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Is Myeloma Hereditary? The Facts.

Is Myeloma Hereditary? The Facts. from Patient Empowerment Network on Vimeo.

 Can myeloma be inherited? Dr. Irene Ghobrial, a myeloma expert and researcher, explains whether myeloma is hereditary.

Dr. Irene Ghobrial is Director of the Clinical Investigator Research Program at Dana-Farber Cancer Institute and Professor of Medicine at Harvard Medical School. Dr. Ghobrial specializes in multiple myeloma (MM) and Waldenström macroglobulinemia (WM), focusing on the precursor conditions of monoclonal gammopathy of undetermined significance (MGUS) and smoldering myeloma. More about this expert here.

See More From Fact of Fiction? Myeloma

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Transcript:

Patricia:

How about this one? “Myeloma is hereditary.”

Dr. Ghobrial:

It’s a very good question. So, it’s not hereditary specifically. However, there is a 2x increased risk in family members, and that goes back to that PROMISE study.

We are screening people who have first-degree relatives with myeloma. So, what does it mean? Why do I have a higher risk if I have a family member with myeloma? I recently saw a patient who – the patient had myeloma, the mother had myeloma, and the grandmother had myeloma, and you’re thinking, “Okay, there is something we’re inheriting.”

So, we don’t know. There are some susceptibility genes that we could potentially be inheriting, germ line, and we’ve done something called “germ line,” which means you have it from Mom and Dad, that can increase your risk. It could be other factors come in and we’re still trying to understand all of these factors. What are the genes that can increase your risk? Is there an immune factor that can increase your risk, and can we identify those early in the family members?

The Truth About MGUS

The Truth About MGUS from Patient Empowerment Network on Vimeo.

Is MGUS the same as smoldering myeloma? Myeloma expert, Dr. Irene Ghobrial, provides a detailed overview of MGUS, including the risk of progression.

Dr. Irene Ghobrial is Director of the Clinical Investigator Research Program at Dana-Farber Cancer Institute and Professor of Medicine at Harvard Medical School. Dr. Ghobrial specializes in multiple myeloma (MM) and Waldenström macroglobulinemia (WM), focusing on the precursor conditions of monoclonal gammopathy of undetermined significance (MGUS) and smoldering myeloma. More about this expert here.

See More From Fact of Fiction? Myeloma

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Why Should Myeloma Patients Visit the Dentist Frequently?

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Transcript:

Patricia:

What about this one? “An MGUS diagnosis will lead to myeloma.”

Dr. Ghobrial:

Great question. So, let’s talk about MGUS in general. In the general population, once you’re over the age of 50, there’s a three percent change of having MGUS incidentally found, and that’s known from the big studies from Dr. Robert Kyle. Any of us walking around probably may have MGUS, and we don’t know.

We started recently a big study called the PROMISE study where we actually screen for the first time to look for myeloma – or, for MGUS – and the reason for that is we said, “You go screening for mammography with breast cancer, you go screening with a colonoscopy for colon cancer; we don’t screen for myeloma, which is an easy blood cancer with a blood test. Let’s screen for it.” So, that’s available online – promisestudy.org.

The other thing that we said is if you have MGUS, your chance of progression is only one percent per year. That’s very important to know. So, that means that in 10 years, you have a 10% chance of progression to myeloma. In 20 years, you have a 20% chance. So, if you’re 70 or 80, you may have something else that happens before you even develop myeloma or before you are at risk of myeloma.

However, that doesn’t mean that you don’t have the chance. You have a very small chance; it’s a precursor to myeloma, but it’s one of the biggest precursors to myeloma, so we always tell you, “Please go see your doctor, please do follow up with us because the one thing that’s important is we catch it early before it happens.” So, it does not always go to myeloma, but if we live for another 100 years, it may actually progress to myeloma because of the 1% chance per year.

Patricia:

How about this one? “MGUS and smoldering myeloma are the same.”

Dr. Ghobrial:

That’s not true. That’s a very important question. So, in general, MGUS is diagnosed as having less than 10% plasma cells and a small monoclonal protein, less than 3 grams, and you don’t have any organ damage.

Smoldering myeloma – and, the name says it; it’s almost myeloma, it has a higher chance of progressing to myeloma – in general, it’s about 10% per year, and usually, the bone marrow has more than 10% plasma cells. Now, you start telling me as a patient, “Well, if my bone marrow is nine percent, I’m MGUS, and if it’s 11%, I’m smoldering myeloma, that doesn’t make sense.” So, it’s correct. In general, those demarcations or numbers are more for us as physicians to talk to each other about what we’re calling rather than the patient themselves. The patient is a continuum.

So, you may move from MGUS to smoldering at a certain point, and it’s not really that extra percentage of bone marrow that moves you into the 10% risk. In general, again, smoldering myeloma, you have a higher chance of going to myeloma. So, I saw a patient recently who’s 30 who has smoldering myeloma. The chances of progressing to myeloma is 10% per year. In five years, you have a 50% chance.

You want to make sure that patient is followed up carefully, and you want to offer, potentially, clinical trials because we want to prevent progression. The hope in the future is you don’t want until you have lytic lesions, fractures in your bones, kidney failure, and then we treat. The hope is we treat you earlier and we can make a huge difference in that early intersection for myeloma.

Patricia:

It sounds like staying engaged with your care team is critical.

Dr. Ghobrial:

Absolutely, and I would say myeloma is a specialty field. Come and see a myeloma expert, wherever it is, even for a one-time consult, because it’s really complicated and it’s not a common disease, so it’s not something easy for everyone to know what to do with MGUS, what to do with smoldering, what to do with overt myeloma. I relax for the first time. All of these things are important, and just like you go and see the best specialist in anything, I would say care about your myeloma in a very specific way, ask your doctor questions, go online and look it up, and always ask an expert if you want to have a second opinion.

Why Should Myeloma Patients Visit the Dentist Frequently?

Why Should Myeloma Patients Visit the Dentist Frequently? from Patient Empowerment Network on Vimeo.

 Dr. Irene Ghobrial, a renowned myeloma specialist, explains why myeloma patients should be more vigilant about visiting the dentist.

Dr. Irene Ghobrial is Director of the Clinical Investigator Research Program at Dana-Farber Cancer Institute and Professor of Medicine at Harvard Medical School. Dr. Ghobrial specializes in multiple myeloma (MM) and Waldenström macroglobulinemia (WM), focusing on the precursor conditions of monoclonal gammopathy of undetermined significance (MGUS) and smoldering myeloma. More about this expert here.

See More From Fact of Fiction? Myeloma

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Transcript:

Patricia:

Dr. Ghobrial, let’s talk about some of the things that patients are concerned about when they come in about treatment side effects, and maybe some of those things aren’t true. Myeloma patients should visit the dentist more frequently.”

Dr. Ghobrial:

So, there is something about the bisphosphonates that we give patients, and they can cause – in a very rare number of patients – something called osteonecrosis of the jaw.

In the old days, when we didn’t know about that side effect, people would go get a root canal, come back, and have a big problem of osteonecrosis of the jaw with severe pain, and it doesn’t recover.

So, we’ve learned our lesson. We know very well that we hold Zometa or zoledronic acid if they’re getting any procedures. We make sure they don’t get surgical procedures – it doesn’t mean don’t get dental cleaning, please do the usual things for dental health, but don’t go into surgical procedures when you’re getting zoledronic acid – and we’re very careful with that.

We talk to our patients. Most dentists know about it, so I think this is something that in the old days, it was a problem. Now, we know how to medicate that.

The Truth About Myeloma Treatment Side Effects

The Truth About Myeloma Treatment Side Effects from Patient Empowerment Network on Vimeo.

 Managing myeloma treatment side effects can be overwhelming. Dr. Irene Ghobrial reviews common side effects and shares how life can go on, even while undergoing treatment for myeloma. Download the Program Resource Guide, here

Dr. Irene Ghobrial is Director of the Clinical Investigator Research Program at Dana-Farber Cancer Institute and Professor of Medicine at Harvard Medical School. Dr. Ghobrial specializes in multiple myeloma (MM) and Waldenström macroglobulinemia (WM), focusing on the precursor conditions of monoclonal gammopathy of undetermined significance (MGUS) and smoldering myeloma. More about this expert here.

See More From Fact of Fiction? Myeloma

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Why Should Myeloma Patients Visit the Dentist Frequently?

Myeloma Treatment Options: What’s Available?

Hesitant to Join a Support Group? Encouraging Advice From an Advocate

Transcript:

Patricia:                      

What are the common myeloma misconceptions about treatment side effects?

Dr. Ghobrial:              

I think the biggest thing is the loss of hair, the nausea, and fatigue, and to the point that I cannot travel, I cannot see my family, I’m gonna be so immunosuppressed. And again, that’s a huge misconception. Yes, there is toxicity for every drug. Even if you take aspirin, you have toxicity from it.

