Multiple Myeloma Archives

Plasma cells are cells in the immune system that make antibodies, which help the body fight infection and disease. Multiple myeloma cells are abnormal plasma cells (a type of white blood cell) that build up in the bone marrow and form tumors in many bones of the body.

More resources for Multiple Myeloma from Patient Empowerment Network.

How Is a Myeloma Patient in Active Treatment Monitored?

How Is a Myeloma Patient in Active Treatment Monitored?  from Patient Empowerment Network on Vimeo.

Dr. Melissa Alsina, of Moffitt Cancer Center, explains how myeloma patients are monitored once treatment has begun.

Dr. Melissa Alsina is an associate professor of medicine in the Blood and Marrow Transplant Program at Moffitt Cancer Center in Tampa, Florida where she also serves as head of the Multiple Myeloma Transplant Program. Learn more about Dr. Alsina, here.

See More from Engaging in Myeloma Treatment Decisions

Related Resources:

Expert Advice for Newly Diagnosed Myeloma Patients

The Role of a Myeloma Specialist on Your Care Team

Relapsed and Refractory Myeloma Defined

Transcript:

Katherine:                  

When a patient is in active myeloma treatment, how are they monitored?

Dr. Alsina:                 

So, myeloma is actually a disease that has really good markers, because the cells that cause myeloma are called plasma cells. These cells are part of our immune system, and their normal function is to produce antibodies, which is a type of protein, and these proteins we can measure in the blood or in the urine of the patients. So, when a patient is diagnosed, we would say, “Okay, you have IgG kappa myeloma,” for example. IgG is a type of antibody. This antibody is what we call immunoglobulins, the more fancy name for antibodies, and we abbreviate that like “Ig,” and then we name them by letters, like IgG, IgA.

Katherine:                  

I see.

Dr. Alsina:                 

So, when a patient is diagnosed, I am able to check out the blood and see what is the type of antibody that has been secreted by the particular patient’s myeloma cells, and that would tell me the type of myeloma the patient has. So, if the patient has, for example, IgG kappa myeloma, then I can follow that IgG after the patient gets therapy, and also the kappa light chain, and I would know if the treatment is working or not because if the treatment is working, the levels of those proteins should go down.

There’s some more fancy – another test that we do that is called serum protein electrophoresis that gives us the monoclonal protein, or the M-spike, and that is very exact. That tells me exactly what is the amount of protein secreted by the myeloma cells, and I can measure that, and that’s how we measure response. We say if the M-spike drops by more than 50 percent, the patient has a partial response, if it drops by more than 90 percent, the patient has a very good partial response, and if the M-spike goes away completely, that is a complete response or complete remission, which is the goal of therapy.

What Are the Risks of CAR T-Cell Therapy?

What Are the Risks of CAR T-Cell Therapy?  from Patient Empowerment Network on Vimeo.

Dr. Melissa Alsina, a myeloma expert from Moffitt Cancer Center, reviews the potential side effects of CAR T-cell therapy for myeloma patients, and discusses how these side effects may be managed.

Dr. Melissa Alsina is an associate professor of medicine in the Blood and Marrow Transplant Program at Moffitt Cancer Center in Tampa, Florida where she also serves as head of the Multiple Myeloma Transplant Program. Learn more about Dr. Alsina, here.

See More from Innovative Myeloma Therapies

Related Resources:

Myeloma Research | CAR-T Cell & Bispecifics Study Updates

Myeloma Research | CAR-T Cell & Bispecifics Study Updates

How Is CAR T-Cell Therapy Changing the Myeloma Treatment Landscape?

How Is CAR T-Cell Therapy Changing the Myeloma Treatment Landscape?

What Are Common Myeloma Treatment Side Effects?

Transcript:

Katherine:

What are the risks of CAR T-cell therapy? 

Dr. Alsina:

So, in myeloma, it is, in general, pretty safe. There are two main – well, actually, I would say three main side effects that we can see with CAR-T. Number one is called cytokine release syndrome, and we are getting these cells from the patient’s immune systems, sending them a lab to be manufactured so that they can recognize this protein, BCMA, in the myeloma cells. 

And then, those cells are grown, so essentially, what we’re doing is that we’re taking the immune system of the patient, and we’re making it very specific against the myeloma cell. And then we’re growing it, so we’re making a hyperactive immune system, and then giving it back to the patient. And then, those cells, they are going to go ahead and react against the myeloma cells and start killing the myeloma cells, and in doing that, that reaction, that immune reaction will elicit release of a lot of proteins – cytokines – and that can cause side effects. 

When that happens, that is called cytokine release syndrome, and the most common finding with that is a fever. Patients can have a high fever. And then, it varies depending on the CAR-T that the patients are getting. So, for example, with this Abecma, usually, the reaction happens right away after you get the cells – the next day, so that’s why these patients, we admit them to the hospital because we know that this cytokine release syndrome is going to happen right away.  

And, it could be just a fever. In the majority of the patients, it happens like this, is just a fever, but it may be about 20 percent of the patients, that reaction can be more severe, and it could be a fever with low blood pressure or shortness of breath, and it could be a fatal complication, but that’s very, very rare.  

And we know – we can identify, obviously, when it’s happening, and there’s a medication that we can give to actually sort of counteract that reaction and don’t let it progress, and in the majority of the patients, that works quite well.  

Katherine:

What other side effects are there for CAR T-cell therapy? 

Dr. Alsina:

Yeah, so besides the main one that I discussed, cytokine release syndrome, the other thing that could happen is neurotoxicity, meaning that T cells can actually cross to the brain and cause toxicity in the brain, and depending on the type of CAR-T that the patient is getting, it could be less or more risk.  

But essentially, what could happen is that the patient could have some aphasia, like for example, difficulty finding words. It could also be just a headache. Patients could have seizures, so we do give the patients medication to prevent seizures while they are undergoing CAR-T. 

They can have difficulty writing, so we make every patient write a sentence every day to make sure that’s not being affected. And we do a mini mental status every day. Every day, we’ll go see the patient and ask them 10 different questions, like “Where are you? What day is it? Who’s the president?”, we show them an object, and so on so we can monitor these things very closely. If we see any changes, then we can intervene. Usually, for neurotoxicity, we give steroids. 

The good news, though, is that this is very rare. With Abecma, it’s very rare that a patient would have severe neurotoxicity. With ciltacabtagene autoleucel (Carvykti), which is the one that was approved more recently, from 100 patients that were treated, there were five patients that had this delayed neurotoxicity, some of them with movement disorders, like Parkinson’s-like systems, and these were delayed. These didn’t happen in the first few weeks. 

But we learned what are the risks associated with these, the majority of the patients that have very high tumor burden, so what we do is that we monitor the patients very closely, especially the patients with high tumor burden. The ideal situation is that we can control the disease a little bit better before taking them to CAR-T, but even when that’s not possible, what we do is that we intervene early on if we see that these patients are getting any side effects and being more aggressive with the intervention. 

And then, the third, more important side effect is these CAR-T cells can prevent blood counts to recover. For CAR-T, we give chemotherapy.  

That would allow the T cells to expand, and this chemotherapy can drop the blood counts, but usually, they recover quickly, but in some patients, this recovery doesn’t happen quickly, and patients can have low counts for months, and obviously, that would bring increased risk of infection. 

So, that is a potential complication, especially in patients that have received a lot of prior therapies, and it’s not common that a patient would take a long time, but it could happen, and sometimes, occasionally, we’ve had to give these patients a stem cell boost from stem cells that we have stored to actually make their counts recover. So, those are essentially the three most common complications, but in general, it’s a treatment that is well tolerated and very manageable, and I can tell you the majority of the patients that I’ve treated, they’ve said this is easier than a transplant.  

How Is CAR T-Cell Therapy Changing the Myeloma Treatment Landscape?

How Is CAR T-Cell Therapy Changing the Myeloma Treatment Landscape?  from Patient Empowerment Network on Vimeo.

Myeloma expert Dr. Melissa Alsina discusses the evolution of myeloma treatment over the past several years, including an explanation of the two FDA-approved CAR T-cell therapies available for myeloma patients.

Dr. Melissa Alsina is an associate professor of medicine in the Blood and Marrow Transplant Program at Moffitt Cancer Center in Tampa, Florida where she also serves as head of the Multiple Myeloma Transplant Program. Learn more about Dr. Alsina, here.

See More from Innovative Myeloma Therapies

Related Resources:

What Are the Risks of CAR T-Cell Therapy?

Is It Too Late for a Myeloma Second Opinion?

Is It Too Late for a Myeloma Second Opinion?

 
How Long Will Myeloma Maintenance Therapy Last?

Transcript:

Katherine:

I’d like to start by talking about innovations in myeloma therapy. How have treatment options for myeloma evolved over the past several years? 

Dr. Alsina:

Yeah, well, the easy answer to that is dramatically. It’s really amazing, the number of advances that we’ve had in the treatment. When I think 20 to 25 years ago, we had two drugs for myeloma, rare opportunity to get any patient in complete remission. 

And now, we have many, many drugs, we continue to have bone marrow transplants, now we have CAR-T cellular immunotherapies, and able to get patients – over 80 percent of the patients in remission up front, and even in the relapse setting, many of them with CAR-T, for example. One of the CAR-Ts is able to get 80 percent of the patients in remission, so it’s really incredible, the amount of advances. 

Katherine:

Yeah. How is CAR T-cell therapy changing the field? 

