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Voice of America: Dr. Sajjad Iqbal

Voice of America: Dr. Sajjad Iqbal from Patient Empowerment Network on Vimeo.

Featured on Voice of America’s South Asia, Sajjad Iqbal, recounts how he relentlessly fought and advocated for his health and how he takes what he learned to help other cancer patients.


Transcript:

Speaker 1: 

In 2002, with the diagnosis of an extraordinary form of parotid cancer in Dr. Sajjad Iqbal, doctors announced further bad news that his survival chance for next 2 years was just 30 percent. Such patients cannot even survive for the next 5 years.

Dr. Sajjad Iqbal:    

If nobody survived for 5 years, why is it such a bad thing?  Once upon a time no one could go to the moon. Now, many have gone there. So, I’ll be the first patient who lived for 5 years.

Speaker 1:   

Instead of surrendering to cancer, he expanded his scope of study and started to explore new research on similar cancers, like breast cancer, ductal carcinoma, all cancers of head and neck and prostate cancer. His cancer had HER2+ features. A new medicine was being given to HER2+ breast cancer patients. Doctors did not agree to give that particular medicine to Dr. Sajjad Iqbal as there were no studies showing its usefulness in his type of cancer`. However, he not only convinced doctors with his logical wisdom but persuaded them to conduct new research by pointing out flaws in existing research.

Dr. Sajjad Iqbal:

After seven years, another study was published that included just my type of cancer. They said that 60 percent of patients got better from this medicine.

Speaker 1:     

In 2009, when his cancer recurred in lungs, then he wanted to have Endoscopic thoracic surgery. But doctors would not agree to do it. Finally, he found his desired doctor at Cancer Hospital New Jersey who agreed to do Dr Sajjad’s Endoscopic surgery keeping in mind that he knew more about his disease than others.

Dr. Sajjad Iqbal:  

The cancer has never come back in the lungs. If the cancer stirs even slightly, we make treatment changes immediately. You can say that we have imprisoned the cancer.

Speaker 1:  

There is a saying that hope is essential for fighting cancer. You have to be your own best advocate.

Pat:  

How are you?

Speaker 1: 

When Pat was diagnosed with cancer, she had been working in Dr. Sajjad’s clinic for 20 years. She considers it her good fortune that Dr. Sajjad was with her.

Pat:    

He said to me that I want you to learn about your cancer, read about it yourself, and then we would talk about it. And he was with me at each step. He even went with my husband and me to see the Doctor in Sloan Kettering. And then again guided us as to which doctor is better, who should I see. To check a doctor’s background, skill and qualification, for all that I depend on him.

Speaker 1:  

And when Pat’s husband was diagnosed with Prostate cancer and her daughter also had cancer, Dr Sajjad was there to guide. He directly helps many other cancer patients like Pat, in many different parts of the world, through Patient Empowerment Network. It is a free website where people, suffering from cancer, can get cancer related services and information.

Fauzia Iqbal:

Sajjad sings to her in Punjabi.

Speaker 1:

Dr. Sajjad considers family support important along with treatment.

Fauzia Iqbal:

Sajjad goes for chemotherapy alone and he is never afraid of taking bold steps like if he has to undergo some surgery. If you have such a personality, it becomes easier to deal with, and as far as family is concerned, everyone loves him & takes care of him.

Speaker 1:  

Dr. Sajjad became part of the news when a patient from New Zealand who he had helped, came to see him by travelling 9,000 miles distance. She had been given six months to survive by her doctors. Under the guidance of Dr. Sajjad, now she is cancer free. Dr. Sajjad is living an enriched life with his three children and their children. He continues to fight the battle against his own cancer. He has recorded that story in his book Swimming Upstream. This book gives hope and a different perspective to many who are struggling through difficult times. (Saba Shah Khan, Voice of America, Ridgewood, New Jersey).

Quinoa Stuffed Bell Peppers

Quinoa Stuffed Bell Peppers from Patient Empowerment Network on Vimeo.

Ingredients:

  • 3 cups cooked quinoa
  • 1 (4-ounce) can green chiles
  • 1 cup corn kernels
  • 1/2 cup canned black beans, drained and rinsed
  • 1/2 cup petite diced tomatoes
  • 1/2 cup shredded pepper jack cheese
  • 1/4 cup crumbled feta cheese
  • 3 tablespoons chopped fresh cilantro leaves
  • 1 teaspoon cumin
  • 1 teaspoon garlic powder
  • 1/2 teaspoon onion powder
  • 1/2 teaspoon chili powder, or more to taste
  • Kosher salt and freshly ground black pepper, to taste
  • 6 bell peppers, tops cut, stemmed and seeded

Recipe

  1. Preheat oven to 350 degrees F.
  2. In a large bowl, combine quinoa, green chiles, corn, beans, tomatoes, cheeses, cilantro, cumin, garlic, onion and chili powder, salt and pepper, to taste.
  3. Spoon the filling into each bell pepper cavity. Place on prepared baking dish, cavity side up, and bake until the peppers are tender and the filling is heated through, about 25-30 minutes. (If you’re running short on time, microwave the empty bell peppers for two minutes before stuffing them, and then bake for 8-10 minutes).

History of Bell Peppers

Bell peppers, also called Capsicum annum, are members of the nightshade family of plants. Originating from South America, a wild variety of bell peppers had seeds that dated back to 5000 BC. Though bell peppers had been widely consumed in South America, Central America, and Mexico, it was Spanish explorers and Christopher Columbus who brought these peppers to Europe where they became popularized. Relatives of bell peppers in the nightshade family include tomatoes, eggplant, and potatoes. Paprika is the ground spice made from dried red bell peppers.