But, every drug has risks and benefits, and currently, the combinations we have are just impressive that they are well tolerated in general. I’m not saying there is no side effect – there is, for every different class of agents, there are, and you will go through those side effects with your doctor in detail – but in general, yes, you’re slightly immunosuppressed, you have to take care of it, and I said it yesterday to one of my patients – if someone is looking very sick in front of you, don’t go and hug them.

Christmas is around the corner, and we want to make sure people celebrate and enjoy life and enjoy the holidays with their family members.

Patricia:                      

Dr. Ghobrial, let’s talk about some of the things that patients are concerned about when they come in about treatment side effects, and maybe some of those things aren’t true. You tell me. Treatment side effects are unavoidable – we already talked a little bit about that. How about this one? “Myeloma patients should visit the dentist more frequently.”

Dr. Ghobrial:              

So, there is something about the bisphosphonates that we give patients, and they can cause – in a very rare number of patients – something called osteonecrosis of the jaw.

In the old days, when we didn’t know about that side effect, people would go get a root canal, come back, and have a big problem of osteonecrosis of the jaw with severe pain, and it doesn’t recover.

So, we’ve learned our lesson. We know very well that we hold Zometa or zoledronic acid if they’re getting any procedures. We make sure they don’t get surgical procedures – it doesn’t mean don’t get dental cleaning, please do the usual things for dental health, but don’t go into surgical procedures when you’re getting zoledronic acid – and we’re very careful with that.

We talk to our patients. Most dentists know about it, so I think this is something that in the old days, it was a problem. Now, we know how to medicate that.

Patricia:                      

Sure. How about this one? “Treatment causes increased risk for blood clots.”

Dr. Ghobrial:              

So, a couple of the drugs that we have – especially immunomodulators – can increase your risk for DVTs, blood clots, or pulmonary embolism, PE. So, the first thing we say is, “Let’s assess your baseline risk.

Are you someone who is at risk of clotting anyways?” Remember, myeloma also increases your risk of clotting, so you’re double. So, if you are at a high risk of clotting, then we would give the full anticoagulation. If you are not, then we would say aspirin is good enough to control that inflammation and endothelial damage that happens early on with therapy, and that can take care of it.

Patricia:                      

How about this one? “Side effects can be managed by diet and lifestyle.”

Dr. Ghobrial:              

So, I am a big believer that exercise and good, healthy living helps you in general. It makes your mood better, it makes you feel stronger, it gives you that energy because of the fatigue from the side effects, it helps with the dexamethasone because dex is a steroid, so you’re gonna be hungry, you’re gonna be eating more, and the on-and-off makes you fatigued and tired.

So, absolutely, diet and good healthy living – I’m not saying you have to go into extreme starvation and things like that. We say in general, be good, healthy living; exercise if you can.

Patricia:                      

What do you hear from your patients about side effects and treatments that they may think is true?

Dr. Ghobrial:              

I think neuropathy is very important, and we underestimate the neuropathy, so if you have numbness or tingling, tell your doctor.

That comes from Velcade; it comes from thalidomide when we used to use thalidomide, but it can happen in many patients who have an underlying amyloidosis and we did not diagnose it yet, or it can just happen as you go on from myeloma, rarely. So, tell your doctor about this.

I think the fatigue is very important to know about it because people suddenly change their life, and they want to know about that. I think the rashes that can happen with many of the drugs are very important to know about so that you’re not surprised when you get the rash. We know, for example, Revlimid can cause itching of the scalp, and that’s something that if we don’t tell the patients and they start going like this, then there is a problem.

So, it’s small things, but we want to let them know. We usually tell the patients everything, to a point of just going through all the side effects. It’s better to be aware of it, and then, if you get or not, at least you were aware.

Patricia:                      

Sure. How does one distinguish treatment side effects from comorbidities like fatigue?

Dr. Ghobrial:              

I think that’s important, and again, talking to your doctor is very important. Keeping a diary on the side is very important because you may have had some of those problems, and that could be from myeloma before you even started the drugs, and making sure that we know what’s from myeloma, what’s from your thyroid issue, what’s from your lung problems if you have asthma or COPD, what’s your diabetes if you have that or your other medications, from what are you doing with those medications.

I think that’s why when you start therapy, we tell you, “Try not to take too many other medications that we don’t know about, herbal medicines and other things, because then we don’t know what are the side effects and what’s causing what.”

Patricia:                      

Sure. You mentioned neuropathy. Let’s talk a little bit about what that is.

Dr. Ghobrial:              

So, neuropathy can come in different ways, but the most common one is numbness and tingling that you have in your tips of toes and tips of your fingers, and that can happen from medications, as we said, or from the underlying myeloma or amyloidosis. It can be painful, and we’re careful that if you have this, tell your doctor because if it get worse and worse, it’s very hard for us to reverse neuropathy, so just always tell us because we can stop the drug, we can decrease the dose rather than having you go through it.

Addressing Clinical Trial Misconceptions: The Facts

Addressing Clinical Trial Misconceptions: The Facts. from Patient Empowerment Network on Vimeo.

Dr. Irene Ghobrial, a myeloma specialist and researcher, dispels common myths associated with clinical trials, including a review of each phase of the clinical trial process.

Dr. Irene Ghobrial is Director of the Clinical Investigator Research Program at Dana-Farber Cancer Institute and Professor of Medicine at Harvard Medical School. Dr. Ghobrial specializes in multiple myeloma (MM) and Waldenström macroglobulinemia (WM), focusing on the precursor conditions of monoclonal gammopathy of undetermined significance (MGUS) and smoldering myeloma. More about this expert here.

See More From Fact of Fiction? Myeloma

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Transcript:

Patricia:

Sure. What about clinical trials? What common misconceptions do you hear from patients enrolling in trials?

Dr. Ghobrial:

There’s a lot of misconceptions, and it’s unfortunate. I would say I would absolutely go on a trial if I can. I’m a believer in clinical trials because they’re the way forward to bring in new therapies and new options. I think a lot of people think that we’re experimenting on them when we’re doing clinical trials, meaning that it’s first in human, meaning it’s the first time we try this drug, and I would say that most of our clinical trials are not first in human.

They’re not the very first time we’ve tried them. Likely, those are drugs we’ve tried, we know the side effects, we know the toxicity, but it’s the first time we’ve put it in a different combination or it’s the first time we’ve put it in a specific subset of patients to look at response or at overall survival.

Most of the trials – so, before you decide “Oh, it’s a trial,” just think – is this a phase 1, a phase 2, or a phase 3? Phase 1 are usually that first time that we try in a population. Phase 2 are usually we know already what happens, we know the toxicity, we’re bringing it to look at the response rate in general or the survival, and then, phase 3s are the bigger studies, going to the FDA for approval.

The second thing is you want to think about is there a placebo arm in it. Most of my patients really worry about “Oh my God, you’re gonna give me the placebo,” and I’m like, “No, we don’t have a placebo arm in this trial. You’re taking the drug that we tell you about.” So again, depending on the trial – read it carefully – there may be a placebo arm, but in most of them, it’s not a placebo arm.

So, I would personally go ask the doctor every time, “So, you’re talking about standard of care. What else do you have? Do you have clinical trial options or not? What’s new?” Almost every single new drug that we’re gonna get approved in the next 5-10 years from now is what we have today in clinical trials. It would be cool to try and get access to those earlier.

Patricia:

So, there’s a significant amount of vetting that goes on before clinical trials are actually in process on humans.

Dr. Ghobrial:              

Oh, absolutely.

Myeloma Treatment Options: What’s Available?

Myeloma Treatment Options: What’s Available? from Patient Empowerment Network on Vimeo

Renowned myeloma researcher, Dr. Irene Ghobrial, provides an overview of current treatment options for myeloma, including an explanation of the now commonly used four-drug regimen.

Dr. Irene Ghobrial is Director of the Clinical Investigator Research Program at Dana-Farber Cancer Institute and Professor of Medicine at Harvard Medical School. Dr. Ghobrial specializes in multiple myeloma (MM) and Waldenström macroglobulinemia (WM), focusing on the precursor conditions of monoclonal gammopathy of undetermined significance (MGUS) and smoldering myeloma. More about this expert here.

See More From Fact of Fiction? Myeloma

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Transcript:

Patricia:

Let’s get an overview of available myeloma treatments.

Dr. Ghobrial:

Oh, boy. Okay, how long do we have here? It depends. The moment I see a patient – and again, maybe we can start with smoldering myeloma because that’s an area I’m really excited about.

If you have asymptomatic disease, it does not mean you have to watch and wait until you fall apart, until you have bone lesions, until you have anemia. We want to see those patients early because we have a lot of clinical trials, and potentially, the cure may actually be in an earlier precursor session when we treat you earlier before you have the disease.

But, the standard of care is when you have symptoms – anemia, hypercalcemia, lytic lesions, and renal failure, or other things like 60% plasma cells – we say you have active multiple myeloma, and in that case, we start saying, “Well, are you a transplant candidate or not?” In the old days, it used to be by age, but now, we say age is just a number, so it really depends on if you have good organ function, are you in an active good state, do you have good lungs, good heart, are you willing to take the transplant, because now, there’s a big discussion whether we should transplant patients or not.