Dr. Alsina:

So, we – probably everyone knows that there have been two CAR-T products approved for myeloma in the past year. We’re not doing as good as the lymphoma group. Those were the first CAR-T cells, were approved for lymphoma/leukemia, and for those patients with lymphoma and leukemia, there’s an opportunity for a cure, whereas in myeloma, in the setting that we’re using CAR-T right now, which is for patients that have failed multiple lines of therapy, at least four prior lines of therapy, those patients are not cured.   

Katherine:

Yeah. You mentioned that there are two CAR T-cell therapies available right now for myeloma patients. What are they? 

Dr. Alsina:

So, the first one, that was approved in March of last year the commercial name is Abecma. This is made by a company that is called BMS. It targets BCMA, which is B-cell maturation antigen, which is the protein that is preferentially expressed in the myeloma cells, so it’s a really good target for myeloma, and this is the one that studies show that we get response rates at about 75 to 80 percent with remission rates about 40 percent, and in the real world, since Abecma was approved, we’ve treated many patients – at Moffitt, actually, I think we have the largest number in the whole United States, close to 60 patients, and we’re seeing the same.  

So, really, when we translate that to the real world, we’re seeing the same results, and I would argue that perhaps better because the patients that go on trial are very selective patients – they need to have good counts, they cannot have renal insufficiency, all this different criteria, and actually, when we looked at it, we found that 71 percent of the patients that we treated in the real world with Abecma would not have been eligible for trial, but yet, we’re getting the same results – the same results in terms of efficacy and the same results in terms of safety.  

Katherine:

What is the second CAR T-cell therapy available? 

Dr. Alsina:

The second CAR-T was approved just recently, in February of this year, and that is cilta-cel. The commercial name for this is Carvykti, and this one, we do not have a lot of real-world experience because the manufacture and availability of the product is still very limited, so we only have been able to do two patients per month with Carvykti. However, the studies show this agent to be extremely effective, with response rates close to 100 percent and a complete remission rate of 80 percent, which is… 

Katherine:

That’s phenomenal. 

Dr. Alsina:

Right? It’s phenomenal for this patient population. So, we’re definitely very excited with this. I think a major issue with CAR-T that you may or may not have heard – I’m pretty sure all the patients are aware of this, but it’s the availability. When these products are approved, because these products have to be manufactured from the patient cells, the companies cannot release – cannot meet the demand, so there are a lot more patients that need CAR-T than product availability.  

So, we have a waiting list, and this is true for all centers. With the first product, with ide-cel/Abecma, now, at least, in our center, we have been able to catch up a little bit. We’re getting about eight slots per month, so it’s a significant amount. We still are not able to offer it to every single patient that needs it at the moment, but we’re doing much better than the beginning. 

As I mentioned before, with Carvykti, it’s still a significant challenge, and again, we’re getting maybe one or two slots per month. Talking with these companies, they expect that is going to improve by early next year, so we’re keeping our fingers crossed because right now – and this is true for us and many myeloma centers – we have over 100 patients in the waiting list. 

But in any case, even with that, I would encourage any patient that needs CAR-T to go to a center because even though we have a long list, for example, some of those patients that are on the list, they don’t need CAR-T right now, so it doesn’t mean that 120 patients on the list need CAR-T at the moment. So, we normally would go down the list according to when we saw the patient, and then the needs of the patient at the moment that we have a slot, and that’s how we make our selection. 

So, the ideal situation is the patient seeks a CAR-T consult early on. Don’t wait until you have failed four therapies to go. When you start your third line of therapy, go, because then you get on the list. By the time you really need it and are eligible to get it, then it might be accessible to you. 

Considering Joining a Myeloma Clinical Trial? Questions to Ask Your Healthcare Team.

Considering Joining a Myeloma Clinical Trial? Questions to Ask Your Healthcare Team.  from Patient Empowerment Network on Vimeo.

Considering participation in a clinical trial can bring up a lot of questions. Myeloma expert Dr. Melissa Alsina shares advice and key questions patients should ask their healthcare team before joining a myeloma clinical trial.

Dr. Melissa Alsina is an associate professor of medicine in the Blood and Marrow Transplant Program at Moffitt Cancer Center in Tampa, Florida where she also serves as head of the Multiple Myeloma Transplant Program. Learn more about Dr. Alsina, here.

See More from Myeloma Clinical Trials 201

Related Programs:

 
Understanding the Role of Clinical Trials As a Myeloma Treatment Option

Understanding the Role of Clinical Trials As a Myeloma Treatment Option

Defining the Myeloma Patient Role in Their Care

Defining the Myeloma Patient Role in Their Care

Myeloma Treatment & Research Updates From 2022 ASCO and EHA Meetings

Myeloma Treatment & Research Updates From 2022 ASCO and EHA Meetings 


Transcript:

Katherine:

When a patient is considering participating in a clinical trial, what sorts of questions should they ask their healthcare team? 

Dr. Alsina:

I think the number one thing is “How can this help me? What is the potential for this treatment?” The other very important thing is “What are the potential side effects? Has this been done before in other patients? Do you have any experience? What do you think are going to be the side effects or additional risk compared to getting the standard of care?” 

And then, I think the third thing is “How much commitment do you need from me?” Because there is no doubt that clinical trials require a lot of commitment. When we are doing a clinical trial, we, for example, have to give all the drugs in the center, usually. Let’s say I’m testing Revlimid (lenalidomide), Velcade (bortezomib), and dexamethasone (Decadron) followed by CAR-T, for example in patients with high-risk myeloma. That’s one of the studies. 

Yeah, you could get Revlimid, Velcade, and dexamethasone anywhere. Those are approved drugs. But if you are participating in a clinical trial, you have to get it at Moffitt or at the center, which means patients traveling back and forth, so that is very important because it requires a lot of commitment from the patients. And I think, on that line also, you can ask as a patient, “Well, what are the resources there in the clinical trial that can help me make that commitment?” 

Frequently, clinical trials help patients by paying for their transportation, their gas, their accommodations if they have to stay overnight, to be able to comply and meet all those different visits.  

Understanding the Role of Clinical Trials As a Myeloma Treatment Option

Understanding the Role of Clinical Trials As a Myeloma Treatment Option from Patient Empowerment Network on Vimeo.

When it comes to myeloma treatment options, where do clinical trials fit in? Dr. Melissa Alsina of Moffitt Cancer Center discusses the role of clinical trials in a myeloma treatment plan at every stage of a patient’s care.

Dr. Melissa Alsina is an associate professor of medicine in the Blood and Marrow Transplant Program at Moffitt Cancer Center in Tampa, Florida where she also serves as head of the Multiple Myeloma Transplant Program. Learn more about Dr. Alsina, here.

See More from Myeloma Clinical Trials 201

Related Programs:

 
Considering Joining a Myeloma Clinical Trial? Questions to Ask Your Healthcare Team.

Considering Joining a Myeloma Clinical Trial? Questions to Ask Your Healthcare Team.

Is It Too Late for a Myeloma Second Opinion?

Is It Too Late for a Myeloma Second Opinion?

Myeloma Treatment & Research Updates From 2022 ASCO and EHA Meetings

Myeloma Treatment & Research Updates From 2022 ASCO and EHA Meetings 


Transcript:

Katherine:

When it comes to myeloma treatment options, where do clinical trials fit in? 

Dr. Alsina:

They fit everywhere, essentially. They fit everywhere because myeloma – even though we have many, many advances, it’s a disease that we cannot cure, so there’s still a lot, a lot of work to do, so we have trials for newly diagnosed patients, improving what we do at newly diagnosed, bringing in some of those therapies, for example, like CAR-T up front, and then we have trials for early relapse/late relapse, because again, yeah, we’ve done a lot and we feel very encouraged by that, but we’re short because we have not been able to cure myeloma. 

So, it’s super important, and it’s super important that patients reach out to myeloma centers to see what is available for them because participating in a clinical trial, number one, gives a patient a unique opportunity to get something more than standard of care, something that might make their response better or their survival better.  

That’s one thing, and the other thing is the only way we’re able to move the field forward is doing clinical trials and having patients participating in clinical trials, and the reason today I can sit here and tell you that the treatment of myeloma has evolved dramatically in the last 20 years, and now we have these responses that are amazing that were unheard of, is thanks to the many patients that have participated in clinical trials. 

Without that, obviously, we would not be here with these results. But that needs to continue. I think we cannot rest because there are still patients that die from myeloma. We cannot lose the perspective that this is still an incurable disease and there’s still a lot of work to do, and the only way to get there is to continue doing the research. 

Katherine:

It sounds like clinical trials are also available for patients who have already been treated with another therapy. Is that right? 

Dr. Alsina:

Absolutely. Clinical trials are available for all the different stages of the disease – when you are newly diagnosed, when you have your first relapse, when you have your second relapse.  

Katherine:

Anytime through the process. 

Dr. Alsina:

Anytime, anytime, and there are clinical trials – the clinical trials not only help us test new drugs or new combinations of drugs, but it also helped us understand the disease better. The majority of clinical trials, we do what we call correlative studies, where we get a sample of the patient, the bone marrow of the patient, for example, before and after therapy, and we see what are the changes that we see there and what are the genes that dictate that response or lack of response. 

So, clinical trials not only help us improve outcomes in patients, but it also helps us understand the disease better that leads to other new therapies and other clinical advances. This can translate into new clinical advances 

Understanding MRD and What It Means for Myeloma Patients

Understanding MRD and What It Means for Myeloma Patients  from Patient Empowerment Network on Vimeo.

Myeloma expert Dr. Melissa Alsina, of Moffitt Cancer Center, provides an explanation of minimal residual disease (MRD) and how she uses MRD in patient care.