Medical Properties of Bell Peppers

Bell peppers are packed with vitamins, minerals, antioxidants, and water. Fresh bell peppers are made up of 92 percent water. Most notably, red bell peppers are especially high in vitamin C and the antioxidant capsanthin. One medium red bell pepper supplies 169 percent of the recommended daily intake of vitamin C. Bell peppers also supply vitamin A, vitamin B6, vitamin E, vitamin K1, folate, potassium, lutein, luteolin, quercetin, and violaxanthin. With the vitamins, minerals, and antioxidants found in bell peppers, they are touted as a healthy food that also helps fight cancer and conditions like heart disease. In supplying a combination of both iron and vitamin C, bell peppers help fight iron anemia with vitamin C aiding the body in the absorption of iron. The antioxidant carotenoids of zeaxanthin and lutein found in bell peppers help protect eye health and against oxidative damage to the eyes.

Surprising Facts About Bell Peppers

Yellow, orange, and red bell peppers are really green bell peppers that have ripened and have increased in sweetness during the ripening process. Covering a large part of the color rainbow, bell peppers are available in red, orange, yellow, green, purple, white, and striped varieties. Red bell peppers boast a high vitamin C content – twice the amount contained in green bell peppers. Even with their bitter flavor, green bell peppers are the most popular bell pepper in the United States. Though many think that bell peppers are vegetables, they are actually fruits like others from the nightshade family. Yellow and red bell peppers contains four times the amount of vitamin C compared to oranges, and purple bell peppers have a similar bitter taste like green bell peppers.


See all recipes from the Cook & Learn series here.

Baked Avocado Tacos

Baked Avocado Tacos from Patient Empowerment Network on Vimeo.

Ingredients:

Tacos

  • Oil for spraying pan and avocados
  • 2 large, ripe avocados, seeded and peeled
  • ¾ cup (175 mL) panko bread crumbs
  • ½ tbsp (7 mL) chipotle rub
  • 10-12 corn or flour tortillas

Slaw & Sauce

  • 5 oz (150 g) radishes, trimmed
  • 1 medium carrot, peeled and cut into thirds
  • ½ lime
  • ⅓ cup (75 mL) fresh cilantro leaves
  • ½ cup (125 mL) 2% plain low-fat Greek yogurt
  • ⅛ tsp (0.5 mL) salt

Recipe

  1. Preheat the oven to 450°F (230°C). Spray pan with oil
  2. Cut the avocados into slices. Lay the avocado slices on a cutting board.
  3. Combine the panko and rub in one tray. Lightly spray the avocado slices with oil. Dip 4–5 avocado slices at a time in the panko mixture and coat on both sides.
  4. Place the avocado slices on the pan and bake for 10–12 minutes, or until they’re light golden brown and crispy.
  5. For the slaw, grate the radishes and carrot into a small bowl.
  6. Zest the lime to measure ½ tbsp (7 mL) and set it aside. Juice the lime. Grate the cilantro. Add the lime juice and 1½ tbsp (22 mL) of the cilantro to the mixing bowl. Toss to combine.
  7. For the sauce, combine the Greek yogurt, lime zest, salt, and remaining cilantro in a small bowl.
  8. Transfer the pan from the oven to a cooling rack. Wrap the tortillas in a damp paper towel and microwave for 30 seconds, or until warmed.
  9. Spread the sauce onto the tortillas. Place 2 avocado slices on each tortilla and top with slaw.

History of Avocado

Experts believe that avocados – from the Persea americana tree – originated almost 10,000 years ago in the South Central state of Mexico called Puebla. And researchers think that domestication of the avocado tree to grow avocados occurred around 5,000 years ago. Along with its value as a food source, avocados were also prized for their perceived ability to provide mythological powers in ancient Aztec culture. Avocados were later introduced in the 1500s to the people of Europe by Spanish explorers who encountered them in North America, Central America, and South America.

Medical Properties of Avocado

Avocados are packed with vitamins, minerals, antioxidants, fiber, and healthy fats – including vitamin K, folate, vitamin C, vitamin B5, vitamin B6, vitamin E, potassium, monosaturated fatty acids, lutein, and zeaxanthin. The oleic acid contained in monosaturated fatty acids in avocados are linked to lower inflammation in the body and positive effects on genes associated with cancer, and potassium supplied by avocados is connected with reduced blood pressure. Avocados are touted for being heart-healthy with studies linking them to reduced cholesterol and triglyceride levels. The fiber supplied by avocados – with 75 percent being insoluble fiber – aids in maintaining a healthy digestive system. Even the fat contained in avocados assists in the body’s absorption of fat-soluble vitamins like vitamin A, vitamin D, vitamin E, and vitamin K and with antioxidants like carotenoids. The carotenoids of zeaxanthijn and lutein in avocados have been connected to reduction in degeneration of eyesight and lower rates of cataracts. Avocados also contain glutathione, which aids in function of a healthy immune system.

Surprising Facts About Avocado

An average size avocado contains 9 grams of fiber, which is the most among all fruits. Avocados actually belong to the same plant family as cinnamon – Lauraceae, commonly known as laurels. Avocados contain more potassium than bananas – weighing in at 975 milligrams per avocado compared to 544 milligrams of potassium per banana. Avocados were known as alligator pears in the U.S. until the U.S. Department of Agriculture renamed them as avocados. The summer of 2017 was especially memorable in the history of the avocado when over 3 million avocado toast photos were uploaded daily to Instagram.


See all recipes from the Cook & Learn series here.

Essential Lab Tests for Myeloproliferative Neoplasm (MPN) Patients

Essential Lab Tests for Myeloproliferative Neoplasm (MPN) Patients from Patient Empowerment Network on Vimeo.

 Lindsey Lyle, a physician assistant specializing in MPNs, reviews the lab tests that should be administered following an MPN diagnosis and how the results could affect overall care.

Lindsey Lyle is a physician assistant at the University of Colorado Cancer Center, specializing in hematological malignancies with a subspecialty in myeloproliferative neoplasms (MPNs). More about this expert here.

See More From the The Path to MPN Empowerment

Related Programs:

Can Diet and Exercise Reduce MPN Symptoms?

Expert Tips for Managing MPN-Related Anxiety

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


Transcript:

Lindsey:

When somebody is diagnosed with an MPN, there are a variety of tests that are important for coming up with treatment strategies. And so, really, before starting treatment, it’s fairly imperative to have a CBC, or complete blood count, which was very likely done that led to the diagnosis of the MPN, but that’s very critical, as well as having a differential. This is basically just looking a little bit deeper at the white blood cells and their components, so that’s a critical part of the CBC, or complete blood count.

