements? Comments about that?

Alexa Welch
Yeah. So one thing to be careful about any over‑the‑counter supplements like that are not FDA regulated. So you want to be careful that if you’re taking any dietary supplements, herbal supplements, any extra vitamin, C, A, whatever, that you’re clearing that with your doctor, your physician, your oncologist, your pharmacist, talking to your medical team about that and making sure that they are okay with you taking those extra supplements. Again, they are not FDA regulated, so just because they say something is in it, that hasn’t been tested. So you want to be very careful about that.

And some of those supplements can interact with certain chemo drugs. There are certain medications that you might be on every day, so you want to again clear that with either a pharmacist or a physician to make sure that it’s okay if you’re going to take any supplements like that.

Andrew Schorr:
Okay. So when I go to the gym they have a little store in the front, and they have those huge jars of protein powder. So you’re saying even that, check with my doctor.

Alexa Welch
Yes. Especially‑‑I mean, you want to make sure that if you’re going to do the protein powders like you want to make sure that it’s a brand that you trust. So in general bigger brands like Walmart’s brand or some of the‑‑like Abbott, who we get Ensure from, they have their own brand of protein. Some bigger brands like that are going to be ones that you can trust because if they were putting‑‑you know, you hear myths about people having like actually sawdust in their protein instead of real protein powder.

So those are the kinds of things you want to avoid. Usually big companies like that are more trustworthy because if they were found to have bad ingredients in their protein powders they would have more to lose essentially than some of the little companies you’re buying online that you don’t want to necessarily trust. Generally, if it says 100 percent whey protein 100 percent soy protein, those are a little bit more trustworthy.

And always, again, good idea to just run it by your doctor make sure they’re okay with it, or ask the dietician to read the label for you. Some grocery stores have dieticians that work there. Some gyms have dieticians, so use your resources.

Andrew Schorr:
Right. I will mention to people now, so we go to this ASH, American Society of Hematology medical meeting, thousands of doctors talking about myeloma among other cancers from around the world, and so now we’re talking about often four‑drug combinations for people with myeloma. So if you go into a store they don’t know that you’re taking drug A, B, C, D. They probably never heard of them nor know the profiles of those drugs and how it will line up with something they’re going to offer you. You’re not just a super healthy person who is taking no drugs coming off the street, so you have to check.

Okay. So, Jim, you’ve been listening, and you’re about to ride in a couple of days again 328 files. Now you’re of course just a subject of one, but, Jim, what do you eat? What is your diet, whether it’s when you’re doing these rides or just day in day out?

Jim Bond:
I get asked that a lot, and there’s a lot of people that really do focus on special diets. I do not focus on anything special in my diet. I focus on trying to maintain my weight. I do exercise, and for some reason since I’ve had cancer and the transplants I really have to make myself eat as much what I consider healthy food. For example, my lunch today consisted of a meat sandwich, potato chips and an apple. And that’s typical. And for breakfast I eat eggs, meat, toast and potatoes, which is‑‑turns out to be my best meal. It’s my best appetite. And a normal dinner, you know.

Yeah, we have vegetables. We have meat. I love corn on the cob in Ohio. It’s great. But I don’t worry about anything really special. I want to keep my weight up. So when I go in, and I do go in monthly for a bone strengthener I’ve been getting for 24 years now, the biggest surprise for me is, okay, how did I do on weight this month. And when it’s higher I’m happy. And typically the nurses frown at me because they’re trying to lose a little weight, but I’m always trying to maintain or keep my weight.

Now, another reason‑‑I do pound a lot of liquids. My kidneys, I was told, because of the type of myeloma I had, I was told, look, Jim, your kidneys and your bones are at risk. So they said drink, keep yourself well hydrated especially when you’re riding your bike in the summer in July in Ohio. So I drink a lot of water with something in it, you know, a Gatorade or something flavored, not just pure water. But that’s really important to me.

And yeah, it’s inconvenient. Gets me up a lot at night, you know, going to the bathroom, but I believe it’s worth it. And it drives my sodium down. When I get my chems every quarter my glucose and the rest of them are fine, but it’s all I can do to get my sodium into the normal range. So, believe it or not, even with the doctor’s okay they said, Jim, eat more salty foods, which I know is kind of weird, but that’s the way I roll, and so I really don’t worry about that.