Dr. Melissa Alsina is an associate professor of medicine in the Blood and Marrow Transplant Program at Moffitt Cancer Center in Tampa, Florida where she also serves as head of the Multiple Myeloma Transplant Program. Learn more about Dr. Alsina, here.

See More From INSIST! Myeloma

Related Programs:

Myeloma Research | CAR-T Cell & Bispecifics Study Updates

Myeloma Research | CAR-T Cell & Bispecifics Study Updates

How to Thrive and Set Myeloma Treatment Goals

How to Thrive and Set Myeloma Treatment Goals

Key Factors That Guide Myeloma Treatment Decisions

Key Factors That Guide Myeloma Treatment Decisions


Transcript:

Katherine:

What is MRD, and what does it mean for patients? 

Dr. Alsina:

So, MRD stands for minimal residual disease. So, it means that if a patient is in complete remission, what it would mean is that I don’t see any myeloma cells in the bone marrow and I don’t see an M spike. The M-spike is zero in the blood and in the urine, and the light chains are fine.  

But even with that, there maybe be some disease that is residual that I can’t see by conventional methods, so there’s two methods that have been developed that are able to detect one cancer cell in a million cells. 

Katherine:

Wow. 

Dr. Alsina:

So, if I have a patient that is in complete remission, I can use one of those methods to look, and that will tell me if the patient still has minimal residual disease or not. 

So, the reason why it is important is because there are many studies that have shown that if I can get a patient to be minimal-residual-disease-negative, no evidence of disease by those two tests – that I can explain a little bit more if you want – then those patients are going to do better, their response is going to last longer, and the patients are going to live longer. 

So, nowadays, with our better treatments, we use also that as a goal. We say okay, I not only want to get a patient in a complete remission, I want to get that patient to MRD negativity.  

And we do adjust our therapy to get there. As an example, I can do a transplant in a patient, and three months after transplant, I look at that minimal residual disease. If it’s negative, then I do Revlimid (lenalidomide) maintenance, which would be standard of care. If it’s positive, I use two drugs to try to get that patient to that MRD-negativity level, and there are many studies right now looking at how to adjust our treatment based on response. 

How Do Test Results Impact Myeloma Treatment Options?

How Do Test Results Impact Myeloma Treatment Options?  from Patient Empowerment Network on Vimeo.

Myeloma expert Dr. Melissa Alsina reviews the test results that are taken into consideration when choosing a treatment approach for patients.

Dr. Melissa Alsina is an associate professor of medicine in the Blood and Marrow Transplant Program at Moffitt Cancer Center in Tampa, Florida where she also serves as head of the Multiple Myeloma Transplant Program. Learn more about Dr. Alsina, here.

See More From INSIST! Myeloma

Related Programs:

 
How Is a Myeloma Patient in Active Treatment Monitored?

How Is a Myeloma Patient in Active Treatment Monitored?

Understanding MRD and What It Means for Myeloma Patients

Understanding MRD and What It Means for Myeloma Patients

Key Factors That Guide Myeloma Treatment Decisions

Key Factors That Guide Myeloma Treatment Decisions


Transcript:

Katherine:

We know that patients undergo testing when diagnosed. How do test results affect treatment choices? 

Dr. Alsina:

So, in general, we do a bone marrow, we check for the genetics of the myeloma cells, see what are the genes that are affected in the myeloma cells, and that helps us define myeloma as high-risk or standard-risk, and that can help us decide what treatment we want to give these patients. Unfortunately, it’s not totally well defined. 

I wish we could use that in a better way and there are drugs that could really target, but there is some information. We know, for example, that proteasome inhibitors are important for patients with high-risk myeloma, so we definitely try to include that in a patient that is high-risk, and the other thing is that patients that are high-risk, it’s even more important to get to that remission, so we’re going to push treatment to get there, treat these patients a little bit more aggressively. 

Other than that, depending on, for example, what are the blood counts – some patients have a lot of bone marrow involvement and their blood counts are very low. This is not common, but it happens, and so, when that happens, we might be more aggressive up front and give these patients more aggressive chemotherapy to clean the bone marrow before changing them to the more normal therapies because the treatments that we give, like Revlimid (lenalidomide), Velcade (bortezomib), Darzalex (daratumumab) can depress the counts, right? 

So we’re in that battle. The patients already have low counts, we give the treatment, the treatment lowers the counts further, so it’s hard to give these treatments in these settings. And then, the third thing that we take into account is kidneys. About 25 percent of the patients will have renal insufficiency when they are diagnosed. Some of these drugs, particularly the immunomodulatory drugs like the Revlimid are metabolizing the kidneys, so it’s very hard to dose these drugs when the patients have renal insufficiency. 

So sometimes, for these patients, we avoid the IMiDs up front. We give a different combination until the disease gets better, and then we introduce the IMiDs. We think these immunomodulatory drugs like Revlimid are super important in the treatment of myeloma, so we want to give them, but sometimes we have to delay starting them until the patient’s kidney function improves.  

Myeloma Patient Profile: Sharing My Cancer Journey with My Daughter

Part 1

Myeloma Patient Profile: Sharing My Cancer Journey with My Daughter Part I from Patient Empowerment Network on Vimeo.

In this part one of three, Lori Sackett shares the journey of her multiple myeloma. She explains some of the symptoms she was facing before diagnosis to having to advocate to receive next-generation sequencing testing.

Part 2

Myeloma Patient Profile: Sharing My Cancer Journey with My Daughter Part II from Patient Empowerment Network on Vimeo.

 In this segment of Lori’s story, Lori and her daughter discuss the importance of seeing a myeloma specialist, having a good support network, and the role her daughter played in Lori’s care.

Part 3

Myeloma Patient Profile: Sharing My Cancer Journey with My Daughter Part III from Patient Empowerment Network on Vimeo.

Lori and her daughter share their biggest takeaways and pieces of advice for other newly diagnosed myeloma patients and their care parters/advocates.

Myeloma patient, Lori’s advice:

  1. Insist on seeing a myeloma specialist
  2. Take care of yourself physically and emotionally
  3. Look for people/support and allow them to help you
  4. Live for now

Myeloma care partner and advocate, Carleigh’s advice:

  1. During every appointment have at least one note taker
  2. Ask for a hard copy or print out of everything
  3. Create a way to stay organized
  4. Keep a list of questions
  5. Have a mindset of persistence and perseverance, and to maintain hope

My Self-Advocacy Journey With Ultra High-Risk Multiple Myeloma

My Self Advocacy Journey with Ultra High-Risk Multiple Myeloma from Patient Empowerment Network on Vimeo.

Multiple myeloma patient Lori shares her journey to diagnosis and treatment. Watch as she explains the varied symptoms that she experienced, the benefits of a second opinion and clinical trials, and her  advice to other patients.

Related Resources:

How to Thrive and Set Myeloma Treatment Goals

Expert Advice for Newly Diagnosed Myeloma Patients

Multiple Myeloma Danielle’s Clinical Trial Profile


Transcript:

Lori:

My name is Lori, I’m from Portland, Oregon. I was diagnosed at age 60 in June 2019 with ultra high-risk multiple myeloma. The road to my diagnosis was long and regrettably all too common.

I have always been very healthy and active. I believe my healthy history clouded my doctor’s ability to connect my symptoms to anything serious.

My journey started with chronic fatigue and needing extra sleep. Then came horrible headaches followed by shoulder and back pain, frequent infections that didn’t clear with antibiotics, and severe nose bleeds. 

In May 2019, I had my annual exam that included a blood draw. I later learned I was tested for diabetes and cholesterol but none of the basic blood panels that flag abnormal values. I went into my exam with my laundry list of issues, but was given a clean bill of health.

Four weeks after this exam I was traveling in Kenya on a safari.  I felt very sick during the trip, but I assumed I had picked up something on the long flight.  When I returned  home I could barely get out of bed. I collapsed in the middle of a dinner with some doctor friends who insisted I go to the ER where they held me overnight to perform additional testing. They discovered severe anemia and that my basic blood panels hadn’t been ordered for a number of years. I continued to think it was some odd African bug until the doctors arrived the next day to share the suspected diagnosis of multiple myeloma. I was in shock and very afraid.

I sought a second opinion and I was extremely fortunate to begin my treatment at Seattle Cancer Care Alliance. In July 2019, I was started on KRD induction therapy. Our journey was further rocked when our insurance declined coverage for carfilzomib, which was nearly $20,000 for two infusions each week. The insurer insisted I fail on the standard treatment before I could be approved.  I knew from reading how essential the first line of therapy is.  With Seattle Cancer Care Alliance’s help, I was finally approved due to my high-risk status. However, it took months to finally receive approval, and I had to take care of stressful, expensive bills while also completing my treatment.

Treatment was exhausting and required me to drive 3 hours each way each week from Portland to Seattle.  We needed to spend at least one night each week in a hotel. By October 2019, a bone marrow biopsy analysis showed no myeloma cells. I was reminded of the spotty nature of myeloma and the limits of biopsy testing, but I was extremely encouraged. 

At diagnosis, I was given a 20 percent chance of a 5-year survival. I am now 3 years post-diagnosis, and I am in remission.

Some of the things I have learned during my multiple myeloma journey are:

  • Ask your primary care doctor what tests have been ordered and request a comprehensive blood panel if you suspect something is wrong and not being adequately addressed.
  • Seek a second opinion at a cancer center that combines patient treatment and research. 
  • Clinical trials and new treatment combinations can be effective even for high-risk disease. 
  • Work with your doctors to get insurance approval for the protocols they recommend.
  • Empower yourself by learning about treatment options and new therapies.  
  • Be encouraged that there are so many positive advancements happening in multiple myeloma.