And then, having a chemistry panel, just to look at organ functioning, such as the kidney functioning and the liver functioning, as well as different electrolytes that may be indicative of something going on that would maybe impact treatment.

Additionally, having a bone marrow biopsy with molecular testing is advised. This is very critical in leading to the diagnosis of the MPN and then, also, really differentiating what subtype of MPN a patient may have.

The bone marrow is very critical for this purpose, and the genetic testing helps us to understand perhaps if a patient is having a higher-risk disease or a lower-risk disease and can help guide treatment as well. There are a variety of other chemistry tests that are done that can help specifically when looking at patients with polycythemia vera. This may be called an erythropoietin level.

Additionally, iron studies are generally recommended before starting treatment for MPNs, just to assess iron storage, availability, and that sort of component to the treatment may vary depending on that result. Additionally, if patients are having any sort of symptoms related to an enlarged spleen, generally, having an imaging study may be warranted if the symptom is quite severe and causing problems, and getting a baseline prior to starting treatment is generally a good idea.

When looking at a CBC, there are really three main cell lines that we monitor closely in MPNs regardless of the subtype, and this includes the white blood cell count, the red blood cell count or hemoglobin and hematocrit – those are measures of the total red blood cell count – and then, also, platelets. And so, these really are three different types of cells that your bone marrow produces that help with different functions.

And so, monitoring for any sort of changes within these three cell lines – white blood cells, red blood cells, or platelets – can really help us know maybe how the disease is changing, how a patient is responding to treatment, so these three key laboratory values are very necessary and really help us as providers and U.S. patients monitor progress, or for any changes in a positive way, or perhaps in a way that needs to be addressed.

Diagnosed With an MPN? Why You Should Consider a Second Opinion.

Diagnosed With an MPN? Why You Should Consider a Second Opinion. from Patient Empowerment Network on Vimeo

 Physician assistant Lindsey Lyle explains the importance of seeking a second opinion when diagnosed with an MPN.

Lindsey Lyle is a physician assistant at the University of Colorado Cancer Center, specializing in hematological malignancies with a subspecialty in myeloproliferative neoplasms (MPNs). More about this expert here.

See More From the The Path to MPN Empowerment

Related Programs:

Am I Meditating Correctly? Getting the Most out of Mindfulness

Expert Tips for Managing MPN-Related Anxiety

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


Transcript:

Lindsey:

When a patient is initially diagnosed with an MPN, seeking a second opinion is generally a very good idea, especially if patients are perhaps in an area where they do not have access to academic medical center.

The reason is that MPNs are such a small percentage of blood cancers – and, blood cancers in and of themselves are very rare, so MPNs are very rare, and especially in rural places, physicians do not have access or experience so much with MPNs. So, especially in those scenarios, I always advise a second opinion.

However, even within the academic medicine world, for example, if a patient is referred to me by their primary care physician or our institution, we always offer patients to seek a second opinion. Really, this is to gather information and either encourage the patient because the recommendation is the same or also to perhaps have a different idea for treatment that may fit the goals of the patient better, and so, I’m always telling patients to seek second opinions.

An Expert Summary of Current MPN Treatment Options

An Expert Summary of Current MPN Treatment Options from Patient Empowerment Network on Vimeo.

 MPN expert, Lindsey Lyle, provides an overview of therapies used to treat myelofibrosis (MF), polycythemia vera (PV) and essential thrombocythemia (ET).

Lindsey Lyle is a physician assistant at the University of Colorado Cancer Center, specializing in hematological malignancies with a subspecialty in myeloproliferative neoplasms (MPNs). More about this expert here.

See More From the The Path to MPN Empowerment

Related Programs:

Can Diet and Exercise Reduce MPN Symptoms?

Expert Tips for Managing MPN-Related Anxiety

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


Transcript:

Lindsey:

To overview the treatment types for MPNs, we have a variety of different mechanisms in which we use, and clumping these three main MPNs together, we can kind of break it down into, first of all, cytoreductive therapy, which is nonspecific, but really just reduces the amount of cells the bone marrow is producing. And so, it’s really to control the blood counts. And, different types of cytoreductive therapy generally are – hydroxyurea is used probably the most commonly.

There are some other sorts of chemotherapy that may be used in different instances. We also have biological agents, such as interferons, that may be used in patients with MPNs. We then have JAK inhibitors, which there are two FDA-approved JAK inhibitors at this point for myelofibrosis, and one approved for polycythemia vera.

We also have a variety of novel agents in clinical trials. These may be inhibiting different pathways of the cellular production or different signaling pathways at the level of the stem cell, so there are a variety of those. We also use hypomethylating agents in some patients who maybe have higher-risk disease, mainly myelofibrosis, that really changes the way that the stem cells are produced in the bone marrow in order to control the cell counts and also symptoms.

So, there are a variety of therapeutic measures that are taken. Additionally, not necessarily medication-related, but phlebotomy, which is considered a therapy for polycythemia vera, is generally used in order to reduce red blood cell volume, and then, aspirin is commonly used, especially in polycythemia vera and essential thrombocythemia as a supportive care medication to reduce risk of complications from the disease.

What is Targeted AML Therapy?

What is Targeted AML Therapy? from Patient Empowerment Network on Vimeo.

 AML expert, Dr. Jessica Altman, defines targeted AML therapy and outlines available treatment options. Want to learn more? Download the Program Resource Guide here.

Dr. Jessica Altman is Director of the Acute Leukemia Program at Robert H. Lurie Comprehensive Cancer Center of Northwestern University.

See More From The Fact or Fiction? AML Series


Related Resources

 

Your Pro-Active AML Patient Toolkit

 

AML Genetic Testing Explained

 

What’s Next in AML Research?


Transcript:

Patricia:

Can you talk a little bit about targeted therapy?