And then, at the end of the day, we’re starting to actually blur that, saying that most of our treatments are almost identical, whether you are old or young, whether you’re a transplant candidate or not. It depends on frailty. Can you tolerate this treatment or not? Maybe a few years ago, we used to say a three-drug regimen is the best way to go.

Now, most of us are starting to say four-drug regimen up front is the way to go, which is an antibody – currently, it’s daratumumab – a proteasome inhibitor – it could be bortezomib or carfilzomib – an immunomodulator – likely, this is lenalidomide – and then, dexamethasone. That’s sort of the option that we have right now, at least in the U.S.

If you go to Europe, you’ll find us using different drugs, like thalidomide or other things, but most of us are thinking of a four-drug regimen to think of our up-front myeloma treatment to get you the best remission, eventually MRD-negative disease, and then we talk about transplant or no transplant, and then, of course, we talk about maintenance.

We want to keep everyone on maintenance therapy; the question is how long, which maintenance, do we use one drug or not? So, there is a lot to be discussed in treatment of myeloma, and that’s the beauty of it. It’s truly an art and science together. It’s not just “Here’s a combination because you have this treatment.” We really personalize therapy for you.

We look at your cytogenetics, your FISH. We say you have high-risk cytogenetics or not, you’re young or not, you have good organ function or not.

There are so many things that we put in consideration when we come up with a treatment plan for a patient.

Fact or Fiction? Myeloma Treatment & Side Effects

Fact or Fiction? Myeloma Treatment & Side Effects from Patient Empowerment Network on Vimeo.

When it comes to online myeloma information, how do you separate fact from fiction? Dr. Irene Ghobrial shares facts about current myeloma treatments, common side effects and emerging research. Download the Program Resource Guide, here

Dr. Irene Ghobrial is Director of the Clinical Investigator Research Program at Dana-Farber Cancer Institute and Professor of Medicine at Harvard Medical School. Dr. Ghobrial specializes in multiple myeloma (MM) and Waldenström macroglobulinemia (WM), focusing on the precursor conditions of monoclonal gammopathy of undetermined significance (MGUS) and smoldering myeloma. More about this expert here.

See More From Fact of Fiction? Myeloma

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Transcript:

Patricia:

Welcome to Fact or Fiction: Multiple Myeloma Treatment and Side Effects. Today, we’ll review common misconceptions about myeloma. I’m Patricia Murphy, your host for today’s program. Joining me is Dr. Irene Ghobrial. Dr. Ghobrial, why don’t you introduce yourself?

Dr. Ghobrial:

My name is Irene Ghobrial. I’m a professor of medicine at Dana-Farber Cancer Institute, Harvard Medical School.

Patricia:

Great, thanks so much. Before we get started, just a reminder: This program is not a substitute for medical advice, so please consult your care team before making any treatment decisions. Okay, Dr. Ghobrial, let’s get started.

Let’s talk about some of the things, first, that we hear from patients. You tell me whether or not this is fact or fiction. Here’s one: “There are a number of treatment options for myeloma.”

Dr. Ghobrial:

Fact. It’s amazing because I trained in the old days – and, this shows you how old I am – when we only had bad chemotherapy: Vincristine, Adriamycin, and dex. None of you would even know about it.

Then, we had had high-dose dexamethasone, and that was it, and then we had stem cell transplant, and that’s all we had until suddenly, we had thalidomide, lenalidomide, bortezomib, carfilzomib, ixazomib, and you think about it, we are now in an era where we have 15-20 new drugs, we have another 15-20 coming up, we have an amazing time to completely cure myeloma in the future, and that’s just an exciting time to see that happening in the last 15 years of our lifetime, when patients were living three years, when we had – I remember five percent complete remission rate.

Now, we expect that all of our patients should get into a deep remission into potentially MRD-negative disease, and that’s just the beauty of how myeloma has changed completely.

Patricia:

Well, you’ve already busted our second myth, I guess, that there is no cure for myeloma.

Dr. Ghobrial:

That’s correct. There is no cure for myeloma, but there is a long remission, and the question is if someone lives for 20, 25, 30 years without evidence of myeloma and they die from something else, it’s a step forward. I would love to see us say to a patient, “You are cured,” but until then, we’re getting longer and longer remissions.

Patricia:

How about this one? “Only blood relatives can be donors for bone marrow or stem cell transplant.”

Dr. Ghobrial:

That’s not correct at all. If we think about it, what is stem cell transplant? There are two types. There’s something called autologous stem cell transplant, meaning it’s from myself, so that means that I’m taking my own stem cells, and the whole idea of that autologous transplant is basically high-dose chemotherapy.

So let’s take your own cells before we give you that high-dose melphalan, give the chemo, and then give them back to you, so that you’re not with low blood counts for two weeks, four weeks, you’re only with low blood counts for a couple of weeks. So, that’s autologous transplant; that means I’m giving my own stem cells to myself.

Allogeneic stem cell transplant, which we rarely do now in myeloma, is from another person, and that could be from a relative, but also can be from unrelated donors if they are matching us, but that’s very few cases.

Patricia:

Let’s get an overview of available myeloma treatments.

Dr. Ghobrial:

Oh, boy. Okay, how long do we have here? It depends. The moment I see a patient – and again, maybe we can start with smoldering myeloma because that’s an area I’m really excited about.

If you have asymptomatic disease, it does not mean you have to watch and wait until you fall apart, until you have bone lesions, until you have anemia. We want to see those patients early because we have a lot of clinical trials, and potentially, the cure may actually be in an earlier precursor session when we treat you earlier before you have the disease.

But, the standard of care is when you have symptoms – anemia, hypercalcemia, lytic lesions, and renal failure, or other things like 60% plasma cells – we say you have active multiple myeloma, and in that case, we start saying, “Well, are you a transplant candidate or not?” In the old days, it used to be by age, but now, we say age is just a number, so it really depends on if you have good organ function, are you in an active good state, do you have good lungs, good heart, are you willing to take the transplant, because now, there’s a big discussion whether we should transplant patients or not.

And then, at the end of the day, we’re starting to actually blur that, saying that most of our treatments are almost identical, whether you are old or young, whether you’re a transplant candidate or not. It depends on frailty. Can you tolerate this treatment or not? Maybe a few years ago, we used to say a three-drug regimen is the best way to go.

Now, most of us are starting to say four-drug regimen up front is the way to go, which is an antibody – currently, it’s daratumumab – a proteasome inhibitor – it could be bortezomib or carfilzomib – an immunomodulator – likely, this is lenalidomide – and then, dexamethasone. That’s sort of the option that we have right now, at least in the U.S.

If you go to Europe, you’ll find us using different drugs, like thalidomide or other things, but most of us are thinking of a four-drug regimen to think of our up-front myeloma treatment to get you the best remission, eventually MRD-negative disease, and then we talk about transplant or no transplant, and then, of course, we talk about maintenance.

We want to keep everyone on maintenance therapy; the question is how long, which maintenance, do we use one drug or not? So, there is a lot to be discussed in treatment of myeloma, and that’s the beauty of it. It’s truly an art and science together. It’s not just “Here’s a combination because you have this treatment.” We really personalize therapy for you.

We look at your cytogenetics, your FISH. We say you have high-risk cytogenetics or not, you’re young or not, you have good organ function or not.

There are so many things that we put in consideration when we come up with a treatment plan for a patient.

Patricia:

We’ve been talking a little bit about what patients believe when they come in, some of the things they’re thinking about. What else do you hear from patients that you either have to correct or affirm when they come into your office?

Dr. Ghobrial:

A lot of things. I think the first thing is, of course, they say myeloma is fatal, and they’re so scared, and absolutely, I understand that, but the median survival has become so much better, so much longer. There is a lot of hope, enthusiasm, and excitement right now with the treatments we have. The second thing is most of our treatments are not your typical chemotherapy, so unlike breast cancer or other cancers where you lose your hair, you’re throwing up, you cannot work, you have to take time off, most of our drugs now, people are working full-time, they’re active, you don’t lose your hair, so probably, no one has to know unless you tell them.

And, I think that’s something important for a patient to think about. It’s their own personal life, and not having to interrupt that. I think that’s very unique. So, these are a couple things that, as they come in, that anxiety of “Oh my God, I have cancer,” and then, taking a deep breath and saying, “Now, how do I handle this situation?”

Patricia:

Sure. What about clinical trials? What common misconceptions do you hear from patients enrolling in trials?

Dr. Ghobrial:

There’s a lot of misconceptions, and it’s unfortunate. I would say I would absolutely go on a trial if I can. I’m a believer in clinical trials because they’re the way forward to bring in new therapies and new options. I think a lot of people think that we’re experimenting on them when we’re doing clinical trials, meaning that it’s first in human, meaning it’s the first time we try this drug, and I would say that most of our clinical trials are not first in human.

They’re not the very first time we’ve tried them. Likely, those are drugs we’ve tried, we know the side effects, we know the toxicity, but it’s the first time we’ve put it in a different combination or it’s the first time we’ve put it in a specific subset of patients to look at response or at overall survival.