These actions are key to staying on your path to empowerment.

Myeloma Patient Profile: Jeff Boero

When Jeff Boero shares his multiple myeloma patient journey, it’s clear that self-education has been a vital part of his experience. He was first diagnosed through his primary care physician who referred him to a general oncology group in the San Francisco area. They confirmed it was multiple myeloma. It soon became clear to Jeff and his wife that he perhaps needed a second opinion, and he was connected with the University of California San Francisco (UCSF) to their multiple myeloma specialist. 

The second opinion changed the approach to Jeff’s care rather dramatically. He was quickly scheduled for a stem cell transplant and subsequent maintenance after that. As Jeff recalls, “Through UCSF, I became eligible for a CAR T-cell immunotherapy trial in 2017. That was very successful and kept me disease-free and medication-free for about 2-1/2 years. And then I relapsed and went on another maintenance program. I became eligible for another clinical trial for a bi-specific T-cell engager (BiTE) that I’m on now and am having good results.”

Jeff was almost in complete denial about his diagnosis for the first 6 months. The diagnosis threw him into a world of terminology and treatment that was completely foreign to him. That sense of his diagnosis feeling foreign also started to lead into a certain level of depression — just not knowing what it is, how is it going to be treated, what it meant to his long-term survival. Jeff remembers, “So, with the encouragement of my wife as caregiver, I became more educated as I engaged in various conversations with specialists and participated in some of the PEN webinars. It  became clearer to me about what some of the options are and what they can be. Being engaged with UCSF really opened up the treatment options. With me becoming more educated and able to speak the language of myeloma, I was starting to understand the diagnosis as it was presented by UCSF. And it led to a much richer engagement in conversation with the oncologist and with the nurse practitioners.” 

As a cancer patient, Jeff views self-education as the key to empowering patients toward better care. It was through self-education that he learned about other options. Before becoming more educated, Jeff was mostly just listening and trying to absorb as much as he could and seemed to remember mostly bad news. According to Jeff, “There’s so much good news around myeloma treatment and available therapies. It was through self-educating and those conversations that my outlook brightened too.”

By patients educating themselves, they can start to ask questions about the clinical trial like: “What is it, and why is it going to show better results than my maintenance therapy?” And in conversation, patients can start to better understand the purpose of the clinical trial. “I think it’s important for patients to understand what they’re trying to accomplish through the clinical trial that wasn’t through their maintenance therapy. What is it about this trial that’s different that we haven’t addressed previously?” But patients can’t ask those questions unless they have at least a basic understanding of their cancer and how the various therapies approach the cancer cell. “But if you listen to webinars and things like that, you’re better able to have those conversations. As a matter of education as these opportunities arise, you’re able to have a much richer conversation with your oncologist and your care team about the benefits that could potentially be derived from the clinical trial.” 

Clinical trials have benefitted Jeff, and he recommends seeking an opinion that is dedicated to research of your specific cancer. Learning institutions have more access to emerging research and treatments that likely won’t be FDA-approved until 2 or 3 years later. “So if you as a patient can be at the forefront of some of these trials, that can be tremendous. I’m on therapies now that didn’t even exist when I was diagnosed. Research is moving quickly.”

Jeff senses some hesitancy among patients about clinical trials. “There’s this misconception that if you join a clinical trial, one group is getting the real stuff, and one group is getting the placebo. And the trials that I’ve been in, everybody gets the real thing, and everybody’s progress is tracked on their response to the real thing.” He knows trials can seem intimidating. Jeff went through his initial clinical trial, because he was almost out of options for conventional maintenance therapy. His cancer burden continued to increase, and he’d been through a number of different treatments. “The CAR T-cell program came up and seemed to be a perfect fit for me. So I did the clinical trial partially out of necessity, but I also had extreme confidence in my oncologist that he was promoting something that he thought would be most beneficial for me. I think it’s a matter of putting trust in your oncologist. Maybe I’ve been lucky, but I’ve had good results and good response to both clinical trials.” He also feels that the sponsoring institution will give an honest appraisal of where the program stands and what the progress and success has been up to that point. 

Reflecting on the value of Patient Empowerment Network (PEN) and other resources, Jeff says, “I’ve gotten so much out of the PEN webinars that are provided and some other organizations. I’m a slow learner in this area but am absorbing as much as I can. I need to hear the same thing a few times before I start to absorb it and fully understand it. So I rewatch the PEN webinars, and it works for me.” He also suggests learning as much as one can but was advised early on to stay away from Google. “There’s so much out-of-date information. Whereas websites like Patient Empowerment Network’s and others have updated information that’s far more relevant. And I also find the navigation on the PEN website very easy to use.”

After meeting patients who don’t have the same level of health insurance benefits, Jeff feels a sense of gratitude. “I had tremendous support from my employer who in essence said take the time you need to get yourself well again. So I have a lot of gratitude for that support, my wife as caregiver, family, social support, my faith community, and for my proximity to UCSF that makes treatment very practical and very possible.” It’s opened his eyes in that regard. There are so many benefits that he has that others don’t have. “I’ve joined various support groups initially to gain support. Now things have come full circle, and I find that I’m at the other end of the conversation to give people comfort in what they could possibly be doing to improve their situation.”


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Is It Too Late for a Myeloma Second Opinion?

A Patient’s Perspective | Participating in a Clinical Trial

A Patient’s Perspective | Participating in a Clinical Trial from Patient Empowerment Network on Vimeo.

Colorectal cancer survivor Cindi Terwoord recounts her clinical trial experience and explains why she believes patients should consider trial participation.

Dr. Pauline Funchain is a medical oncologist at the Cleveland Clinic. Dr. Funchain serves as Director of the Melanoma Oncology Program, co-Director of the Comprehensive Melanoma Program, and is also Director of the Genomics Program at the Taussig Cancer Institute of the Cleveland Clinic. Learn more about Dr. Funchain, here.

Cindi Terwoord is a colorectal cancer survivor and patient advocate. Learn more about Cindi, here.

See More from Clinical Trials 101

Related Resources:

A Patient Shares Her Clinical Trial Experience

If I Participate in a Clinical Trial, Will I Be a Guinea Pig?

Are Clinical Trials a Logistical Nightmare?


Transcript:

Katherine Banwell:    

Cindi, you were diagnosed with stage IV colorectal cancer, and decided to participate in a clinic trial. Can you tell us about what it was like when you were diagnosed?

Cindi Terwoord:        

Yeah. That was in September of 2019, and I had had some problems; bloody diarrhea one evening, and then the next morning the same thing. So, I called my husband at work, I said, “Things aren’t looking right. I think I’d better go to the emergency room.”

And so, we went there, they took blood work – so I think they knew something was going on – and said, “We’re going to keep you for observation.” So, then I knew it must’ve been something bad. And so, two days later, then I had a colonoscopy, and that’s when they found the tumor, and so that was the beginning of my journey.

Katherine Banwell:    

Mm-hmm. Had you had a colonoscopy before, or was that your first one?

Cindi Terwoord:        

No, I had screenings, I would get screenings. I had heard a lot of bad things about colonoscopies, and complications and that, so I was always very leery of doing that. Shame on me. I go for my other screenings, but I didn’t like to do that one. I have those down pat now, I’m very good at those.

Katherine Banwell:    

Yeah, I’m sure you do. So, Cindi, what helped guide your decision to join a clinical trial?

Cindi Terwoord:        

Well, I have a friend – it was very interesting.

He was probably one of the first people we told, because he had all sorts of cancer, and he was, I believe, one of the first patients in the nation to take part in this trial. It’s nivolumab (Opdivo), and he’s been on it for about seven years. And he had had various cancers would crop up, but it was keeping him alive.

And so, frankly, I didn’t know I was going to have the option of a trial, but he told me run straight to Cleveland Clinic, it’s one of the best hospitals. So, I took his advice. And the first day the doctor walked in, and then all these people walked in, and I’m like, “Why do I have so many people in here?” Not just a doctor and a nurse. There was like a whole – this is interesting.

And so, then they said, “Well, we have something to offer you. And we have this immunotherapy trial, and you would be one of the first patients to try this.”

Now, when they said first patient, I’m not quite sure if they meant the first colon cancer patient, I’m not sure. But they told me the name of it, and I said, “I’m in. I’m in.” Because I knew my friend had survived all these years, and I thought, “Well, I’ve gotten the worst diagnosis I can have, what do I have to lose?” So, I said, “I’m on board, I’m on board.”

Katherine Banwell:    

Mm-hmm. Did you have any hesitations?

Cindi Terwoord:        

Nope. No, I’m an optimistic person, and what they assured me was that I could drop out at any time, which I liked that option.

Because I go, “Well, if I’m not feeling well, and it’s not working, I’ll get out.” So, I liked that part of it. I also liked, as Dr. Funchain had said, you go in for more visits. And I like being closely monitored, I felt that was very good.

I’ve always kept very good track of my health. I get my records, I get my office notes from my doctor. I’m one of those people. I probably know the results of blood tests before the doctor does because I’m looking them up. So, I felt very confident in their care. They watched me like a hawk. I kept a diary because they were asking me so many questions.

Katherine Banwell:    

Oh, good for you.

Cindi Terwoord:        

I’m a transcriptionist, so I just typed out all my notes, and I’d hand it to them.

Katherine Banwell:    

That’s a great idea.

Cindi Terwoord:        

Here’s how I’m feeling, here’s…And I was very lucky I didn’t have many side effects.