Dr. Altman:

Absolutely. So, targeted therapy – while meant to be specific, because a target is meant to be specific – targeted therapy has become a relatively broad characterization of additional treatments. We think about targeted therapy as the addition of agents that specifically inhibit or target an abnormality associated with the leukemia. The most prominent targeted therapies right now involve specific mutations seen in Acute Myeloid Leukemia. 

For instance, about 30% of adults who have newly diagnosed AML will have a mutation in something called FLT3, or F-L-T-3. There is now an approved drug that is combined with standard intensive induction chemotherapy that improves the
response rate and overall survival in adults with AML with a FLT3 mutation. In addition, there is now an approved agent for relapsed and refractory FLT3 mutating leukemia. 

Patricia:

What about molecular testing? What can you say about that?

Dr. Altman:

Molecular testing is part of the workup for an adult or a child when they’re newly diagnosed Acute Myeloid Leukemia. And molecular abnormalities look for specific known mutations that occur in Acute Myeloid Leukemia cells. 

For instance, that FLT3 that I mentioned. In addition, the IDH mutation. Looking for those mutations has always been important in understanding the prognosis, but it’s now especially important because some specific mutations, we have additional therapies that we can give as part of initial treatment or for relapsed disease that target those mutations. So, not only do they have a prognostic role, but they have a treatment impact as well.

Myeloma Patient Cafe® – Genetic Testing from A Myeloma Patient Perspective

Myeloma Patient Cafe® – Genetic Testing from A Myeloma Patient Perspective from Patient Empowerment Network on Vimeo.

PEN Board Member, Jack Aiello, leads a myeloma patient panel discussion on genetic testing.

See More From The Myeloma Patient Cafe®


Transcript:

Jack:

Thanks for joining us for this Patient Empowerment Network Myeloma Patient Café. I’m Jack Aiello. I’ve been living with myeloma since 1995, and the world has changed a lot since then, including the introduction of genetic testing. That’s gonna be our topic of discussion today. I personally have never had genetic testing because it wasn’t done back then, so I’m looking forward to learning from you all, our patient panel, who have been diagnosed more recently than I have.

We’ll talk exactly what genetic testing is about, why you might get genetic testing done, and more, but we won’t really go into the science of it. Instead, this is gonna be a conversation among patients and caregivers and serve off as a jumping point to pique your interest in genetic testing, and have a discussion with your doctor about it if you desire.

Before we dive in, I wanna meet our panel, and I’m gonna ask each of you to introduce yourself. Tell me when you were diagnosed and the treatments you’ve gone through, and I will start with Doug.

Doug:

I’m Doug Kenaley. I was diagnosed in 2015, and my initial induction treatment is a little different than most. It was really only – it turned out to be Velcade and dex, and it got me down to the level where I could have a stem cell transplant, so then, I had an auto stem cell transplant. And then, about five months after that, I joined the elotuzumab maintenance trial, so I’ve been on elotuzumab and Revlimid since that point.

Jack:

Okay. Peggy, tell us about yourself.

Peggy Lindley:

My name is Peggy Lindley, and I was diagnosed with this lovely disease on Valentine’s Day of 2019, and it was just from my regular doctor. I go every year for my bloodwork, and he found something with me, and he found it only – he was aware of it because his mother was diagnosed a couple of years before that, so he’s the one that got me there because I would have never thought that. He asked me, “Do you have any bone pain or anything?” I said, “Well, just my back,” and that was it.

Anyways, he told me what I had. Then, I had a bone marrow biopsy, and that showed it. So, I went through five rounds of the Revlimid, dex, and Velcade, and then, in July of last year, I had my stem cell transplant, and I got my stem cells back on July 12th, and then, in November of last year, I started with the maintenance therapy, which is elotuzumab with Revlimid, so I do that every 28 days now. It was a little bit sooner, and you start one week – it was a progression, so now, I go once every 28 days.

Jack:

Got it. Nancy, tell us about yourself.

Nancy:

My name is Nancy Raimondi, and I was initially diagnosed in 2006 with smoldering multiple myeloma, and I was followed over the next nine years – I just continued to smolder until 2015. I developed a plasma cytoma, and that got biopsied, and it was 60 percent myeloma cells, so I needed treatment, so I started treatment July of 2015, I was diagnosed as high risk, so I was put in a clinical trial that included carfilzomib.

I had five rounds of chemo, did tandem stem cell transplants, and finished everything about seven and a half months later. Went in maintenance therapy the first year, was when Ninlaro was just released, so I was on Ninlaro, Revlimid, and dex for a year, and then, that got changed to daratumumab, Revlimid, and dex, and I was on that for another year. And then, in December 2017, I was MRD-negative, and I’ve not been on any treatment for myeloma since then.

Jack:

We’ll talk more about MRD-negative because that’s important to this discussion. George, how about yourself?

George:

My name is George Burrell. I was diagnosed in April of 2011. Ironically, the day that I was diagnosed was Easter Sunday and my wife and I’s anniversary. The – doctor told us we had multiple myeloma, and that we needed to get the numbers down so that he could put me in a stem cell transplant. I’ve had two of those, and I’m currently on a three-stage regimen of Cytoxan, dexamethasone, and Kyprolis, and it seems to be working quite well. My numbers are down, and have been holding pretty steady for about four or five months now, so we’re really happy.

Jack:

I thought it was interesting, Peggy, how George introduced the fact that “we” were diagnosed with myeloma, so maybe you can talk about what that experience was like for you.

Peg Burrell:

Well, definitely, it is a journey of “we,” and it was very frightening. I’d only heard the word “multiple myeloma” one time, with a colleague from work whose father was much older, who’d had multiple myeloma. And, George’s symptom was low iron anemia, and he’d been sent to an oncologist for iron infusions, but he never presented any other symptoms.

The doctor would say, “How are you?”, and he would say, “I’m fine,” and a year later, he was rushed to the emergency room with bleeding ulcers, and that’s when the oncologist just happened to be in the ER, and they thought George was having a heart attack, his blood count was so low, so they did a CT scan, and his oncologist came in and said, “This is multiple myeloma, I’m pretty sure.”