It’s the bones though. I do worry about my bones. I’ve had a lot of bone involvement. I’ve got metal holding some of them together, but I’m lucky enough to be able to walk on my own, ride my bike. But it’s taught me, Jim, cut down on the risk. Stay off ice. Stay off step ladders, stay off stools. It’s just not worth it. So I try to do that.

But one comment you made is be sure to check with your doctor on what seems like it’s something that’s not worth it. Green tea is a good example of something a friend of mine who is a myeloma patient had no idea he should have cleared that with his doctor. Because he thought green tea, that’s fine, only to find out from his doctor, no, the medication he was taking was actually nullified by the green tea. So it’s really a good idea to run what you think is not very harmful, run those things by your doctor or nurse and make sure they’re okay with that.

But every case is different, like you said, (?) Jack, and for some reason it’s worked out pretty well for me. But I do take a few‑‑I do take a few vitamins that leading hospitals have recommended, and they’re for neuropathy and hopefully to keep the myeloma away. And I’m happy to share things, but you can get me‑‑you can find me on the internet or through somebody.

But the thing is you can’t just willy‑nilly take things. You’ve got to run them through your medical team because your case is, you’re own case, each case is different, and, sure, it’s great to talk to people but just run it by somebody.

Andrew Schorr:
Right. All good points. Okay. We’ve been getting in questions, and if you have a question now send it in to myeloma@patientpower.info, myeloma@patientpower.info.

Here’s a question we got in from Laurie. Laurie says, my husband has 13 vertebral fractures from his myeloma. He’s not a candidate for the various surgeries (?) Inaudible, kyphoplasty, etc., to do repairs, so he’s been doing plank exercises for two years, and he has a brace and support.

So one of the things he’s wondering is could tape, Melanie, like athletes do, kind of some kind of taping when he does exercise be supportive for him? Would that be a good idea, like athletic tape?

Melanie House:
Well, actually it’s a little bit different. I think the tape we’re referring to is a little different than athletic tape. It’s called Kinesio tape, and it’s been around since the 70s actually, and it is something that has been shown to help with musculoskeletal types of pain, so it could be worth exploring. If this is the same question I’m thinking of, this individual complains of the pain that radiates around the bottom of the ribs.

Andrew Schorr:
Correct.

Melanie House:
That sounds like it’s probably one of the intercostal nerves that could have some compression on it perhaps due to where the vertebrae has lost its height and therefore the rib is getting compressed and maybe pressing on a nerve. So yes, there’s some potential there. If there could be some lift appreciated on one of the ribs or just to create a little more space there.

The other thing that I thought about is when we’re laying flat‑‑I hear this all the time. I just had a patient today say to me, well, I was six‑foot‑three but not anymore, and this individual just had some back surgery done, fused his lumbar spine. And so I explained to him that it’s best if we put his back brace on when he’s laying down because that’s when the vertebrae are off‑loaded so your disks are at their maximal height, and if you can put a brace on laying down and put it on so it’s comfortable but snug, once you sit up you’ve done the supporting that you’ve needed to before everything tries to collapse.

Andrew Schorr:
Okay. Good points. Mike Furlow sending this question. He said he discovered myeloma when a plasmacytoma broke my humerus near my shoulder. My bone scan and CT scan showed no other significant lesions, but he later found significant damage to my right ankle during the surgery. So he’s wondering, is it safe to assume I have damage elsewhere? He just doesn’t know what to do. And so do I have to be particularly careful about bone injuries going forward. He’s worried. What do you say?

Melanie House:
Yeah. This sounds like a classic case where you know there’s got to be‑‑there could be some other problem in there but you can’t see it, you don’t know about it, so that fear creeps in, and that could paralyze somebody really from doing exercise that could be benefitting them.

So I would definitely recommend that he meet with his doctor or primary care provider who has access to his films, his recent scans, so like a whole‑body MRI or the PET scan, and go through, where are the lesions that I should be concerned about, and how would that guide my exercises or working with a physical therapist to come up with a safe program. Because if you don’t know where they are and you fear that there’s something electric there, I’m going to do the same thing. I’m going to think it’s safest to stay in my recliner probably.

Andrew Schorr:
Okay. So Jim mentioned a couple‑‑he mentioned a lot of significant things a minute ago, but he was saying that he knows given his bone complications there’s certain things that he’s going to avoid. He lives in Cleveland. In the winter he’s going to be real careful about ice. And if his wife says, gee, can you change a light bulb up there and it means going up on the step ladder, he’s not doing it. Okay?