Katherine Banwell:    

In your conversations with your doctor, did you weigh the pros and cons about joining a trial? Or had you already made up your mind that yes, indeed, you were going for it?

Cindi Terwoord:        

Yeah, I already said, “I’m in, I’m in.” Like I said, it had kept my friend alive for these many years, he’s still on it, and I had no hesitation whatsoever.

I wish more people – I wanted to get out there and talk to every patient in the waiting room and say, “Do it, do it.”

I mean, you can’t start chemotherapy then get in the trial. And if I ever hear of someone that has cancer, I ask them, “Well, were you given the option to get into a trial?” Well, and then some of them had started the chemo before they even thought of that.

Katherine Banwell:    

Mm-hmm. So, how are you doing now, Cindi? How are you feeling?

Cindi Terwoord:        

Good, good, I’m doing fantastic, thank goodness, and staying healthy. I’m big into herbal supplements, always was, so I keep those up, and I’m exercising. I’m pretty much back to normal –

Katherine Banwell:

Cindi, what advice do you have for patients who may be considering participating in a trial? 

Cindi Terwoord:

Do it. Like I said, I don’t see any downside to it. You want to get better as quickly as possible, and this could help accelerate your recovery. And everything Dr. Funchain mentioned, as far as – I really never brought up any questions about whether it would be covered. 

And then somewhere along the line, one of the research people said, “Well, anything the trial research group needs done – like the blood draws – that’s not charged to your insurance.” So, that was nice, that was very encouraging, because I think everybody’s afraid your insurance is going to drop you or something.  

And then the first day I was in there for treatment, a social worker came in, and they talked to you. “Do you need financial help? We also have art therapy, music therapy,” so that was very helpful. I mean, she came in and said, “I’m a social worker,” and I’m like, “Oh, okay. I didn’t know somebody was coming in here to talk to me.” 

But that was all very helpful, and I did get free parking for a few weeks. I mean, sometimes I’d have to remind them. I’d say, “It’s costing me more to park than to get treated.” But, yeah, like I said, I’m a big advocate for it, because you hear so many positive outcomes from immunotherapy trials, and boy, I’d say if you’re a candidate, do it. 

Katherine Banwell:

Dr. Funchain, do you have any final thoughts that you’d like to leave the audience with? 

Dr. Pauline Funchain:

First, Cindi, I have to say thank you. I say thank you to every clinical trial participant, everybody who participates in the science. Because honestly, whether you give blood, or you try a new drug, I think people don’t understand how many other lives they touch when they do that.  

It’s really incredible. Coming into clinic day in and day out, we get to see – I mean, really, even within a year or two years, there are people that we’ve seen on clinical trial that we’re now treating normally, standardly, insurance is paying for it, it’s all standard of care. And those are even the people we can see, and there are so many people we can’t see in other centers all over the world, and people who will go on after us, right?  

 So, it’s an amazing – I wouldn’t even consider most of the time that it’s a personal sacrifice. There are a couple more visits and things like that, but it is an incredible gift that people do, in terms of getting trials. And then for some of those trials, people have some amazing results. 

And so, just the opportunity to have patients get an outcome that wouldn’t have existed without that trial, like Cindi, is incredible, incredible. 

What Are the Risks and Benefits of Joining a Clinical Trial?

What Are the Risks and Benefits of Joining a Clinical Trial? from Patient Empowerment Network on Vimeo.

Why should a cancer patient consider a clinical trial? Dr. Pauline Funchain of the Cleveland Clinic explains the advantages of clinical trial participation.

Dr. Pauline Funchain is a medical oncologist at the Cleveland Clinic. Dr. Funchain serves as Director of the Melanoma Oncology Program, co-Director of the Comprehensive Melanoma Program, and is also Director of the Genomics Program at the Taussig Cancer Institute of the Cleveland Clinic. Learn more about Dr. Funchain, here.

See More from Clinical Trials 101

Related Resources:

You’ve Chosen to Participate In a Clinical Trial: What Are Next Steps?

Understanding Common Clinical Trial Terminology

How to Find A Clinical Trial That’s Right for You


Transcript:

Katherine Banwell:

Why would a cancer patient consider participating in a clinical trial? What are the benefits? 

Dr. Pauline Funchain:

So, I mean, the number one benefit, I think, for everyone, including the cancer patient, is really clinical trials help us help the patient, and help us help future patients, really.  

We learn more about what good practices are in the future, what better drugs there are for us, what better regimens there are for us, by doing these trials. And ideally, everyone would participate in a trial, but it’s a very personal decision, so we weigh all the risks and benefits. I think that is the main reason.  

I think a couple of other good reasons to consider a trial would be the chance to see a drug that a person might not otherwise have access to. So, a lot of the drugs in clinical trials are brand new, or the way they’re sequenced are brand new. And so, this is a chance to be able to have a body, or a cancer, see something else that wouldn’t otherwise be available.  

And I think the last thing – and this is sort of the thing we don’t talk about as much – but really, because clinical trials are designed to be as safe as possible, and because they are new procedures, there’s a lot of safety protocols that are involved with them, which means a lot of eyes are on somebody going through a clinical trial.  

Which actually to me means a little bit sort of more love and care from a lot more people. It’s not that the standard of care – there’s plenty of love and care and plenty of people, but this doubles or triples the amount of eyes on a person going through a trial. 

Katherine Banwell:

Yeah. When it comes to having a conversation with their doctor, how can a patient best weigh the risks and benefits to determine whether a trial is right for them? 

Dr. Pauline Funchain:

Right. So, I think that’s a very personal decision, and that’s something that a person with cancer would be talking to their physician about very carefully to really understand what the risks are for them, what the benefits are for them. Because for everybody, risks and benefits are totally different. So, I think it’s really important to sort of understand the general concept. It’s a new drug, we don’t always know whether it will or will not work. And there tend to be more visits, just because people are under more surveillance in a trial.  

So, sort of getting all the subtleties of what those risks and benefits are, I think, are really important. 

Katherine Banwell:

Mm-hmm. What are some key questions that patients should ask? 

Dr. Pauline Funchain:

Well, I think the first question that any patient should ask is, “Is there a trial for me?” I think that every patient needs to know is that an option. It isn’t an option for everyone. And if it is, I think it’s – everybody wants that Plan A, B, and C, right? You want to know what your Plan A, B, and C are. If one of them includes a trial, and what the order might be for the particular person, in terms of whether a trial is Plan A, B, or C. 

Path to Empowerment: Multiple Myeloma | Treatment

Your Path to Empowerment | Myeloma: Treatment from Patient Empowerment Network on Vimeo.

Navigating treatment for multiple myeloma can easily become overwhelming. What education can you receive prior to treatment or what impact will a specific treatment have on your daily life? Hear from a panel of myeloma patient advocates who share their personal experiences, advice and various resources.

See More from Your Path to Empowerment | Myeloma

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Transcript:

Lisa Hatfield:

Okay, hello and welcome to our Path to Empowerment Living with Multiple Myeloma program here at Patient Empowerment Network. I am the myeloma Empowerment Lead here at Patient Empowerment Network. My name is Lisa, and I’m also a myeloma patient diagnosed back in April of 2018, I started having a pretty significant pain in my hip about one or two years before I was diagnosed, how to spine x-ray didn’t show anything in about five months later, went in for an MRI and was diagnosed with a large plasmacytoma that had eaten away a part of my spine, I have been fortunate enough to have care at MD Anderson. I was able to go down there, both for my spine and for my cancer. I met with the radiation oncologist immediately upon going to MD Anderson, who had me go through eight sessions of radiation. My treatment consisted of the radiation and then spine surgery to support my spine because my spine was compromised and close to the tumors close to my spinal cord, all of that was followed by… I met with myeloma specialist, Dr. Karina Patel at MD Anderson, and she wrote my prescription and orders for chemo to be done back in my hometown in Boise, Idaho. 

So, I came home for six months of chemo, and I had it every week for three weeks on one week off, and my chemo treatment consisted of KRD, which is carfilzomib, Revlimid and Dex also known as Kyrpolis, Lenalidomide and Dexamethasone. I did have that for six months on, like I said, three weeks on one week off. Had a great response. My last treatment that I had, I followed that up by going to Seattle to have stem cells collected and was also re-staged, my cancer was re-staged in Seattle was MRD negative, ten to minus five, but at that point, I opted to wait to have my stem cell transplant until first relapse, and since then I’ve been on maintenance therapy for about three and a half years, Revlimid also called Lenalidomide was on it every day until about a year ago when I was given one week off after three weeks on and for the past 10 weeks, I’ve been completely off of maintenance therapy due to side effects of getting progressively worse, including neuropathy and digestive side effects, so that is my history with myeloma, we are very fortunate today to have two other patient panelists, Jim and Sheri, who will introduce themselves. 

I’m going to back up for just a minute, people like to know the type of myeloma we have, I have kappa light chain only myeloma, which means I do not have an M spike, I’m followed with the free light chain that shows kappa light chains in my blood and also a 24-hour urine, that shows Bence-Jones proteins in the urine. So, kappa light chain only, my cytogenetics, I feel like I have to share my zodiac side too, but my cytogenetics are translocation, 11, 14 and monosomer 13. So we’ll move on to our patient panelists, welcome them. Sheri, she’s a support group leader for the International Myeloma Foundation here in the Treasure Valley and Boise, Idaho. So Sheri, if you could just introduce yourself, please, and explain your history with myeloma, the treatments you’ve had, current status and type of myeloma. That would be great. 