So, it was devastating, very frightening, but once we had a game plan – and, the one thing that George told me – he says, “Stop treating me like I’m dead,” and I was running over curbs taking him to appointments, and I was just a wreck. He was like, “You’re gonna kill me.” But, it is quite a journey, and I’m happy that I’ve been able to be there with him.

Jack:

Good. Since this Patient Café is to focus on genetic testing, let’s first get agreement what genetic testing is, which is basically looking at potential mutations in your myeloma cells. So, with that in mind, other than me, who’s never had genetic testing, has every patient here had genetic testing?

Doug:

Yup.

Peggy Lindley:

I have.

Jack:

Probably, right? Because you begin maybe with a FISH and cytogenetics testing. Doug, when you had that, did that yield anything interesting for you?

Doug:

Mine was a bit interesting because I went to a local oncologist, even though I was here in Houston, who’s close to me, and he had done a stint at MD Anderson. And so, he presented it to me when I was diagnosed – “You should have genetic testing right away.” So, I looked into it and thought it was a good idea, even though four years ago, even, there wasn’t a whole lot more – you have a test, but then what? That kind of thing.

This emphasizes why a lot of times, you wanna go to a specialty place like MD Anderson, because they did the bone marrow biopsy, and the tech put it in the wrong solution, and it destroyed the sample. But they were gonna hold off my induction. So, the doctor was pretty mad, but my first attempt was a failure. But then, he said, “Well, ultimately, you’ll probably go for a stem cell transplant. We’re gonna hook you up with MD Anderson right away, even during your induction.”

And, the first thing they do here is genetic testing. So, at that point, I got a genetic test – successful genetic test – and it was interesting because the results came in, I got the labs, and I’ve done science – I’m a scientist, I’m a geologist – but it’s just a lot of alphabets, and it’s very complicated. They’re worse in the summaries. It said, “No deletions found, no translocations found,” things like that, but you really couldn’t understand the rest of what was in there, and you kind of suspect there was something hidden in there.

But I sat down with the doctor here, and he went over it. It said basically, I was a standard-risk patient, and my FISH and cytogenetics showed that I had tetrasomies – so, four versions of the genes instead of the normal two. And, he says, “So, if you wanna look at it, that’s kind of a good news thing because we have drugs that target certain things, you have lots of those things to target – multiple copies of those things,” so that kind of relaxed me a little bit. I think it actually impacted my standard of care a little bit, and certainly, my quality of life, because I think the doctors relaxed a little bit too. They wanna get ahead of it if you’re high-risk.

Jack:

So, Peggy, when Doug mentions he got a report from FISH and cytogenetics, which is essentially gobbledygook –

Peggy Lindley:

It is.

Jack:

What did you do when you got that?

Peggy Lindley:

They told me right off the bat that I had myeloma, and that I had an aggressive form. So, I went through the rounds, and I responded very well to induction therapy.

Jack:

And, by “aggressive form” – how did they find that?

Peggy Lindley:

They just said it was aggressive. They didn’t really – they said the FISH test – it was still Greek to me. So, now, two years later, I’m understanding it more and more, but what it was was the translocation of the 4-14. So, I find that, and I ask doctors about that, and they say, “Yes, it is aggressive, it’s on the aggressive form, but it’s still on the intermediate side.” So, I’m not as concerned, but at least the doctors know, and they’re aware.

Jack:

And, “4-14” means that chromosome 4 and chromosome 14 pieces have been swapped places?

Peggy Lindley:

I don’t really understand that yet, but I’m learning. That’s good, very good. See? I’ve learned something more.

Jack:

There you go. And, Nancy, you’ve been at this for a little while, so you probably understand a little bit more about genetic testing. What’s the impact been on you?

Nancy:

Well, I’m getting there, but it is – it’s a lot of alphabet soup. It’s hard to retain. But, yeah, I had genetic testing done right away once the myeloma became active, and I also had aggressive highrisk. I had abnormal female karyotype, monosomy 13, the P-53, and a translocation – but I forget which one. And, what was interesting is in my initial appointment with my oncologist, he thought I was low-risk and talked about treatment, but when all the final results came back, turned out I was high-risk, which meant completely different treatment. So, that was a shocker.

Jack:

So, expand on that a bit. How did that high risk change your treatment?

Nancy:

He recommended a clinical trial instead of what they were gonna put me in, which included being treated with carfilzomib, which, at the time – this was 2015 – carfilzomib was being used mostly for people who had relapsed, and they were doing a clinical trial to see about treating patients up front with it that are high-risk. Why wait until they relapse? So, I had that in addition to the PACE cocktail with thalidomide, something else – there were seven different chemos.

Jack:

So, that was important that that high risk for you helped determine a change for the treatment, but you got into that clinical trial, and that was an effective trial, by the way, so that’s good.

Nancy:

Yes. It was definitely effective for me.

Jack:

Good. And, George, when you did – or, you did genetic testing, I presume, and did it show anything?

George:

Yes. The first time we did it was to run tests to get ready for the first stem cell transplant, and at that time, I didn’t understand the importance of all that. The oncologist that I was working with at the time did explain as much as he could, and in layman’s terms as best he could, but it still mostly went over my head. I was more thinking about the actual transplant itself than anything else. But, when I came to MD Anderson and got ready for – I was getting ready to try one of their clinical trials, they ran some more tests then, just to see how things had progressed through that number of years, and so, I’ve actually had partially two of them.

Jack:

So, I was gonna ask – have any of you had subsequent genetic testing where results have changed after your treatment for myeloma? You’re nodding your head, Nancy.

Nancy:

Yeah. Over a year ago now, I had my genetics repeated, and all the abnormal stuff went away, so that was pretty exciting, because I was now MRD-negative, so that was very reassuring. And, I actually just had another bone marrow about 10 days ago now, so I’m still waiting for those results to see what’s happened.

Jack:

And, are they gonna test that bone marrow for genetics as well?

Nancy:

Yes.

Jack:

Because you might find there are changes. You might find there’s a translocation where there wasn’t one before, you might find there’s a deletion where there wasn’t one before, because this myeloma is a fairly tricky disease, and we talk about the myeloma clone as made up of a percentage of different mutations, some of which get cured by treatment, and others of which expand because they were not affected by the treatment. It’s pretty interesting, in a lousy sort of way. Anything else, Doug, that you thought was interesting that came out of your genetic testing?