Most of the trials – so, before you decide “Oh, it’s a trial,” just think – is this a phase 1, a phase 2, or a phase 3? Phase 1 are usually that first time that we try in a population. Phase 2 are usually we know already what happens, we know the toxicity, we’re bringing it to look at the response rate in general or the survival, and then, phase 3s are the bigger studies, going to the FDA for approval.

The second thing is you want to think about is there a placebo arm in it. Most of my patients really worry about “Oh my God, you’re gonna give me the placebo,” and I’m like, “No, we don’t have a placebo arm in this trial. You’re taking the drug that we tell you about.” So again, depending on the trial – read it carefully – there may be a placebo arm, but in most of them, it’s not a placebo arm.

So, I would personally go ask the doctor every time, “So, you’re talking about standard of care. What else do you have? Do you have clinical trial options or not? What’s new?” Almost every single new drug that we’re gonna get approved in the next 5-10 years from now is what we have today in clinical trials. It would be cool to try and get access to those earlier.

Patricia:

So, there’s a significant amount of vetting that goes on before clinical trials are actually in process on humans.

Dr. Ghobrial:              

Oh, absolutely.

Patricia:                      

What are the common myeloma misconceptions about treatment side effects?

Dr. Ghobrial:              

I think the biggest thing is the loss of hair, the nausea, and fatigue, and to the point that I cannot travel, I cannot see my family, I’m gonna be so immunosuppressed. And again, that’s a huge misconception. Yes, there is toxicity for every drug. Even if you take aspirin, you have toxicity from it.

But, every drug has risks and benefits, and currently, the combinations we have are just impressive that they are well tolerated in general. I’m not saying there is no side effect – there is, for every different class of agents, there are, and you will go through those side effects with your doctor in detail – but in general, yes, you’re slightly immunosuppressed, you have to take care of it, and I said it yesterday to one of my patients – if someone is looking very sick in front of you, don’t go and hug them.

Christmas is around the corner, and we want to make sure people celebrate and enjoy life and enjoy the holidays with their family members.

Patricia:                      

Dr. Ghobrial, let’s talk about some of the things that patients are concerned about when they come in about treatment side effects, and maybe some of those things aren’t true. You tell me. Treatment side effects are unavoidable – we already talked a little bit about that. How about this one? “Myeloma patients should visit the dentist more frequently.”

Dr. Ghobrial:              

So, there is something about the bisphosphonates that we give patients, and they can cause – in a very rare number of patients – something called osteonecrosis of the jaw.

In the old days, when we didn’t know about that side effect, people would go get a root canal, come back, and have a big problem of osteonecrosis of the jaw with severe pain, and it doesn’t recover.

So, we’ve learned our lesson. We know very well that we hold Zometa or zoledronic acid if they’re getting any procedures. We make sure they don’t get surgical procedures – it doesn’t mean don’t get dental cleaning, please do the usual things for dental health, but don’t go into surgical procedures when you’re getting zoledronic acid – and we’re very careful with that.

We talk to our patients. Most dentists know about it, so I think this is something that in the old days, it was a problem. Now, we know how to medicate that.

Patricia:                      

Sure. How about this one? “Treatment causes increased risk for blood clots.”

Dr. Ghobrial:              

So, a couple of the drugs that we have – especially immunomodulators – can increase your risk for DVTs, blood clots, or pulmonary embolism, PE. So, the first thing we say is, “Let’s assess your baseline risk.

Are you someone who is at risk of clotting anyways?” Remember, myeloma also increases your risk of clotting, so you’re double. So, if you are at a high risk of clotting, then we would give the full anticoagulation. If you are not, then we would say aspirin is good enough to control that inflammation and endothelial damage that happens early on with therapy, and that can take care of it.

Patricia:                      

How about this one? “Side effects can be managed by diet and lifestyle.”

Dr. Ghobrial:              

So, I am a big believer that exercise and good, healthy living helps you in general. It makes your mood better, it makes you feel stronger, it gives you that energy because of the fatigue from the side effects, it helps with the dexamethasone because dex is a steroid, so you’re gonna be hungry, you’re gonna be eating more, and the on-and-off makes you fatigued and tired.

So, absolutely, diet and good healthy living – I’m not saying you have to go into extreme starvation and things like that. We say in general, be good, healthy living; exercise if you can.

Patricia:                      

What do you hear from your patients about side effects and treatments that they may think is true?

Dr. Ghobrial:              

I think neuropathy is very important, and we underestimate the neuropathy, so if you have numbness or tingling, tell your doctor.

That comes from Velcade; it comes from thalidomide when we used to use thalidomide, but it can happen in many patients who have an underlying amyloidosis and we did not diagnose it yet, or it can just happen as you go on from myeloma, rarely. So, tell your doctor about this.

I think the fatigue is very important to know about it because people suddenly change their life, and they want to know about that. I think the rashes that can happen with many of the drugs are very important to know about so that you’re not surprised when you get the rash. We know, for example, Revlimid can cause itching of the scalp, and that’s something that if we don’t tell the patients and they start going like this, then there is a problem.

So, it’s small things, but we want to let them know. We usually tell the patients everything, to a point of just going through all the side effects. It’s better to be aware of it, and then, if you get or not, at least you were aware.

Patricia:                      

Sure. How does one distinguish treatment side effects from comorbidities like fatigue?

Dr. Ghobrial:              

I think that’s important, and again, talking to your doctor is very important. Keeping a diary on the side is very important because you may have had some of those problems, and that could be from myeloma before you even started the drugs, and making sure that we know what’s from myeloma, what’s from your thyroid issue, what’s from your lung problems if you have asthma or COPD, what’s your diabetes if you have that or your other medications, from what are you doing with those medications.

I think that’s why when you start therapy, we tell you, “Try not to take too many other medications that we don’t know about, herbal medicines and other things, because then we don’t know what are the side effects and what’s causing what.”

Patricia:                      

Sure. You mentioned neuropathy. Let’s talk a little bit about what that is.

Dr. Ghobrial:              

So, neuropathy can come in different ways, but the most common one is numbness and tingling that you have in your tips of toes and tips of your fingers, and that can happen from medications, as we said, or from the underlying myeloma or amyloidosis. It can be painful, and we’re careful that if you have this, tell your doctor because if it get worse and worse, it’s very hard for us to reverse neuropathy, so just always tell us because we can stop the drug, we can decrease the dose rather than having you go through it.

31:59

Patricia:                      

What about this one? “An MGUS diagnosis will lead to myeloma.”

Dr. Ghobrial:     

Great question. So, let’s talk about MGUS in general. In the general population, once you’re over the age of 50, there’s a three percent change of having MGUS incidentally found, and that’s known from the big studies from Dr. Robert Kyle. Any of us walking around probably may have MGUS, and we don’t know.

We started recently a big study called the PROMISE study where we actually screen for the first time to look for myeloma – or, for MGUS – and the reason for that is we said, “You go screening for mammography with breast cancer, you go screening with a colonoscopy for colon cancer; we don’t screen for myeloma, which is an easy blood cancer with a blood test. Let’s screen for it.” So, that’s available online – promisestudy.org.

The other thing that we said is if you have MGUS, your chance of progression is only one percent per year. That’s very important to know. So, that means that in 10 years, you have a 10% chance of progression to myeloma. In 20 years, you have a 20% chance. So, if you’re 70 or 80, you may have something else that happens before you even develop myeloma or before you are at risk of myeloma.

However, that doesn’t mean that you don’t have the chance. You have a very small chance; it’s a precursor to myeloma, but it’s one of the biggest precursors to myeloma, so we always tell you, “Please go see your doctor, please do follow up with us because the one thing that’s important is we catch it early before it happens.” So, it does not always go to myeloma, but if we live for another 100 years, it may actually progress to myeloma because of the 1% chance per year.

Patricia:                      

How about this one? “MGUS and smoldering myeloma are the same.”

Dr. Ghobrial:              

That’s not true. That’s a very important question. So, in general, MGUS is diagnosed as having less than 10% plasma cells and a small monoclonal protein, less than 3 grams, and you don’t have any organ damage.

Smoldering myeloma – and, the name says it; it’s almost myeloma, it has a higher chance of progressing to myeloma – in general, it’s about 10% per year, and usually, the bone marrow has more than 10% plasma cells. Now, you start telling me as a patient, “Well, if my bone marrow is nine percent, I’m MGUS, and if it’s 11%, I’m smoldering myeloma, that doesn’t make sense.” So, it’s correct. In general, those demarcations or numbers are more for us as physicians to talk to each other about what we’re calling rather than the patient themselves. The patient is a continuum.

So, you may move from MGUS to smoldering at a certain point, and it’s not really that extra percentage of bone marrow that moves you into the 10% risk. In general, again, smoldering myeloma, you have a higher chance of going to myeloma. So, I saw a patient recently who’s 30 who has smoldering myeloma. The chances of progressing to myeloma is 10% per year. In five years, you have a 50% chance.