Sheri Baker:

I’m Sheri, and I was diagnosed in October 2011 with IgG Kappa myeloma. We found my myeloma because through blood work to check, just kind of more of a routine check, it was discovered that I had kidney failure, and my kidneys were only functioning at 8%… Normally should be 100% or close to that, so 8% kidney function. Didn’t know why. It took a couple of weeks and a bone marrow biopsy to figure out that it was because of myeloma. So, IgG Kappa, but no cytogenetic markers now, high risk markers, just standard, normal myeloma, but it did attack my kidneys versus my bones, very minor minor small lesions that I had. Anyways, that was 2011, in October, within a couple of weeks, I started dialysis and started my first treatment, which was in 2011, they weren’t really doing doublets and triplets very much, so it was, well, a doublet, if you want to consider Velcade, which is bortezomib plus Dexamethasone. So, I was on those two, and I did four cycles from October to the end of December to get me ready and see if I had a good response for a stem cell transplant. 

I had a stem cell transplant in March of 2012, I got a very good partial response for my stem cell transplant, still had a small M-spike, but because of the dialysis and my kidney issues, I decided not to do maintenance therapy, I’m really the only or the standard maintenance therapy was Revlimid, and I know Revlimid can be tough on your kidneys, so I decided after researching it and talking with my doctor not to do maintenance therapy, so I was off of therapy for two years, but my numbers had started to increase. So in April of 2014, when faced with having to go back on something, I asked my doctor if I could do Velcade again because I’d only done it for four cycles, really only about two months’ worth, and he looked into it and said, yeah, so that’s what I did for six years, Velcade as therapy, maintenance therapy, if you want to call it that, but I did it solid three weeks on, one week off for six years, when that started to quit working and I started looking at changing treatment again. I changed to Darzalex Faspro, Revlimid this time at a low dose and Dexamethasone. 

And it has been two years since I started that treatment. I’m now on monthly Darzalex, and I stopped the Revlimid in February because again, lower blood counts and it could be tough on your body, and I stopped the dexamethasone as well, so I’m only on Darzalex once a month, and it seems to be holding. It did finally put me into a zero M spike, complete remission, which I really hadn’t been in 10 years, so that’s a good thing, and I’m still holding my own with that right now, so that’s my story. And I was able to get off of dialysis. I was only on dialysis for two years, and my kidneys recovered just barely enough to stop dialysis and they have slowly improved over the 10 years or over the eight years, and my kidney functions generally around 25% right now. So that’s where I’m at. 

Lisa Hatfield:

Thank you. Well, thanks Sheri. Jim, if you would please introduce yourself and give a little bit about your history and the treatment that you’ve had. 

Jim Bond:

I am James Bond, and I’m the real James Bond, I’m not the movie actor. And my beautiful caregiving wife, Kathleen, if she were here with me, you would believe that I am the real James Bond. But I was diagnosed in 1992, so that was 30 years ago, and I was at stage three with Kappa light chain, like you, Lisa, and I’ve had some treatments during those 30 years, and I can recap those for you. It’s pretty easy. The first 10 years I had three transplants, there were no current day modern drugs for myeloma available, and I was one of the pioneers in the clinic trial that got Velcade approved. In fact, it saved my life when I was told to go to a hospice and I was lucky enough to get in the trial, and that was up in Boston, away from our home, and home run got saved and Velcade got approved, and I’ve really not been in danger with myeloma since then, although I have been in a total of six clinical trials, including Revlimid that you’ve been on Lisa and help that one get approved, but ever since, Velcade my myeloma has not been life threatening.   

Another highlight of the treatments that you asked her to sell is that I did get treatment-related leukemia, and they’re not… Positive why. One of my transplants, I had to have full body radiation as part of the protocol, and I took some other drugs like Melphalan and we all have to take for transplant, but those were leading suspects of what may have caused the treatment-related leukemia. But I was very, very fortunate and they were able to find an unrelated donor, and I haven’t matched my stem cells, and I had a fourth stem cell transplant over a decade ago, and that put the leukemia in remission and where I remained today on both cancers side note to the last allo transplant, my four transplants break down two autos and two allos, but my last allo was from a woman living in Germany and it kind of explained to me why ever since that transplant, I’ve had this urge to go to October Fest. 

More seriously, I’ve had some serious side effects, the most prominent of which is graph vs host disease from the other person cells, which affects my skin, my gut, and surprisingly the surface of my eyes. I had to get special contact lenses that I have to delicately put in, take out every day to return my sight to normal, but it’s worked out really well.   

Lisa Hatfield:

Thank you, Jim. And I’ll just provide a quick reminder that this program is based solely off of our patient experiences and should not be substituted for medical advice, so please see your physician or any qualified healthcare provider if you have any questions about your medical conditions including myeloma. You do have an opportunity to ask questions of the patient panelists at the end of this program. If you use on your zoom, there should be two little buttons one a Q and A function and one a chat box, submit your questions there and are behind the scenes, producer will be watching for those questions, and our patient panelists are available to answer those questions at the end of our program, just that reminder, but with our medical disclaimer.  

So, we’re going to jump right into our questions that we have now for the patient panelists, and Jim, I think I’ll start with you, you already established some of the treatments that you had, but sometimes when I go to our support group meetings for which Sheri leads this group here locally, people will say things like, I really wish I had known this about treatments. Is there any one or two things that you wish you had know looking back now, that you wish you had known going into any particular treatment that you do know now?

James Bond:

Yes, there are a couple that stand out and they’re the subject not only of my book and our talks, but I started doing episodes, four-minute episodes on YouTube, and one of those episodes is on my experience with using steroids, which one or both of you mentioned Dex is one of the components to one of your treatments. So, dexamethasone is the most powerful steroid that I use, and it was required with getting me ready for my first second, third and fourth transplants, and it was also a steroid that was used for a while I did do maintenance before I got leukemia. And the thing I wish I had known about steroids from beginning is after I had a hip or one of my two hips replaced, the hip surgeon told me, Jim, you cancer patients are higher risk for needing to get a hip replaced. Something called avascular necrosis because of the long-term use of steroids that you’re required to do. Well, when I found that out. It’s been 15 years ago. I started challenging my doctor, I said, look, can we try that maintenance that you’ve got me doing, but do it without the prednisone steroid, and he balked at that because that wasn’t the way that they were doing it. 

But I said, how can we work it out? Because I’d really rather not get the other hip replaced, lower my risk, and we agree to something in between, and he said If you’re willing to come in here every six weeks and monitor your blood, that I’d be happy with you staying on no maintenance. So that’s really what I’ve been doing. And I know that earlier on, I probably would stop the prednisone earlier on, there’s nothing I can do about the dex required for getting me ready for the transplant. That was part of my story. But that would have been helpful to know.  

 Lisa Hatfield:

So, one of the questions too that somebody asked me a while back, had been diagnosed for a few years, gone through induction, stem cell transplant, lived in the Boise area, had never seen a specialist. Can a person, if they haven’t seen a specialist from diagnosis or can they seek advice of a specialist anywhere during their myeloma journey?   

Sheri Baker:

Yeah, I think so, for sure. For the first, probably two and a half years, maybe. I didn’t consider seeing a specialist because what I was doing was pretty straightforward, I had standard risk myeloma, and I was a newbie, I was a rookie, and I just kind of went along with what my doctor said to do, and I don’t think I did anything wrong; I don’t think I made a wrong turn; I should have done something different. But the more I started reading and researching, the more I realized that being with someone who deals with just myeloma and a large number of myeloma patients, because like Jim said, everybody’s myeloma is different, so when you see someone who’s dealt with a variety of myeloma cases and can see the differences, it’s helpful, so that’s when I saw… It was probably closer to three years in my journey before I saw a specialist, and then I didn’t have… And I saw that specialist, I saw her for a couple of years, once a year, kind of a thing, and my myeloma was stable. Once my myeloma changed and I wanted to see somebody closer to home, relatively speaking, I changed specialist because it was easier to see and travel to, and again, I knew my myeloma was on the rise again, and I wanted to get a specialist opinion, because there are so many choices of treatment and this was just two years ago. 

And the landscape of myeloma had changed drastically, so I really wanted to see a specialist and find out… Now, what do I do now that I’m making a change? And so, I think anywhere in your journey, if you’ve never seen a specialist, you can certainly see one, and I know as a support group leader, I’m very happy that I have convinced some members of my support group to see a specialist because their myeloma is getting tricky to handle… And they need someone who has seen more cases and has a better idea of where, what they should do at that point. 

Lisa Hatfield:

How did you choose your myeloma specialist? 

Sheri Baker:

It was funny, my husband said, we’re going to go see a specialist, we’re going to see one of the best, so we kind of looked at the top 10 list, we went off of a website that had done a lot of research and ranked enlisted specialists and this specialist at Duke, my son was living in North Carolina and we thought, Well, she’s one of the best. We can visit him and we can go to the specialist, so that’s why we chose to go all the way across country and see a specialist. 

Sheri Baker:

When I changed specialist, one of the reasons was my son had moved back to Idaho, I didn’t need to go to North Carolina anymore, and I had met this specialist in person, really liked him, had a good rapport, my husband met him at a patient conference and really liked him as well, and he said, we should see if we can switch. And see him now because it’s closer, and I just really like him, so that’s how I made my decision there. 