Melanie House:
(?) And she probably wouldn’t ask.

Andrew Schorr:
She won’t ask, right. So the point is what about changing sort of activities in daily living so you can be active but be safe?

Melanie House:
Well, the first thing that comes to mind, and this is again going back to where I am most concerned for my myeloma patients, and that is the vertebral fractures because I‑‑it’s just‑‑it’s so sad to me when I see folks losing, progressively losing their height knowing it’s because these vertebrae are literally collapsing, and the biggest force that causes the collapse is flexion.

So when you think about in your daily life how often do you have to flex. Oh, I have to bend over to put my shoe on, I’m pulling my sock up. Oh, I dropped the paper, or maybe I’m picking something up off the floor that normally sits there like the food bowl for my cat. And so these motions can result in significant pressure forces going down the front of the vertebrae that actually lead to their collapse.

So one way that a person can change the way they’re moving throughout the day is hamstring stretching is a good start because the longer your hamstrings are the less you have to flex through your lumbar spine. But for others it’s beneficial to even use adaptive equipment. Like our occupational therapist will train people on how to use something called a reacher, and that just allows you to be able to bend over safely but not bend too far and still pick an item up so you’re at less risk of losing your balance and falling but also less risk of causing those flexion compression fractures of the spine.

Andrew Schorr:
Well, so you’re saying don’t bend down for the cat’s bowl. Maybe there’s some grabber or something will help you do it?

Melanie House:
Well, in that case‑‑I mean, there’s different ways to approach it. If you can squat rather than bend. The thing is that we all have our habits, and we don’t even realize what we’re doing until we see a video of ourselves or someone points it out. But if you know you’re at risk for compression fractures in your spine, going through some training to actually learn what ways could I move differently, what strategies could I use that are safe and still let me do the things I need to do, there’s always a way to accomplish it. It’s just that it’s very individualized for each person.

Andrew Schorr:
Okay. Remember, send in your questions to myeloma@patientpower.info.

Here’s another one again for you, Melanie, from Paula. Any thoughts on interval training or other techniques to help my body use oxygen more efficiently? So interval training, that would be like running for two minutes and then walking and running or longer. If you kind of start, stop, right?

Melanie House:
Yes. And interval training, I use interval training for patients in the hospital who can only walk 10 or 15 feet and have to sit and rest. We can call that interval training. Or, like you just said, it could be something like being on a bike or walking or jogging where you’re just doing that higher intensity and then you do the lower intensity.

So for each individual you have to find that right combination of exercise that’s still safe for you, but the first thing that I would think of in this question is again back to, okay, what are your lab values? If you’re hemoglobin is low, if you happen to be anemic, then you really do have to listen to your body. If you’re feeling short of breath, you should not be pushing through that.

So, yes, interval training would actually help you to build your endurance and your total distance that you could walk, and that to me suggests that you’re listening to your body and you’re slowing down when your body is telling you need to.

Andrew Schorr:
Okay. Alexa, lab values are not just about hemoglobin, but they’re also about creatinine. Jim was talking about kidneys. Certainly patients are at risk for kidney problems. My doctor says every time I see him, Andrew, drink more water, drink more water, drink more water. Jim was talking about that too. And also looking at whether we’re getting enough of different minerals as well. So that can show up in our lab values too. We should be aware of those, right?

Alexa Welch
Absolutely. Your doctor can test you for any vitamin deficiencies as well. Yep, your labs are very telling for, you know, if you’re hydrating properly, if you’re well nourished. But yeah, so definitely I think you’re doing the right thing staying hydrated and making sure you’re getting enough liquids. That’s definitely the best thing, one of the best thing for your kidneys.

Andrew Schorr:
There you go. I’m going to drink some more in a second. But I‑‑so, Alexa, and this is for you, Melanie, as well, but first you, Alexa. So what do we do? So you all are at the big university medical center, but even at clinics they often have a dieticians. Increasingly now some of the larger clinics have a physical therapist or maybe consulting one nearby.

Should we consult with you, not just if we’re having a transplant but we’re there for a clinic visit? Can we say, I’d like to see the dietician? I’d like to see the physical therapist because I want to be strong, I want to exercise, I want to eat right. I mean, that’s something we can request, correct?