You want to make sure that patient is followed up carefully, and you want to offer, potentially, clinical trials because we want to prevent progression. The hope in the future is you don’t want until you have lytic lesions, fractures in your bones, kidney failure, and then we treat. The hope is we treat you earlier and we can make a huge difference in that early intersection for myeloma.

Patricia:                      

It sounds like staying engaged with your care team is critical.

Dr. Ghobrial:              

Absolutely, and I would say myeloma is a specialty field. Come and see a myeloma expert, wherever it is, even for a one-time consult, because it’s really complicated and it’s not a common disease, so it’s not something easy for everyone to know what to do with MGUS, what to do with smoldering, what to do with overt myeloma. I relax for the first time. All of these things are important, and just like you go and see the best specialist in anything, I would say care about your myeloma in a very specific way, ask your doctor questions, go online and look it up, and always ask an expert if you want to have a second opinion.

Patricia:                      

Sure. How about this one? “Myeloma is hereditary.”

Dr. Ghobrial:              

It’s a very good question. So, it’s not hereditary specifically. However, there is a 2x increased risk in family members, and that goes back to that PROMISE study.

We are screening people who have first-degree relatives with myeloma. So, what does it mean? Why do I have a higher risk if I have a family member with myeloma? I recently saw a patient who – the patient had myeloma, the mother had myeloma, and the grandmother had myeloma, and you’re thinking, “Okay, there is something we’re inheriting.”

So, we don’t know. There are some susceptibility genes that we could potentially be inheriting, germ line, and we’ve done something called “germ line,” which means you have it from Mom and Dad, that can increase your risk. It could be other factors come in and we’re still trying to understand all of these factors. What are the genes that can increase your risk? Is there an immune factor that can increase your risk, and can we identify those early in the family members?

Patricia:                      

What about preventing progression from smoldering? Is there anything patients can do?

Dr. Ghobrial:              

I would say enroll on the PCROWD. Study PCROWD is empowering patients themselves to go online. You can look it up – PCrowd with Dana-Farber – so, precursor crowdsourcing.

This is a study where anyone who has MGUS or smoldering myeloma can tell us about their data – so, their clinical information – tell us about their samples – so, give us their samples whenever they’re going to get their peripheral blood or their bone marrow – and by doing that, we can look at 1,000-3,000 people, put it all together, and hopefully give you very soon the answer of what causes progression, what are the specific markers genomically and immune that can predict progression, and can we target them?

Can we develop therapy for you specifically as a smoldering patient and not use the same drugs as myeloma, but target it for one specific patient for one specific operation?

Patricia:                      

When patients come into your office, they’re learning a lot of new things. Are there terms that are confusing to patients that you need to define for them?

Dr. Ghobrial:              

Absolutely. I think a lot of those terms are very hard. The words “complete remission” – was that a cure or not? It’s not.

We decrease all of your M spike, we decrease your plasma cells to zero, but it doesn’t mean that we’ve cured you. I think progression is very important. We use certain numbers. A 25% increase in your M spike or a 0.5-gram increase – even monoclonal protein is important to understand, that that’s the antibody that your plasma cells are secreting.

So, absolutely, there are so many words that could be very daunting for any patient to go through all of this. I think having an advocate with you – don’t go on your own because there’s so much information you’re getting that first time. I personally think if patients are recording us or taking notes, that’s perfectly fine because you go back and think about it, and you want to make sure that the information is clear.

So, it’s a lot of information to take in, especially if you’re not in the medical field, and I would encourage patients to ask questions, take notes, think about it a lot.

Patricia:                      

Tell me what an M spike is.

Dr. Ghobrial:    

So, an M spike – a monoclonal spike – is the protein – the antibodies. So, plasma cells are actually antibody-secreting cells, so they secrete the antibody, it goes in the blood, and when you have a lot of it from the same type of cell, they’re monoclonal, so they’re all the same IgG kappa – IgG kappa because they came all from that same kind of plasma cells.

And, when we run a specific gel, called serum protein electrophoresis, all of those antibodies will run in one area, and they will do a spike instead of going into a bigger area, where we call it polyclonal. So, that tiny little spike, which is a very high level of all of them coming together, we can measure it, and we can say, “Your monoclonal spike is 3 grams per deciliter.” If you don’t have all of them the same type of protein, they will just go around in one big area – big lump, basically, on that electrophoresis, and they will not come out as a spike. So, that’s monoclonal spike. 40:44

Patricia:                      

And, what are some reliable source of information for myeloma? The world wide web is vast.

Dr. Ghobrial:              

Yeah, and it’s unfortunate. So, there is so much information, and you can get lost, and you can also get misinformation. I think some of the big foundations are very important So, I would say the Multiple Myeloma Research Foundation, the International Myeloma Foundation, the Leukemia and Lymphoma Society, and of course, if you go to clinicaltrials.gov, you will find that information, and you’ll find a lot of the clinical trials. But again, ask your doctor. Ask the experts.

Patricia:

There are a lot of online forums – again, we talked about how vast the internet is. How can a patient identify misinformation online? What are some clues?

Dr. Ghobrial:              

That’s a hard one. I would say again, print it and take it to your doctor. Tell him, “Does that make sense? I’ve read this.” This is where you really need to do your research and go to the sites that you have confidence in so that you’re not lost in the middle of so much misinformation.

Patricia:                      

Do you have patients come in and say things to you that you just have to say, “Whoa, that’s just not accurate”?

Dr. Ghobrial:              

Yeah, but again, this is part of the discussion. I personally think every question is a good question. Even if it sounds completely ridiculous, ask it. That’s why we’re here. We’re here to tell you, “This is right, this is wrong, this one I don’t know, I’m not so sure,” and that’s okay. It’s part of the discussion.

Patricia:                      

Before we finish up, let’s get your take on the future of myeloma. What are you seeing on the horizon?

Dr. Ghobrial:              

Oh, a lot, and I hope I live long enough to see all of the amazing things. I truly think that we will cure myeloma. I think we should treat patients early. That’s an absolute change.

I think immunotherapy is coming in, CAR-T, bispecific antibodies. We will harness our immune system to kill myeloma, and I think there’s so much to be done there. I think precision medicine is very important. The first study is from MMRF [Multiple Myeloma Research Foundation] coming out now, genotyping, asking the questions “Which mutations do you have?”, and then putting them into different buckets so you can understand which disease should be treated with which drug.

We always say we know there is different subtypes of myeloma, then we treat you the same way, so let’s stop doing that, let’s do precision medicine, let’s individualize treatment specifically for you. So, I think that’s another big thing. So, in the future, there will be so many options. The hope is truly we’ll cure myeloma, we diagnose it early, we screen for it, we diagnose it early, and we prevent it from even causing one lytic lesion for a patient. 41:52

Patricia:                      

Dr. Ghobrial, let’s end by talking about why you’re so hopeful about the future of myeloma.

Dr. Ghobrial:              

Well, again, I trained – and, I said that 15 years ago – at Mayo Clinic, where we only had few drugs, when the survival of myeloma was three to five years, when we saw patients having severe fractures and severe pain, and now, we look at it, and it’s only 15 years in our lifetime, and we look at it that myeloma is a completely different disease.

We can diagnose it early – in fact, we’re thinking of screening them early – we can make a huge difference in all of the comorbidities, but the most important thing is we have so many amazing drugs that we’re using together to get an amazing, complete remission, MRD-negative disease, and then, in the next 5-10 years, I think we will change, again, immunotherapy with CAR-T. We will have precision medicine and immunotherapy to completely change how we treat myeloma. So, I am extremely hopeful and extremely excited for our patients.

Patricia:                      

So, how do you talk to your patients about this hope? I would imagine that when they come in, they’re pretty terrified about what’s going on.

Dr. Ghobrial:              

Absolutely. Again, the first thing is you want to say, “Yes, you have a cancer,” and that shocks you. That is a big thing. It makes a big difference in a patient. “I have cancer now” is an important part that you have to acknowledge.

And then, you go to the next step, and now, let’s talk about treatment. Let’s talk about survival. Let’s not say, “I will not see my kids grow up.” These are not things – again, we cannot predict. We’re not gonna play God, and we can never predict if someone will respond or not, but we know from the data that we have so far that we have amazing remissions and long-term survivors. I have many of my patients that I transplanted 15 years ago still alive, doing well. Again, I cannot say that myeloma is cured, but we have a good remission rate currently.

Patricia:                      

Dr. Ghobrial, thank you so much for taking the time today.

Dr. Ghobrial:              

Absolutely. Thank you.

Patricia:                      

And, thanks to our partners. To learn more about myeloma and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Patricia Murphy.

An MPN Care Partner Shares Why He’s Optimistic About the Future

An MPN Care Partner Shares Why He’s Optimistic About the Future from Patient Empowerment Network on Vimeo.

Care partner Jeff Bushnell, husband of myelofibrosis (MF) patient advocate Summer Golden, explains why he’s hopeful about their future together. Jeff shares key resources that have helped him stay educated and maintain optimism.