James Bond:

One of the questions on the homework was, so what about access to treatments? And I’d like to say something about that. We had to pull up stakes at the drop of a hat and relocate 600 miles from Cleveland, Ohio to Boston, Mass for this all important turned out to be a Velcade trial and we were able to do that financially. I had a great job, I was still working, great insurance. And my wife and I looked at each other and thought, what about people who don’t have the resources to do this? And my wife is a 40-year volunteer for the American Cancer Society, and she’s become a real leader with them, including the national board of directors. Well, she pointed out that that’s why the American Cancer Society has over 30 hope lodges around the country, where cancer patients and a caregiver stay for free while they’re being treated typically for an out-of-town treatment they can’t get at home. 

And that’s really good information for people to know because even though there’s only 30, there are a lot of cities and states in our country, the American Cancer Society has a relationship with at least one hotel chain where they can help with very inexpensive accommodations while you’re out of town for cancer. So, the American Cancer Society, 24 hours, seven days a week, support line. It’s really some place to look, if you’re having trouble with finances on getting out of town. 

Lisa Hatfield:

Thanks, Jim. And you mentioned something too, I think we’re all on board with our feelings that seeing a specialist is critical on your myeloma journey at some point, however, that requires the financial means to be able to do that, to be able to travel, to pay any co-pays or out-of-pocket expenses that you might accumulate from that, or even when we went down to MD Anderson, I was scheduled to go to appointments for five days, we stayed down there for a month because I had to have an emergency spine surgery. All of those are unexpected expenses, so I just want to say if anyone has questions, as they’re watching this feel free to contact me. I have an email, cure4mm@gmail.com. It’s the number four. I won’t know all the answers, I have a lot of great resources, including Sheri, who leads our support group to help try to find resources for people who are seeking a second opinion or a myeloma specialist. Even if it’s just once during your myeloma journey, please reach out because there are resources out there, whether it’s through the IMF or the LLS, the Leukemia Lymphoma Society, there are resources, it’s critical to seek out the advice of a specialist at least once during your myeloma journey. 

So just wanted to put that out there. And Jim, I do have another question for you. I did read your book, I have it right here. Thank you for doing that is a very easy to read book and it provided a great perspective on because myeloma is incurable, how can we live with this for 30 years, and still live our lives while going through treatment after treatment, and you had great insight and inspiration in your book about that. So, thank you for putting that out there, but it brings up a big question that I had, and I still have… You had talked about the plasmacytoma that had developed on your head and had radiation, and I think it was that point, I have ear marked in the book, one of my big… I’m terrified when I ask a question of a doctor, because I’m afraid it’s going to appear that I’m questioning their expertise, if I disagree with the treatment or if I’m uneasy with the treatment. I have a hard time saying, hey, I think that this might be a better option for me. Well, in your story, you had during this time of this plasmacytoma, you mentioned that you were on a maintenance drug, your doctor, one of your doctors wanted to add a second drug, I believe, to your maintenance regimen, just to make sure that everything was knocked down as much as it could be your abnormal proteins for increasing, you felt you just want to increase the dose of the one drug you were on rather than adding another drug. 

My question for you is, you did approach your position, you had a method of doing it… How did you do that? 

James Bond:

Yes, that was the most contentious I’ve ever been with my myeloma expert, Paul Richardson. He and I and my wife are really good friends, I mean that. We’re talking close friends. So, I was at that point where I was on a little bit of a maintenance drug, I think it was Revlimid and my protein started to go up, and Paul wanted me to add Velcade to it. Well, my strategy is I wanted to hold on to Velcade in case my life was ever in danger because it was one that really saved me when it was, and so I resisted and I said, Paul, let’s just try increasing the dose. And he resisted, and there was a little contentious over the telephone, finally… And here’s the key, we have had a really good relationship with Paul’s oncology nurse, Debbie. Debbie is now retired. Debbie said, Jim, let me talk to you privately. She and I got on the phone primarily without Paul, and she said, Jim, here’s the thing, you’re not going to convince Paul based on the myeloma knowledge, he wins that argument every time because he knows it. She said, what you can make progress on is what you’re comfortable with, and if you come out of it at a standpoint say Paul, I’d be more comfortable trying to increase my dose and give it a month and see how that goes. 

That worked like a charm. And so, it was a study nurse who got involved, saw that she had two people who were kind of dug in and listened to her closely, and that really mitigated what could have been a difficult situation. Here’s the really surprising thing and great thing is then after I had the dose, and he had me do another this and another that to make sure there was no other problems in my body, and when the protein went down at the higher dose, I thought he might be a little bit remissed, dumb luck or not my call worked out. First thing out of his mouth on the phone was Jim, good call. Good for you. So that’s the kind of guy he is. He puts ego aside and he just wants to do the right thing for his patients. Same Doctor called me at 8 O’clock at night. I was having real difficulty with that fourth transplant, the one for leukemia, I was there for 75 straight days, and he called me one Sunday night and assured me I’d make it through. That meant a lot to me at the time and it still does and that did help me get through with the thing. 

So, our relationship with doctors is really important, and you’re right, not to want to rile your relationship with your doctor, but the words I’m more comfortable with go a long way with me and my doctor. 

Lisa Hatfield:

That’s a great piece of advice going in, especially for those of us who don’t want to question the medical expertise to say something like that, I’m more comfortable with this, and then they can consider it, and I think it’s a team effort, it’s a collaboration when you’re dealing with the lifelong disease like myeloma it has to be a collaborative effort. For the best outcome, so that.   

James Bond:

We look at it like you know the science and the biology, and that’s great, but we know 30 years of history and we know our own risk tolerance, and by putting those two together and collaborating, like you said, was… I think we get the best to answer. 

Lisa Hatfield:

Yeah. Great, thank you. So, Sheri, I know that you have gone through… Well, you had dialysis, there are all kinds of treatments that are involved with myeloma, we have radiation, we have surgery, we have chemo, some people have dialysis, stem cell transplant, so focusing on the chemo aspect, because I believe every myeloma patient will have chemo at some point. Some of the questions that come up with that, or what is that like when you go and did you… When you were first diagnosed, were you able to do some of your own prepping to develop questions, and did somebody prep you? Did they provide any education? What should it even look like when you went into the chemo… What did it feel like when you walked in there? I just figured when I went in, it would be people laying in bed getting sick, they’re all going through chemo, and nobody would have any hair, 80% of the people had hair still, so what was it like for you when you first started chemo? What kind of education did you get and what did it feel like just walking into that chemo suite the first time? 

Sheri Baker:

Well, it’s funny because it was almost 11 years ago, and it’s very different than it is now, there was kind of no real walking you around the chemo Suite and what not in my case, I think it’s because I saw my doctor downtown in Boise, but because I live in Meridian, just outside of Boise, I went to the facility that was there because it’s a little closer to home for most of my treatments, but I liked my doctor who was downtown, so I wanted to go there so anyway, I think because I was back and forth between the two, maybe.

But now I know that they have a program with new patients where they walk them around, they show them the chemo suite, they show where you’re going to get your treatments, and so it’s very different from when I first went in 11 years ago. In fact, when I went in, I really didn’t know what… I knew what the name of the treatment was, but I did not know anything else. I didn’t know how it would be administered, nothing. And they had just started in our hospital here locally, they had just… And I think most of the country had just started switching over from Velcade, which was given in the IV form in the beginning for years to the sub-q injection. So, when I sat down to get my first chemo, because I didn’t know any better, the nurse started an IV in my hand, but then somewhere along the lines in my head, I was like, I thought this was going to be a shot, but I just didn’t know what they were doing… And so, I asked her, I said, aren’t I supposed to get this as a shot in my arm at the time, I thought… 

And she’s like, oh my gosh, I am so sorry. And ended up taking the IV out, and to this day, I still tease her about that. But yeah, I feel like I was a little unprepared, I don’t think the hospital necessarily did a good job of preparing in the beginning, I think they have gotten much better about that, but I do always try to… I try to help the hospital from a patient perspective of, you really need to do this when I was a brand-new patient, this is what I would like to have had. I would like someone to have told me about a support group, I would like them to have told me what my treatment was actually going to be like on that first day, and I think they’re getting better about that, but a lot of that is on us as being your own best advocate, you know, like Jim said, you know they know the myeloma stuff, but you know your body, you know yourself, you know what you’re comfortable with, so you have to ask, at some point in my six… Six years of getting Velcade after I relapsed the first, probably two years, I got the shot in the back of my arm because that’s what everybody did, but then I read about it online and… 

Yeah, you can’t trust everything you read online, you have to be careful. But I read that it was… A lot of people were getting it in their belly, that it was originally intended to go in your belly, and I asked about it and they’re like, Well, yeah, we can do that, and now most people I know at the clinic do get it in their belly, so it’s just a matter of educating yourself and asking questions, and don’t hesitate to ask a question, that’s the only way that you will get answers, it’s the only way you learn, and sometimes it helps educate the doctors and nurses around you as well. 

Lisa Hatfield:

Thanks. So do you think of a patient… A new patient is going into chemo, it’s really uncomfortable. Do you think they would be able to ask, hey, can I have a tour of the chemo suite the week before or a day before my treatment begins. Do you think that would be a reasonable question?  

Sheri Baker:

I think it’s definitely a reasonable question, and obviously cancer centers across the country, I have no idea how they do it, but I know ours here locally is getting better about doing that, it’s a process now, before your first treatment, they’ll walk you around and show you everything so you have an idea of what to expect and you’re comfortable or as comfortable as you can be on your first treatment day. 

Lisa Hatfield:

I have one more or two more questions I’m going to have… I wanted to ask really quickly, both of you can respond to this Jim, we’ll start with you, during all of your treatments, have you had any unusual side effects that nobody was able to explain or that you hadn’t heard of prior to starting that treatment?   