Doug:

It looked pretty standard and fairly boring to people who liked exciting genetic testing. I did have two, so I had one – so, my original doctor says, “We like to get patients early to get an original profile.” That’s kind of like your baseline. And, I also had one right before my stem cell transplant because they like to check to see if anything happened, but the doctor says the chemo messes with myeloma – obviously, that’s why you have chemo – and he says, “You’ll probably see some differences, but that’s why we like an original one, too.”

So, I compared the two, and really, there were no extra risks – high risks or anything – that appeared. The only thing that popped up was instead of tetrasomies, I had trisomies also, but that was pretty much it. So, it didn’t really change anything in terms of treatment in terms of work that was being planned.

Jack:

And, tetra- and trisomies are basically quadruple and triple duplications of your chromosome. So, I’m wondering, both Peg and George, have you had a second MRD testing, and why did you end up doing that?

George:

I don’t know that we’ve had a second one. Have we?

Peg Burrell:

Yes.

George:

We have?

Jack:

Oh, you had MRD testing?

Peg Burrell:

Yes, I’m pretty sure we had. He was in a clinical trial in 2018 at MD Anderson, and I’m sure they did it then. They also did some very unusual – not normal, but they were genetic tests that they ran as part of the – at the beginning of this study so they could get a baseline, or find out what other things might be going on.

Jack:

And, he did this MRD trial testing to determine if he had a significant number of cells with this BCMA antigen in order to qualify for this CAR-T trial?

George:

Probably.

Peg Burrell:

In the beginning, yes. That was in 2012. And then, he had his – he was in a second trial that was called Amgen 224. That’s all we know. It’s a mystery. And, it worked for him for about a year. It brought his cancer numbers back down, and there was a lot of genetic testing for that particular trial.

Jack:

So, I think just about any of these new trials that are coming onboard these days incorporate MRD testing. As we all heard earlier and we know, MRD is a really good prognosticating factor in terms of if a patient becomes MRD-negative, they show that they have better progression-free survival and overall survival. It’s not really used to change or determine treatment, but those trials are going on as well, so I think that’s really important.

And, there’s so many other avenues – again, back to this genetic testing, I always wonder, well, suppose I’m MRD-negative, but I’m high-risk, versus I’m MRD-positive but I’m standard-risk. Which is better? I don’t know. I don’t think the community knows, and I think it may be individualized as well. What do you all think about that? Any feelings?

George:

For me, I think that’s probably what is gonna be revealed to us as we move forward with this because the genetic testing idea is fairly new, at least to the patient. I’m sure that the doctors could pull each and every one of our files and show us all sorts of information that they just haven’t shared with us because of – it can be kind of complicated and hard to understand. Sometimes, I think that they try not to give us too much information because then, we have a tendency to think we can get on the computer and try to diagnose ourselves or find something.

Jack:

Little Rock, Arkansas was kind of the pioneer in what’s called gene expression profiling. And, we all have 25,000 genes, let’s say, and Arkansas kind of developed a test which showed that there were about 70 genes that were very distinctive in resulting in high-risk myeloma, except they were distinctive across, say, 50 percent of patients, but not the other 50 percent of patients. And then, they tried to get it down to even 15 or 25 genes, let’s say, and therefore, it was less accurate.

So, I think you’re right, George. I think there’s still a lot of work that’s gonna be done in this area to make it something that really can be useful in terms of having the best treatment for patients. There’s an interesting trial going on right now that’s looking at treating myeloma patients according to a mutation. If we have a certain mutation and we have a drug to treat that mutation – it could be for a different cancer – then that patient will be given a baseline of treatment plus that drug to try to increase the amount of precision therapy that’s given for given patients.

So, this whole area of genetic testing, as I see it, is really fascinating, complex, difficult to understand at the patient level, but can mean a lot for us as we go forward. What do you think? Peggy, I think you’re the most newly diagnosed patient here. What does all this mean for you?

Peggy Lindley:

I think his analogy of the alphabet soup is exactly right because when I looked at mine, I was like, “Those are words? Yeah, no.” But, I tried not to worry about it because I figured I was going to the best when I came to MD Anderson, so I really didn’t worry about it too much because I figured it’s gonna be what it’s gonna be, and I wanna – the quality of life is what I’m looking for.

Jack:

Well, I think you’re really correct there. The fact that you’re going to MD Anderson, the fact that we are getting second opinions from myeloma specialists who have a much better shot at understanding this stuff than we do is really key to long-term treatment success for us. There are a lot of drugs out there. In fact, I’ll often tell patients when I was diagnosed in ’95, there weren’t many treatment options. Today, the good news is there are lots of treatment options, but the bad news is there are lots of treatment options. You really don’t know what’s best for you, and that’s why it’s so important to have a myeloma specialist on your side.

George:

Well, with that, the idea of being able to target certain things within myeloma is gonna be a big step forward, I think, because it’ll help eliminate some of the things – the trials that we might try, or have to make a decision – “Do we try this or not?” We’ll be able to say, “This didn’t work, so this will – let’s try this.”

Jack:

Yeah. There’s a drug called venetoclax, which has been shown to be effective in myeloma patients with a certain mutation – 11-14 – and it’s in trials now to hopefully, one day, get approved for that class of patients.

Doug:

One of the things I’d probably add to the discussion is there’s a lot of talk about patient advocacy, and if you follow any of the myeloma discussions, it is almost all genetics now. That’s kind of where cancer research has gone, even in other cancers. But, one of the things that I see genetic testing is doing is my ability to help the doctor help me.

So, if it was more difficult to get genetic testing – maybe not local to a major facility or something – I would still encourage it because that’s helping the doctor see your specific disease, and maybe helping them modify what you have as a standard treatment in terms of what you need instead of the standard treatment. Plus, you have it in the bank then. You have your test, and if something is discovered a year from now, that this particular drug works with this particular genetic profile, you can go back, and look, and say, “Do I have that? Is that something I should consider?”