Alexa Welch
Absolutely. I know here we have a dietician who works out patients specifically just for our cancer patients who are here for clinic visits. Usually her schedule is pretty flexible, and she is able to add patients on same day. So obviously I don’t know how it works everywhere, but every patient should be an advocate for themselves and how they want their treatment to go. So if they’re losing weight and they know they’re not supposed to, then you meet with the dietician and see what they can do differently for calorie boosting, for protein boosting, and same thing I’m assuming with physical therapy as well. You need to be an advocate for yourself. Ask for those consultations if you’re not offered them.

Andrew Schorr:
Melanie, you’d say that?

Melanie House:
Yes. I would agree. And the other thing is actually for physical therapy in most states it is a direct access option for you so you don’t often‑‑depends on what state you live in, but you don’t always have to have a doctor’s referral to be seen by a physical therapist.

That said, you’ve heard me say over and over, if I’m recommending that you see a physical therapist I want that therapist to actually be well informed of your past medical history, any of your lab values, any of your films and your imaging. So some facilities will still request PT counsel just so they have that physician connection and can get all those types of things that they need to know.

Andrew Schorr:
Right. Right. So, again, wherever you may be in the sound of my voice, if you will, all physical therapists are not equal. Melanie is an oncology physical therapist now, and she’s going to understand the risks you have in myeloma. We talked about bone, balance, the lab values, etc., maybe even complications from treatment you’ve had or medicines you’re taking. So somebody needs to see the whole picture. Same with a dietician, right?

Alexa Welch
Yes.

Andrew Schorr:
So trying to see people get the whole picture is important. You’re not going to have that at the health food store. You probably won’t have that at the pharmacy. You need to seek out somebody who’s knowledgeable about this.

So, Jim, a little bit about cancer patient consumerisms. You’ve had to really speak up for yourself. First of all, play a role in your care and speak up for yourself so you get the care you need and deserve. What you would you say to our listeners today so that when you think about diet, exercise, and going on with their life, which many people, and you’re a great example, now with myeloma can, what would you say to them so that they advocate for themselves to get consultants like these on their team?

Jim Bond:
Everybody’s different, and I believe everybody should handle their case the way they’re comfortable. Here’s what my wife and I are very comfortable with. I want to be an equal partner with my medical team. I don’t want to be the boss, and I don’t want to be bossed around. I want to have an equal vote.

And a good example of that is at about the 10‑year mark I was told here in my home town, Jim, you’re done with any treatments available. So you have to go to a hospice. You’re all done. And I said, no, I’m not going to a hospice. I said‑‑and that made the doctor leave the room, angered, but before he left I was able to say I know of a clinical trial that I had gotten word of in an out‑of‑town second opinion in those 10 years, and I said, I’m going to try to get in that clinical trial. And he told me I was wasting my time. I got in it. I was lucky enough to get in it anyhow. Had the leave town.

And I think that’s one of the great examples of being an equal partner. Okay? The doctor had certain advice, and it’s happened before in the 26 years. But I spoke up with my wife’s support, and I said, look, what if we tried it this way? What if we tried that three‑drug mix but without the steroid because I don’t really like to take steroids once I learned it caused one hip to have to get replaced. And the doc says, you know, I’m really not that keen on that, Jim, but I’ll go along with you if you want to run the risk. I said, yeah, I really do, and if it doesn’t work, if the numbers go up, we can always add the steroid later. And, you know, two months later the very popular myeloma doctor called me back and said, Jim, good call on your part. It worked fine without the steroids.

So advocate for yourself. Don’t be afraid to get educated. There’s lots out there. But if you don’t want to that’s okay too. If your way of handling it is different than that, I believe that’s‑‑your way is right for you.

One thing I’d add to the stretching and the back stuff. I’ve got severely curved spine. I’ve lost at least three inches of height, and I’m sure I’m at risk for something back there. But they don’t tell me, Jim, don’t bend or don’t do this. Well, I do stretch my hamstrings daily. That’s very important to me. And what I’ve learned to avoid is lift‑‑I don’t lift heavy objects. So how do you go along with your life? Well, you figure out ways. You know, it’s great that we have luggage that has those rollers on them. I have a briefcase that has rollers on it because I feel the pain. If I lift I’ll feel the pain the next day. So I stay away from lifting.