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

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Transcript:

Jeff:

It’s important to educate yourself because the more you know the less fear can overcome you. And this particular disease – the research is happening so fast, and things are changing. In my estimation, they’ll find – right now, the only cure is a stem cell transplant. It’s normally not done for older people. That in itself is innately risky. I’m convinced, probably within the next five to seven years, there will be a cure for this disease that’s not a stem cell transplant.

The research is moving that quickly on it. And if you don’t follow the disease and the people that are working on it, the specialists, you’re gonna have a much greater chance of feeling powerless and getting overwhelmed by it. As Summer believes, attitude can have a huge, huge impact on how the course of your disease runs. And a doctor would tell you the same thing.

For me, it started with Patient Power. Patientpower.info, I believe is, what it is. They have a whole section for myeloproliferative neoplasms and myelofibrosis, and they’re short videos. And you get a chance to listen to the best doctors that are the head people in this, Dr. Mesa, Dr. V [Verstovsek], and Dr. Jamieson – all the people that are really the movers and shakers. They speak. And you also get a chance to hear other patient’s stories and how they’re dealing with it. And that will give you a much better idea of what you’re facing. And you can really understand things from there. And you can get your knowledge.

Fear comes from lack of knowledge. In my job as a pilot, I flew for 50 years. I very, very rarely was afraid because my knowledge was so great and was reinforced every year by continual training that I felt prepared to handle anything that might come across to me. Knowledge is really important. It will allay your fears dramatically.

When I started online and heard about people that had been journeying with this for 10 or 15 years, initially, I had thought – well, this is a year or two, and it’ll be the end. And then I realized, plenty of people have lived with this for a long, long time. And they had a journey, and they’re doing it successfully. And that gave me confidence.

The more people you can talk to about it, the more you can put your journey in perspective. And it’s really hard to put in perspective for this particular disease because it affects everybody vastly differently. Some cancers – the progression is very, very linear. Everybody kind of goes through the same thing. This one – it depends on the mutations you have in your blood and all kinds of things like that, and some people get really bad symptoms quickly.

Others, they don’t. But the more you know about how those things affect you, the more you know and can understand about what to expect. And the more people you talk to who have it, you can find out about their journeys. It helps put yours in perspective.

I’m optimistic because I really keep up to date on what’s going on. And I see the doctors that are in the forefront of this and the research that they’re putting in and the care they have for working on this disease and the knowledge they have, and I just am quite optimistic. And as I say, I’m following the medical developments extremely closely.

I went to the ASH Conference last year. And I’ve gone to another conference that our doctor spoke at. And I’m just kinda blown away by – I’m fascinated by the science.

My advice would be find out as much as you can about it and support each other in a way that works in your own marriage.

Summer and I approach life a little bit differently. And yet, one of the reasons we do so well together is we kinda have both ends of the spectrum covered. And I sensed that when I met her 20 years ago. And we brought something to the table that each of us needed. And if you can find that in your relationship with your significant other that has the disease, what you can bring to it, what they can bring to it, you can be a tremendous support for each other.

A Care Partner’s Journey: How Life Goes on After an MPN Diagnosis

A Care Partner’s Journey: How Life Goes on After an MPN Diagnosis from Patient Empowerment Network on Vimeo.

Care partner Jeff Bushnell shares how he and his wife, patient advocate Summer Golden, have dealt with her myelofibrosis (MF) diagnosis. Jeff explains how online support and finding an MPN specialist were essential steps in helping them continue to live life to the fullest.

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

 

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Transcript:

Jeff:

The worst part was initially. We didn’t get a myelofibrosis diagnosis.

It took about a month because in order to definitively diagnose it they have to take a bone marrow sample and send it to a pathologist and so on and so forth. So, all that time, I’m worrying about the possibilities. It could be leukemia or this, that, or the other thing. My way of handling and dealing with scariness – I’m a retired pilot – is to find out things, knowledge.

I spent a huge amount of time on the internet. The LLS Society has papers about it, and I read those.

And the more I got into it – once we found out it was myelofibrosis, I’ve read almost all of the papers that the doctors write for each other to find about this. That doesn’t interest Summer in the slightest. It interests me greatly. So, when we have an appointment with the doctor – when I’m talking to the doctor, it’s like two doctors talking to each other.

When Summer’s talking to her, they talk on a different plane. It’s much more about mental approach to things and that kind of thing.

And for me, when I think back to the beginning of when we had this and where we are now two years later, we’re living the life that we lived before she was diagnosed to be real honest with you.

We do everything that we did before she was diagnosed the same way we did it before, and it was a trip that probably everybody who gets diagnosed or deals with a person that has the disease takes. When it first happened, it hit us like bricks coming out of the sky hitting us on the face. Literally, when we first went to the hospital and she got the word that there was a problem – as I say, we lived in two separate houses – I literally was afraid to call her phone figuring she might be not there. I was that scared. And then, after we met our doctor, which was extremely fortuitous – when we went to the emergency room, the person that was there, she said these look like leukemia things.

So, she called the oncologist. The oncologist on call is our current doctor, Dr. Tiffany Tanaka, and she’s a specialist in this disease. It was like it was meant to be. And Dr. Tanaka asked the guy to do some other tests and then said, “Send her home, but tell her I need to see her this week.” So, we’re thinking all these horrible things. And its New Year’s weekend, so the clinic is closed for about five days, you know? We’re worrying and worrying and worrying.

We finally saw Dr. Tanaka, and it was like a breath of fresh air. This wonderful doctor has the ability to just communicate with the patients. I’m interested in the disease, so she communicated on my level. Summer is not interested in all the medical jargon, so she was able to explain to Summer what was going on and just very, very reassuring, very reassuring.

And then, I went and started getting information. That’s my way of coping with things. The first place I went was – I went to Patient Power and found a lot of information there.

And then I found the online myelofibrosis support group at Facebook. And that was very, very useful. When I started reading about the fact that some people had this for many, many years – then I said this is not – nothing’s gonna happen in the next year or two. We can go back to living. And once we learned more about it and spent more time with our doctor and Summer was able to live her life once she got taking the medicine – she takes Jakafi.

That controlled the basic symptoms, and we haven’t looked back. We just started living our life the way we had been living it before.

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

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

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

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

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Transcript:

Summer:

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

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

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

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

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

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

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

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

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

Patient Advocacy: How to Create a Visually Compelling Message

Patient advocacy involves sharing your unique knowledge and experience of a disease or condition with the ultimate aim of raising awareness and influencing people to create a desired change. An effective advocacy message is credible, clear and convincing.  When it comes to creating content to support your message, the type of content you create matters.

In an age when people’s attention span averages 8 seconds (that’s shorter than a goldfish!) visuals are memorable and effective because they help people process, understand and retain information more quickly. Furthermore, in an increasingly crowded social media landscape, images can break through the online clutter so more people can find your message.

6 reasons why visual content is effective at getting your message across

  1. People are drawn to images. Eye-tracking studies show people spend longer looking at images on a website than reading text.
  2. People connect more emotionally with images than text.
  3. Our brains process images faster – up to 60,000 times faster than text.
  4. We remember pictures better than any other stimuli. According to neuroscientist, John Medina, we will remember 10 percent of information three days later. But if we add a picture recall goes up to 65 percent.
  5. Images are a universal language. They can be understood regardless of language differences.
  6. Images are shared more often than text only posts. Visual content is more than 40X more likely to get shared on social media than other types of content according to research by Buffer.

How to create your own eye-catching visuals

It used to be the case that to create graphics you had to have graphic design skills, but now any one of us can design eye-catching images using a variety of free and easy-to use apps and online tools.   Below you’ll find listed some of my favorite sites which I use to create professional looking graphics – without spending a cent.

  1. Canva is one of my every-day go-to tools when I am creating visuals. Whether you want to create a Twitter post or Facebook header image, you can do so quickly using Canva’s drag and drop editor. Select from a number of pre-set designs or create something from scratch. It has a multitude of layout options, fonts, images and illustrations to choose from.  You can also add elements such as custom icons, fonts, charts, and illustrations.
  2. Quotes Cover turns quotes or short text into images for social media. You can also use it to create high-resolution images for posters or other print design. Simply enter your quote or text and then choose your preferred design elements, such as font, shadow effect, and color.
  3. Stencil is a super quick and easy way to create graphics. It gives you access to 860,000+ background images. You can add whatever text and/or graphics you’d like to these and directly share them on social media. If you like sharing quotes on social media you can take advantage of their ready to add quotes feature.
  4. Easil is an online graphic design tool with pre-made templates that you can adapt in seconds with simple drag-and-drop tools. It’s especially useful for Instagram and Facebook stories.
  5. Infographics are a great way to present your data in a creative and visually appealing way (see this infographic created by metastatic breast cancer advocate, Jo Taylor, to raise awareness of the signs of secondary breast cancer). To create your own infographics, use a tool like am.
  6. Use Screencastify to create screenshots. This is one of the easiest ways to create images to simply and clearly explain a concept. I also use Snagit and Awesome Screenshot to create my screenshots.
  7. Social Media Resizer is a useful tool to optimize your images for each of the social media sites you are sharing on.  If you don’t size your images correctly for each social network, people won’t be able to see or read them clearly.