Jack:

Good point. Nancy, how important do you think it is for patients to 1) Insist that they get some type of genetic testing, and 2) to try to understand what’s going on?

Nancy:

Well, I think it’s extremely important. For me, it was a major change in treatment. Without genetic testing, I doubt I would be MRD-negative right now because my treatment path went along a completely different way. So, I think it’s extremely important. What was the second part of your question?

Jack:

How important it is for the patient to understand it.

Nancy:

I think everybody has a different level of what they can understand, and that it’s important for your oncologist to give you that information in language that you can understand, and to the level that you want. A lot of that’s gonna depend on your background, your education, what makes sense to you. I came from a medical background, so I wanted a little more knowledge, and my doctor was great in giving that to me.

Jack:

Patients need to ask questions.

Nancy:

Yes, they definitely need to ask questions, and then, the physician needs to communicate in a way that the patient’s gonna understand because it is a lot of gobbledygook, and I often – I have a hard time understanding it with having a medical background, and I often wonder how you make sense of this without having a background. It’s difficult.

Jack:

This has been a good discussion, and I think we’ll wrap it up. Peg, maybe I’ll start with you. Folks listening to this discussion – what do you think they should take away from it?

Peg Burrell:

Well, definitely, talk your physician, learn as much as you can. Support group for us has been very beneficial and helpful. Our support group brings in different people in the medical profession and has explained a lot of the things and given us knowledge we wouldn’t have had otherwise. And then, working with – sometimes, insurance may not wanna pay for certain tests. I’ve found that in working with MD Anderson, their financial people – we had some tests that were gonna be – I think they said “non-concerted.” I’d not heard that before. It basically meant they were questioning the test and whether or not it was necessary. So, MD Anderson was very helpful with that.

Jack:

George, can you add on to what your better half says?

George:

For me, it’s been working closely with Dr. Patel and her team, both when I was part of the clinical trial and even now, with the three-track regimen that they have me on. Again, ask questions, try to understand as much as you can, and I, too, support the idea of working with a support group and sharing information with each other because you find out so much more of what someone else heard through their doctor and their team because we all do have different doctors.

Jack:

Nancy?

Nancy:

I think it’s real important for people to go to a center of excellence, at least for a second opinion, if not for your treatment. They are the cutting-edge people that are gonna be able to treat you the best, and you can just google “center of excellence, multiple myeloma,” and you’ll get a list of all the centers all across the United States. I think it’s made a huge difference. I was treated at UAMS in Little Rock, and I wouldn’t have had it any other way. I was fortunate to be able to go there.

Jack:

Good. Peggy?

Peggy Lindley:

I think as patients, we all need to be as informed as you can, and work with your doctor, and get confidence in your doctor. If that doctor doesn’t do it for you, find another one, but be confident in your doctor that they’re gonna do what’s right for you, but you have to be educated as well.

Jack:

I heartily agree. Doug?

Doug:

I’d stress the same as everyone else, and also recommend definitely having genetic testing. One of the things that are kind of an intangible benefit is even your own stress level. You would think that, for instance, if you’re tested and you find out you’re not high-risk, you’re standard-risk, that’d be the end of it, but it turns out, for instance, even with me, my doctors will actually modify – have modified my treatments, even my maintenance treatments, because I’m not high-risk and I have very stable myeloma.

So, they’ll say, “Well, we’re going to de-escalate. We’re gonna take you off all these drugs. You don’t need all of them, so we don’t wanna over-treat, either.” Nobody wants to be over-treated with all the symptoms and things like that. When they initially said that, I was like, “Wait a minute, I’d rather just start adding drugs. Let’s just kill this thing.” But, that’s right, and I think the fact that I can go back to genetic testing and look at what he was saying about stability over a period of years and things like that just gives me more of a comfort level that that’s probably the right answer, and I don’t need to be taking all these drugs if they’re not gonna benefit me in the long term, or I could switch drugs if I need to.

Jack:

So, I guess I’d summarize it by thanking you all. You’re all terrific examples of being your own best patient advocate. If we aren’t advocating for ourselves, who else should? It’s really up to us, and the good news is there are so many resources for good information out there.


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

AML Treatment Options: What’s Available?

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

Dr. Jessica Altman reviews currently available treatments for acute myeloid leukemia (AML), including chemotherapy, stem cell transplant, and clinical trials.

Dr. Jessica Altman is Director of the Acute Leukemia Program at Robert H. Lurie Comprehensive Cancer Center of Northwestern University. More about Dr. Altman here.

See More From The Fact or Fiction? AML Series


Related Resources

 

Fact or Fiction? AML Treatment and Side Effects Resource Guide

 

What Causes a Gene Mutation?

 

Can AML Be Cured?


Transcript:

Patricia:                         

Dr. Altman, let’s talk a little bit right now about treatments that are currently available for AML. What kinds of things might patients want to familiarize themselves with?

Dr. Jessica Altman:    

So, we are at a point in AML therapy where there’s not just one choice of treatment.

There are a number of choices that depend on patient characteristics, disease characteristics, and patient goals. So, there’s a lot that the physician with their patient and family members take into account and consider when they’re coming up with a therapeutic strategy.

Patricia:          

So, give us a couple of examples. Chemotherapy is one way to treat AML, correct?

Dr. Jessica Altman:    

Correct. So, the treatments all stem from a chemotherapy backbone. And there are more intensive chemotherapy regimens that usually involve a long, in-patient hospitalization and less intensive chemotherapy regimens. Those chemotherapy regimens can sometimes be combined with targeted therapy based on the genomic structure or the mutations present in leukemia cells. 

Patricia:          

Stem cell transplant is also an option as well?

Dr. Jessica Altman:                

Stem cell transplant is an option that is utilized ideally after the leukemia is in remission as a way of maintaining disease control.

And for some patients, that is the best approach for a curative option, and some patients’ leukemia does not require a stem cell transplant.

Patricia:          

Clinical trials available as well for AML, doctor?