But, no, I just go ahead and do things. And I try to ask the doctors and nurses, tell me what I should not do, and I listen real carefully and being an equal partner I got to weigh all that, and I let them know where we’re coming out on things. But it’s fine to advocate for yourself and the longer each of you live with myeloma the more you’re going to realize, hey, there’s a lot of flexibility here. No one’s got the answer or we’d have a cure. So there is some flexibility, but you’ve got to use your good judgment and that of your medical team.

Andrew Schorr:
Great advice. So, Melanie, what do you want to leave people with on the importance of exercise wherever you are in your myeloma journey and having the right consultation so you can do what’s wise and what’s safe?

Melanie House:
The most important thing I can say is there’s no better time to start than now, and finding those things‑‑you know, think about what is it that’s important to me? What am I missing out on in my life that I want to get back to, and consult a professional to help them‑‑they will help you achieve those goals to get back to doing those things as best and as safely as possible.

Andrew Schorr:
I’d agree. You know, I have to get immunoglobulin treatment once a month for my‑‑related to my leukemia. Some other people may get that too. And yet in those times like now, in between, I travel. And, you know, so I’m going on with my life and thank god have energy and can do those steps I talked about. So I would urge you to go live your life. And your healthcare team will help you. You can do this exercise or that. And there’s Jim who’s not going to get up on the step stool, but he’s going to do that 328‑mile bike ride for the 12th time. Okay.

So, Alexa, a final comment from you about what you’d say to people about proper nutrition wherever they are in their myeloma journey. What would you say to them?

Alexa Welch
I would say listen to your body. If your body is telling you I’m hungry, eat. If your body is telling you I’m not hungry, maybe not eat but also recognizing that if that’s all day long that you’re not hungry maybe you need to set an alarm on your phone to make sure you’re eating properly. Wherever you’re at in your journey it’s important to listen to your body until your body can’t tell you what it needs anymore, and then after that then you need to start kind of taking over‑‑your mind has to take over and listen to what you need.

Maintaining your weight. And then, like I said, whenever you can eat from all the food groups, and then in the meantime when your struggling to maintain your weight or eat enough overall you want to use those supplements when necessary while talking to your medical team. And supplements I mean by the high‑calorie, high‑protein shakes, not necessarily the herbal supplements.

Andrew Schorr:
All right. Great information. And one great thing I take away from you too is should I need a transplant some day or I’m going through chemo again a chocolate milkshake is okay.

Alexa Welsh:
Yes, absolutely.

Andrew Schorr:
All right I won’t feel guilty about the ones I’ve had in the past. So, Jim, we’re going to leave it with you. So you have this bike ride coming up, the 12th one, for fund‑raising for the American Cancer Society that you wife started in Ohio, god speed to you, Jim. Are you feeling pretty good?

Jim Bond:
I am. I am. I had to shake off a bout of pneumonia a month ago, but I got the clearance to get back on my bike about three or four weeks ago. And they said, take it easy, and if you get tired, you know, get off your bike‑‑and I will‑‑and, you know, I’ve proven I can do it, but, you know. I think we have to all use our common sense on this stuff and live your life like you said. And we can do it. We can be long‑term survivors.

Andrew Schorr:
All right. Well, all the best to you. We are all riding with you, Jim Bond, okay?

Jim Bond:
Thank you.

Andrew Schorr:
All the best. Well, I want to thank Jim joining us from Cleveland getting ready for the bike ride in a couple days. Alexa Welsh joining us from the University of Iowa Hospitals in Iowa City, thank you so much, Alexa. And also Melanie House, joining us once again also from the University of Iowa Hospitals. Great information. Thank you so much.

I want to thank the Patient Empowerment Network for letting these programs flow and what a wonderful service it does to our myeloma community. And I want to thank the companies that have helped fund this program, AbbVie, Takeda and Celgene, thank you for being supporters of the myeloma community.

Remember, there’s a replay that will be available to you soon. Share it with others you know in the community. There will be video clips and sound clips with Jim that will be coming up. There will be a transcript, all coming your way. And discuss it and make sure that you connect with not only other people in the community but people like Alexa and Melanie who are very specialized, who can help you have the right diet and the right exercise for you.

In Quebec City, Canada, I’m Andrew Schorr. Thanks for joining us. Remember, knowledge can be the best medicine of all.


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

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