Where to find the best images for your graphics

I’m sure you already know that you can’t simply use pictures that appear on Google’s image search. Instead, you need to use a site that provides images licensed as “Creative Commons” — this means the pictures are completely free to be used for personal purposes. The following list of image sites are all great sources of Creative Commons (CC) images.

  1. Flickr is a popular photo sharing platform that allows users to store, sort, search, and share their photos online. It includes a section for photos that have been shared with a Creative Commons license.
  2. FreePik offers users, high quality graphic designs and illustrations. It operates on a freemium business model which means, the majority of the resources offered at Freepik can be used for free, only having to credit the author of the illustration to Freepik.
  3. Pexels provides over 3,800 high resolution photos, collated from other free image sites — making it one of the largest free image directories. Pexels has also added a large library of stock videos to its site also under the CC license.
  4. Pixabay hosts over 650,000 free stock photos, vectors, and art illustrations free of copyrights under Creative Commons. The site also has a collection of stock videos. On the home page, you’ll find a small, curated collection of images and a search bar for more targeted results.
  5. Unsplash gives you access to a bank of 50,000+ free-to-use photos. You can subscribe to receive ten new images every ten days directly into your inbox.
  6. The New York Public Library This site is a living database with new materials added every day, featuring prints, photographs, maps, manuscripts, streaming video, and more.

With so many tools out there, there is no excuse for poor-quality visuals.  Whether it’s a Facebook cover photo, a blog image, or an infographic, there are tools for every skill level. Experiment to find which tools work for you and use them to add more visual appeal to your social media campaigns.

Leveraging Social Media for Patient Advocacy #patientchat Highlights

Last week, we hosted an Empowered #patientchat on leveraging social media for patient advocacy. The #patientchat community came together for an engaging discussion and shared their best advice and tips.

Top Tweets and Advice


Social Media Helps Your Connect with Others

 

 

 

 

 

 

 

 

 

 

 

 

 


Just Start

 

 

 

 


Think About When You Were Sick

 

 

 

 


Full Chat

 

Applying Patient Advocacy Initiatives to Your Patient Journey #patientchat Highlights

Last week, we hosted an Empowered #patientchat on applying patient advocacy initiatives to the patient journey with special guest Seth Rotberg (@Srotberg15). Seth is a rare disease advocate and motivational speaker who is passionate about bringing his personal experience to better support the health community. The #patientchat community came together and shared their best advice and tips.

Top Tweets and Advice

 

You Have Power

 

 

 

 

Be Confident

 

 

 

 

Patient Advocacy Has Benefits

 

 


Full Chat

 

Patient Advocacy: Ten Tips to Develop a Stronger Social Media Presence

Social media is a powerful addition to our patient advocacy toolbox. We can use it to raise awareness of our cause, build a community of supporters, promote our key messages and highlight our patient advocacy activities. To help you strengthen your online presence and create more visibility for your cause, I’ve put together this list of ten actionable tips you can put into practice right away.

1. Optimize Your Social Profiles

Your social media profile should be considered a key element of your advocacy brand. What will people’s first impression be of you when they encounter your online profile? What might make them decide to follow you?   Review each of your existing social profiles with the following points in mind.

  • Is it time to use a more professional picture to represent yourself online? Upload an image that is clear and easy to see, like a head and shoulders shot, or your organization’s logo. Make sure to upload images with the correct dimensions for each social platform (check out this guide to social media image sizes).
  • You have an opportunity to personalize your profile on Facebook and Twitter by uploading a custom header image. Use this opportunity to bring more authenticity to your account, for example you might use a picture of yourself holding a sign with a hard-hitting message. Or perhaps there’s a project or campaign you are currently working on. If so, include an image to represent this in the header space.

Take Action: Complete all sections of your profile to convey a stronger message and identity.  Schedule a review date every few months to check your information is still current.

2. Focus on Being the Expert One Platform at a Time

Each year brings shiny new social media tools and new features for existing tools. It’s tempting to jump on board the latest social media platform with the aim of being everywhere at once; but rather than spreading yourself too thinly, focus on mastering one or two platforms really well before moving on to the next one.

Take Action: Look back on the past six months and ask yourself which social media platform worked best for you? Which gave you the most engagement? And which platform had the least engagement? Consider focussing your efforts on the high-performing platform and becoming known as the go-to expert on this channel before adding anything new to your social media mix.

3. Schedule Your Social Media Posts

The internet is global and if you want your message to reach further than your own backyard, you need to hit multiple time zones. Tweets have the shortest lifespan of any social media post. Even though the latest Twitter algorithm means that posts are no longer displayed chronologically, Twitter is fast-paced, and messages get buried quickly. To counter this, you need to share your post multiple times on Twitter to increase visibility. Scheduling tweets allows you to reach followers when they are most likely to be online (even if you aren’t there at the same time) and allows you to maintain a regular and consistent online presence.

Take Action: Use a scheduling tool like Buffer or Hootsuite to schedule your updates to reach more people, more often. Don’t just post the same update every time. Vary your updates by changing around the headline, highlighting a statistic or quotation or adding different images.

4. Curate Content

The ability to curate credible content to share with our communities is a key skill for patient advocates. Hereditary cancer advocate, Amy Byer Shainman believes “patient advocates not only have a responsibility to curate trusted content but that it is an imperative if you are even going to be calling yourself a patient advocate.”

Content curation is defined as the process of gathering information relevant to a particular topic or area of interest.  While this definition sounds simple, there’s a world of difference between simply gathering information and being an effective curator. A good curator knows how to find, aggregate, and synthesize reliable information, putting it into context for their communities and sharing it in a format that is easy to access and understand.

Take Action:  Set up Google Alerts for the healthcare topics of interest to you.  Google Scholar is also useful as it indexes most peer-reviewed online journals of Europe and America’s largest scholarly publishers.

5. Create Visual Impact

You’ve surely heard this before, but it’s worth reiterating: images matter — a lot. In an age when people’s attention span averages 8 seconds (that’s shorter than a goldfish!) visuals are memorable and effective because they help people process, understand, and retain more information more quickly.

Visual content is 40x more likely to get shared on social media than other types of content according to research by Buffer. Furthermore, people connect more emotionally with images than text, and in an increasingly crowded digital landscape images can break through the online content clutter. The type of visual assets you can create include images, videos, infographics, quotes and GIFs.

Take Action: Add an image to all your online posts — even those that are text-based. Create a strong visual identity and maintain consistency across all your images by sticking to the same colours, fonts, and layouts. Read How To Create Professional GraphicsEven If Youre Not a Graphic Designer for more tips.

6. Use Relevant Hashtags

Hashtags are a powerful way to increase your visibility on social media. According to Twitter’s own research tweets with hashtags show a 100 percent increase in engagement (clicks, retweets, likes and replies).  Jo Taylor, a moderator of the UK-based breast cancer Twitter chat #BCCWW, explains that “finding disease hashtags opens up connections. If you connect with others you will be able to meet others easily online and you will build and learn from there.”

Take Action: Visit symplur.com to find the relevant hashtags for your disease area. If you can’t find a hashtag related to your topic, you might consider creating your own. For more information on using hashtags strategically read Everything You Ever Wanted To Know About Hashtags in Healthcare…But Were Afraid To Ask!

7. Live-Report Conferences and Events

Reporting live from an event is a way of engaging your followers by sending updates about an event as it occurs. It allows you to expand the reach of in-person events to provide valuable insights to those who are unable to attend in person. It’s also a way to increase your visibility as an attendee and enhance your credibility.

Live reporting tools include live-streaming using Facebook LiveInstagram Live, and Periscope (Twitter’s live-streaming app).  You can also share posts to your Facebook page and share photos and video clips via Instagram and Snapchat during the event.

Take Action: Read The Advocate’s Guide to Reporting Live from Conferences and Events for more tips on live-reporting.

8. Take Part In Twitter Chats

Twitter thrives on its community and the more you connect with other users the more quickly you will grow your own following. Joining a Twitter chat is a super way to connect and engage. When you attend a Twitter chat regularly, people will get to know you and in this way, you can quickly develop and grow your own network of supporters.  If you’re not familiar with them, a Twitter Chat is a public Twitter conversation around one unique hashtag. This hashtag allows you to follow the discussion and participate in it.

Twitter chats can be one-off events, but more usually are recurring weekly chats to regularly connect people, for example #PatientChat held every other Friday at 10:00 am Pacific/1:00 pm Eastern. The chat will be hosted and the host will ask questions along the way to stimulate discussion and sharing of ideas. There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project. This is also a useful resource to find Twitter users to follow. In addition you will find past transcripts of chats on the website so you can familiarize yourself with the chat and its norms before taking part.

Take Action: There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project. And “if you can’t find a tweet chat you enjoy,” recommends patient advocate, Annette McKinnon, “start a new one, register it @symplur and build a new community.”

9. Create a YouTube Channel

People engage with video more than any other form of content (written, audio, images, etc.). YouTube with more than 1.8 billion monthly active users remains the online video leader. 4 million YouTube videos are viewed every day, and the average session duration of 9 minutes and 28 seconds. That’s more than many other social networks.