Dr. Jessica Altman:    

So, we feel very strongly that the best treatment strategy for most patients is a well-designed, appropriate clinical trial for all phases of AML therapy. It’s because of research and clinical trials over the last number of years that we have had advances and more approvals for the treatments of Acute Myeloid Leukemia.

How is an AML Treatment Approach Determined?

How is an AML Treatment Approach Determined? from Patient Empowerment Network on Vimeo.

 AML expert, Dr. Jessica Altman, discusses the factors she considers when making treatment decisions for patients. Want to learn more? Download the Program Resource Guide here.

Dr. Jessica Altman is Director of the Acute Leukemia Program at Robert H. Lurie Comprehensive Cancer Center of Northwestern University.

See More From The Fact or Fiction? AML Series


Related Resources

 Why Should Patients Be Hopeful About AML Treatment Options?  Office Visit Planner  Can AML Be Cured?

Transcript:

Patricia:     

So, when you’re talking with your patients, what kind of things are you considering when determining how to best treat AML?

Dr. Jessica Altman:    

So, that’s a great question. This is something that is the basis for the entire conversation that I have with my patients and their family members. 

I consider patient goals and patient fitness, other medical conditions, and a lot about the biology of the leukemia. If someone has an acute leukemia that is expected to be highly sensitive to intensive chemotherapy, then that is something that we want to think about. Versus if the patient has a disease that is not expected to be as sensitive to intensive chemotherapy, we frequently like to consider other alternatives in that space.

Patricia:     

So, in terms of options, as a patient what kind of things should I be thinking about when I’m working with you as my doctor about what the best treatment for me might be going forward?

Dr. Jessica Altman:    

So, I think the goal of the initial meetings and the initial consultation between a patient and their healthcare provider is to explore those things. We take a detailed history, understanding patients’ other medical issues. In addition to that, the social history and patients’ goals are very important, as things are not always a yes or no.  

They’re not dichotomous choices. And to be able to understand a patient’s goals, and for the healthcare provider to be able to explain what the intent of treatment is helps both parties come to the right decision for that individual patient.

Relapsed and Refractory Multiple Myeloma: What’s the Difference?

Relapsed and Refractory Multiple Myeloma: What’s the Difference? from Patient Empowerment Network on Vimeo.

Dr. Peter Forsberg defines relapsed and refractory myeloma, terms often used when discussing myeloma, but not always explained.

Dr. Peter Forsberg is assistant professor of medicine at the University of Colorado School of Medicine and is a specialist in multiple myeloma. More about Dr. Forsberg here.

See More From The Pro-Active Myeloma Patient Toolkit

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Overwhelmed By a Myeloma Diagnosis? The Key Steps to Take

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Find Your Voice Myeloma Resource Guide

Transcript:

So, I think that in differentiating relapsed and refractory multiple myeloma, they sometimes get lumped together and you might say relapsed and refractory myeloma. And that’s partly because that’s groups of patients who are included in the same clinical trials or different things like that.  But they are different things. A patient who is relapsed may have been off treatment for a substantial amount of time before they relapsed. A patient with refractory multiple myeloma, they may be refractory to just one type of medicine.

You may be refractory just to lenalidomide if you’re myeloma progressed or relapsed while you were taking it, or it may mean that you have not responded very substantially to any of the medicines you have received so far. So, there are different categories even within refractory myeloma. Whether it’s just to one or multiple different medicines, or if it’s more broad where we’re having a hard time getting a response with even different combinations.

Overwhelmed By a Myeloma Diagnosis? The Key Steps to Take

Overwhelmed By a Myeloma Diagnosis? The Key Steps to Take from Patient Empowerment Network on Vimeo.

A myeloma diagnosis can be overwhelming and, in some cases, patients and caregivers may feel frantic or scared. Dr. Forsberg outlines clear steps to approaching a myeloma diagnosis. Want to learn more? Download the Find Your Voice Resource Guide here.

Dr. Peter Forsberg is assistant professor of medicine at the University of Colorado School of Medicine and is a specialist in multiple myeloma. More about Dr. Forsberg here.

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources

    

Diagnosed with Myeloma? An Advocate’s Key Advice

    

Discussing Treatment with Your Doctor: Key Questions to Ask

Office Visit Planner

Transcript:

Dr. Peter Forsberg:    

I think being diagnosed with myeloma can be a big shock, so I think the first step is to sort of take a beat and work on getting the logistics of care lined up. I think the first thing you want to do is make sure you have a care team in place you’re comfortable with. That means support from friends and family. It also means providers you’re comfortable with. Usually you’re diagnosed by an oncologist and hopefully that’s somebody that you already feel a good comfortable relationship with.

I always think it’s worthwhile to consider getting a second opinion, another voice. And that could be even if you’re diagnosed at the most high-power academic center in the country, or whether it’s in a more community-type setting. I think having another voice just to make sure everything makes sense, that it seems fairly consistent, and that you understand things as thoroughly as you can. But you do want to get the ball rolling in terms of making a care plan and moving towards therapy if that’s the next step, without taking too much time.

So, I think it’s kind of a balance between making sure you’re really comfortable with all the participants in your care team, whether that’s one or more physicians if you have a primary and somebody else who helps to consult or guide as a more specialized voice. But also balancing that with moving towards the next steps in your treatment because often it is fairly time-sensitive to get going with management of the myeloma.

I think that the initial conversation can be a pretty complicated one. It’s one where we want to take plenty of time to work through a variety of different questions. I think some of the most important questions can be fairly open-ended ones. Ones that sort of help to take the conversation to maybe more broad areas. So, asking things like why. Is there a specific reason why we’re choosing this approach? What are the goals for our treatments?

So that everybody can try to get on the same page in terms of understanding what the rationale is, maybe making sure that nobody is missing anything in terms of what a patient’s goal is and that those are in line with the providers and that those priorities are understood.

I also think it’s important to ask pretty specific questions. I think lots of patients are pretty good about that in terms of trying to nail down expectations for logistics of medicines, things that we should expect as we start with treatments. So, I think it’s a balance between making sure we get into those fine-tuned details as well as taking a step back and asking those broad questions so that everyone can make sure that they’re seeing things in a similar way.