Take Action: While producing your own video may seem daunting, video creation has never been more accessible through smartphones.  You can also create simple videos for your channel using free tools such as Adobe Spark and Lumen5 (see my YouTube channel for examples of Lumen5 videos).

10. Maintain a Consistent Content Creation and Promotion Schedule

Social media is an ongoing commitment. You need to post consistently to stay in front of your audience’s eyes and keep growing.  One key to maintaining a steady stream of quality content is to re-purpose what you already have. Check your blog’s analytics (or Twitter and Facebook analytics) to see the most popular posts you’ve written or shared.  Can you expand on these to include new research or thinking? Perhaps the content can be turned into an infographic or a slide-deck.

Take Action: Set aside one day each month to map out upcoming cause awareness days. Then use a simple excel spread sheet to create a calendar for social media postings. Include relevant hashtags and images.  A content calendar helps you maintain a consistent content production schedule, enabling you to plan for seasonal content, and annual campaigns.

Social media is an ever-evolving and fast-moving field, and with so much to learn and do, it’s easy to feel overwhelmed. You don’t have to implement all these tips at once. Try adding one new strategy to your social media plan each week and measure its impact at the end of each month. This way you will know which of these strategies are moving you closer to a stronger online presence.

Here’s to your social media success!

 

Patient Advocacy: Six Steps to Craft a Compelling Message

Patient advocacy involves sharing your unique knowledge and experience of a disease or condition with the ultimate aim of raising awareness and influencing people to create a desired change.  This might include speaking at an event, telling your story in the media, or working with an organization to develop new treatment guidelines.  This month’s post will show you the steps you should take to create a compelling message to get key issues across to your audience.

1. Develop Your Key Message

The first step is to work out the key message you want to communicate. Asking yourself the following questions will help you focus on the main issues.

  • Why do I want people to know about this condition?
  • Is very little known about the disease?
  • Are doctors not very good at diagnosing it?
  • What is the impact of the condition for me and for others?
  • What improvements are needed? Locally? Nationally? Internationally?

An effective message is credible, clear and convincing – ideally you should be able to communicate it in less than one minute – for example, “Cancer-related fatigue is poorly understood, but has been reported in 30–50% of breast cancer survivors in the first 5 years after treatment.”  The recommended approach is to have one primary message supported by two or three secondary messages. Write down your core message first. The purpose of the secondary messages is to support the core message and to explain how it can be achieved.

Insider Tip

Patient advocate and blogger, Kay Curtin (@KayCurtin1), who is a stage IV Melanoma patient, suggests taking a look at what other organisations are doing before committing “precious time and resources on replicating what’s already been done.”  Christina Lizaso (@btrfly12), co-moderator of the #gyncsm Twitter chat, agrees. “Look first to collaborate and move things forward vs. starting from scratch,” she recommends, “then think outside of the condition – what is the most important thing for someone who has never heard of it to know?”

2. Identify Your Target Audience

Deciding who your target audience is and how best to reach them is the next step. There are several broad groups you might consider, including other people with your condition, healthcare professionals, the media, legislators or the general public. Which group you focus on depends on what you are trying to achieve.  The more specific you are in identifying your audience, the more effective your message will be. To follow on from my example above, if I want the guidelines for cancer treatment to include cancer-related fatigue, I might want to target healthcare professionals, other patient organizations who are campaigning on similar issues, and organizations like the American Society of Clinical Oncology.

3. Craft Your Message

A persuasive message can be summed up in three words “Make Me Care.” Sharing your story and the stories of others affected by your condition is the most powerful and compelling way you can do this.  As Jo Taylor (@abcdiagnosis) founder of After Breast Cancer Diagnosis says, “your story is everything – it raises awareness and shows the passion behind why you are trying to make change as a patient advocate.” Jo also believes your story connects you to others with a similar story, which in turns helps to build strong networks to bring about change. Dementia advocate, Pablo Barredo (@Diario1Cuidador) points out that stories help create bonds not just with patients but with their caregivers too. “Patients and caregivers want personal stories and people who will understand them, not scientific terms they may not understand,” he says.  “They need to feel connected to someone who speaks their own language and understands them.”

Insider Tip

When sharing your story, author and breast cancer blogger, Nancy Stordahl (@NancysPoint) points out that “you have to be willing to share from your heart. Be real. Be you. It’s all about being authentic. Always come back to that. Allow others to see your vulnerabilities. When others see that you’re authentic, you’ve made it easier for them to care, not just about you, but about your message(s). Once they care they’ll want to learn more.” Antibiotic resistance campaigner, Vanessa Carter (@_FaceSA) agrees that authenticity is key. “You have to keep telling your story from the heart,” she says, “which is not easy when you’ve repeated it for so many years. It takes a lot of practice. I think it’s one of the greatest arts of advocacy.”

Be prepared that telling your story might make you feel emotional and vulnerable, so think carefully about how much you are willing to share before you make the decision to share it.  Let the audience know your boundaries. Be mindful too of boundaries if you are talking about a family member. How conformable are they with you sharing their story or aspects of your own story that may affect them? In Nancy’s words, “each person needs to find her/his own voice over time, figure out what works and feels comfortable for you, and then go with it.”

4. Create a Compelling Call-To-Action

According to the WHO, “you cannot mobilize people unless you ask them to do something. Aim to craft messages that will convince your audiences to act – rather than messages that simply communicate what you want to say.   As Christina Lizaso reminds us, “awareness is not the end goal – it should be taking you to education and to action.”

Think about what you want your listener or reader to do when you are finished telling your story? What will motivate them to act?  Outline clearly the next steps they need to take.  “Awareness should immediately be followed by an opportunity for action,” says breast cancer researcher and advocate, Jamie Holloway (@jamienholloway). While a “dramatic personal story is a more compelling ‘hook’ than just rhyming off a list of facts (no matter how alarming the facts are!),” says Carolyn Thomas (@HeartSisters), author of A Woman’s Guide To Living With Heart Disease,  “a story by itself isn’t the message.”

Insider Tip

Alison Cameron (@allyc375) feels strongly that sharing a personal story should be a starting point for action, not the end goal.  “For me, the personal story has its place yes, but is a starting not an end point, “she says. “The crucial thing is not to fall into ‘inspirational patient’ mode but to work with those listening to come up with concrete actions for change. I got very weary of being parachuted in to ‘tell my story’ then kicked out swiftly after being patted on the head and told how “inspirational” I am. What changed as a result of all that? Not a great deal.”

5. Communicate Your Message

Now that you have identified your target audience and crafted your message you need to think about how to communicate it. The most straight forward way of communicating is directly such as a face—to-face meeting, an email, or a phone call.  Plan ahead for how you will share your story.  What supporting material will make your story stronger? Can you share research data to support your key message(s)?  You don’t need to use too many facts, and detailed data – pick the data that is most relevant to your audience to help make your point; for instance, state data would be important to a state legislator, while patient outcome data would be relevant to healthcare professionals.  The WHO recommends you use facts and figures wisely – if you use too many it can overload and confuse your audience. Balance statistics with stories that convey the human cost of disease.

You should also use blogs and social media to spread your message to a wider audience. Bear in mind the content that works best on the platforms you have chosen. The continuing growth of visual platforms, such as Pinterest, Snapchat and Instagram means that creating visual content is more important than ever. There is a reason the most widely shared content nowadays is highly visual because visuals can rapidly create an emotional response and convey an idea very quickly. The type of visual assets you can create include images, videos, and infographics.

Insider Tip

Jo Taylor created her own infographic to raise awareness of the signs of secondary breast cancer. There are many tools out there which can help you create appealing images without any design skill. I’ve put together a list of free tools here which you may find useful.

6. Promote Your Message

People are more likely to believe and understand a message heard from more than one source. Promote your key message(s) through social media and encourage people to spread it through their social networks too. Research shows that 69% of people share information because it allows them to feel more involved in the world, and 84% share because it is a way to support causes or issues they care about. By making it easy for visitors to your website or blog to share your content, you increase the likelihood that they will take this action. Make sure your social sharing buttons are clearly visible on your site. This is the most obvious (though sometimes overlooked) way to encourage readers to share your content. By placing the buttons on the side or at the end of the article, people will be more inclined to share the article.

Insider Tip

Use a tool like Click to Tweet in your posts. This useful tool generates one-click tweet boxes or links that can be shared through your website, your blog, or via email, to increase social shares.

Wrapping Up

Raising awareness is the first step on the path to change. Change won’t happen right away and it will require patience and persistence. Siobhan Freeney (@breastdense) founder of Being Dense, an organization which raises awareness of breast density and its associated links to breast cancer and screening, believes “awareness is the precursor to change,” and you need “resilience, research, passion and patience” to succeed.  If success feels slow in coming, don’t lose heart.  As triple negative breast cancer blogger, Catherine Foy (@mytripleneglife) points out, “without you realizing it, your story may have given hope to someone struggling.” Even if your story hasn’t changed the world, it may, to quote Kay Curtin, “change somebody’s world.”