James Bond:

Yeah, probably the emotions got away from me at one point, I lost my temper when I shouldn’t have, and I attribute that to everything about that. I don’t know if it’s just steroids or just the treatments or what… But I like to ask questions, I’m not afraid to ask questions. And I read the signals to my family that I needed to do something differently, and I asked my oncologist who had to become really good friends with here in Cleveland and he recommended a professional and I sought his help, and he sat me down and he gave me some really good advice that I still live by. So, you know, that’s something I didn’t expect and I don’t know if I could have prepared for it, but just being flexible in letting your ego leave at the door step and just realize, hey, you need these people’s help to get yourself going, and just accept, in my case, accept that I’m not as young as I used to be for one, 73 is not 43. And there’s certain things I just can’t do anymore. So, you just got to kind of roll with that, so I hope that’s of some value. 

Lisa Hatfield:

So, Sheri, I know you had an unusual side effect because we talked about it, it was to Revlimid, and I remember getting the same side effect early on in my treatment, I was a really, really itchy scalp in the middle of the night, scratching… And the pharmacist actually talked to, didn’t even know about it, so you and I talked about that, that was one of my unusual side effects that a lot of people didn’t know about. Have you had any other unusual side effects that even your providers were a little bit curious why that was going on, and you think it was from the treatment?   

Sheri Baker:

When I was on Velcade, I kept getting styes on my eye like right in my eye lash line, upper or lower. And we think that now that that… I’ve seen a lot of other people comment on Velcade, they have that as well, but at the time, doctors didn’t really seem to know that that was a side effect of the Velcade. I think that’s why it’s so important when you have a little… I shouldn’t say little, any kind of side effect or something that you have and you should ask and you need to report it to your doctor and kind of report it to the pharmaceutical company because if these things are happening with other patients, but nobody tells the pharmaceutical company then they don’t know that’s a side effect of that particular drug, so that’s probably one of the ones that we weren’t sure that and a lot of cramping, hands, feet, my face, that’s what led me to get blood work in the very beginning when I first got diagnosed was an excessive amount of cramping in my legs and feet, but after I started Revlimid, I had a lot of cramping, cramping, like my face would cramp, cramping in my hands, and we lowered my dosage of Revlimid and that did help, but I don’t know how many people get that to the point where I couldn’t even drive the car, my hands cramped up so bad that I had to pull over until the camping stopped because both hands were cramping, so those are probably the more… 

 I don’t know if they’re unusual, I think a lot of people may get them, but not an easy thing to solve, an itchy scalp…That is crazy. That is crazy. I just saw someone who just quit Revlimid and then got the itchy scalp and she asked, has anybody gotten that when they quit the Revlimid because she goes, now that I’ve been off of it, I have a really itchy scalp, like you say, the cancer itself is different in everybody… And then everybody’s side effects are just slightly different, so… 

Lisa Hatfield:

I think you’re right, that’s why I like talking to other patients because these unusual things the doctor does not know what it is, but you talked to somebody else, like I had that same exact thing happen. You’re right, I reiterate what you say let your provider know when you have side effects and maybe even let the pharmacy or a pharmacist at the cancer center now so they can report that accordingly.  

So that’s my last question is one takeaway that both of you have, whether it has to do with the emotional or mental health challenges of having myeloma or just dealing with even more acute things like, oh my gosh, I’ve got a new treatment, how to deal with that emotionally, one take away that each of you has to help my myeloma patients as they go through the treatments with myeloma. Sheri, do you have one thing that you can leave everyone with or talk about the emotional challenges that you have, how you’ve dealt with them?   

Sheri Baker:

You know, I think that I am different than most people in the beginning, it was a devastating diagnosis. When they tell you three to five years, that’s devastating, because then you start… I was only 49 so you start thinking about all the things that you thought you were going to have in your life, watching your kids get married, having grandchildren, retiring together, living out your… traveling, doing all these things you think you’re going to do, and when you get that first diagnosis it just throws everything in the trash can and so the first six months to a year probably, I focused a lot on that, but then you start to adapt and you’re living with it, and it’s not as bad as what you thought it was going to be in the beginning, and it’s a cancer that we will live with the rest of our lives most likely, hopefully 30 years like Jim. I’ve made it almost 11 years, which didn’t think would happen in the beginning, so now… It’s just part of my life, it’s like, I hate the term, that it’s a chronic illness. I don’t like that it is still cancer, it is not just a chronic illness, but yet that is how we live with it every day, like if you have diabetes, you get up and you take your insulin or whatever, you take every day for diabetes, same thing I get up every day, take a whole host of pills, go once a month for a treatment that keeps me going, it’s just a part of my life now, but being a patient advocate has made it a little different where it is always in the forefront of my mind. 

Everywhere I go, everything I do, I think about it from the support group standpoint or for me as a patient standpoint or whatever, but I think I like Jim, I do that maybe I need to not think about it so that I don’t get burned out. But I’m one of those people that has always had a positive attitude about it, and I feel like for me, it’s been easier to deal with than what a lot of other people go through, which is one of the reasons that I’m glad I started the support group to hopefully help people deal with it a little bit better, but yeah, it definitely changes what you thought he… And Jim was young when he was diagnosed, it changes what you think your life… The rest of your life is going to be like… You know, at least that little map you had in your head of how things would go, but I am just… I don’t know, I just deal with it, I think easier than a lot of other people, it’s never been out of my head to say to have a positive attitude, and I know people get sick of that, you got to have it. 

It’s all about the attitude, but that’s just been easy for me and that’s how I’ve always been… My whole life has been on the upbeat side. So, it’s been lucky for me. 

James Bond:

Thank you for being a support group leader, you help many others, they’re closing thought All The you with us. When we have this incurable deadly disease, keep making your long-term plans don’t feel like cancer will get in your way; you have to change a plan so be it. Keep making your plans. Live your life. You can do it. Hang in there. 

Lisa Hatfield:

Thank you so much to both of you for those positive words of wisdom, keep making your plans. The first thing I did when I found it was telling my husband, we have to update our will, so we move forward with our plans for travel and that type of thing. Great advice, and I really appreciate that. So, thank you to both of you so much for your information and for sharing your experience. We’re going to move on now to the Q and A section, so I’ll remind everybody who is watching this to use the little buttons at the bottom of your screen, the Q and A function, the chat function, and our producer will be forwarding those off to our patient panelists. Thank you.  

Well, welcome everybody to our live Q and A session, as you can see, it’s a different day, that was a pre-recorded session, so I’m going to welcome back Jim and Sheri, and they will be on to answer questions. We have a number of questions on the Q and A, we have a number of questions that were submitted via email and during registration, we’ll get through as many of those as we can, I just want to send a reminder to everybody that we are not…   

Your healthcare providers, we’re just strictly speaking from our own experiences, patients, we encourage you to talk to our healthcare team, and even if you get one little piece of information from this program and you’d like to take that back to your doctor… I’m sure they would be willing to talk with you about that. So please remember that as you’re asking questions to questions a little bit more general, and to understand that we can’t answer medical questions directly, but we will speak with our own experiences to your questions. I’m going to jump right in, and one of the questions that was submitted during registration will start with that, this point will be for sharing, and again, she can’t necessarily speak to the efficacy of treatment, but she can speak to come experience. So, the question is what other effective treatments are there for those in multiple myeloma remission, besides Revlimid. If you could just review again, you were on Revlimid for maintenance therapy. I assume this person is referring to maintenance therapy. What other medications have you been on? And again, she’s not endorsing these medications. She’s just strictly maybe giving you some ideas to talk to your doctor about. So, Sheri? 

Sheri Baker:

Yeah, in the beginning, when I decided to start treatment again, because I didn’t do maintenance right after my stem cell transplant, but when I decided to start treatment or needed to start treatment again, I was on Velcade. My husband always called it being on treatment, not maintenance, because it was three weeks on one week off, and I did that for six years, so that along with dexamethasone for probably two of those six years. That is a treatment option, and it’s typically an upfront treatment option for people, and it can be… I know quite a lot of people who are on Velcade as a maintenance program, there’s obviously Revlimid. And I’m on Darzalex now, which again was given when my cancer markers and numbers, my M spike was increasing and I needed to change treatment, so I was given Darzalex, Revlimid, and Dex, and I’m still on Darzalex now as by itself, if the Revlimid had not lowered my blood count, so drastically and they weren’t bouncing back on my weeks off, I would have still been on Darzalex and Revlimid as maintenance, but now I’m just on Darzalex maintenance. So, those are some options that I’ve had experience with. 

Lisa Hatfield:

And that’s great to hear because I know that kind of the go to for maintenance is Revlimid. That’s what I’ve always been on, so I don’t have experience with anything else, and as long as you were talking, Sheri there was a question that you were going to answer live about what you would do differently if you were diagnosed, could you answer that question for the audience, please?  

Sheri Baker:

Yeah, you know, years ago, before I was on Revlimid, in my head, I said If I had it to do differently, again, I do two things, one, I would have consulted with a specialist right from the very beginning, and through that, I probably would have gone ahead and gone on Revlimid maintenance after my stem cell transplant, even though I was on dialysis, because a couple of years later, speaking to a specialist, she said Revlimid can be dosed accurately to not totally affect your kidneys. So, looking back, I would have seen a specialist and I probably would have done some sort of maintenance therapy right after to give me a longer time before changing treatments. But now that I’ve had 18 months of experience with Revlimid and the way it was for me, by lowering my blood count so badly, I think now that I’m okay that I didn’t do any maintenance for two years, so that’s kind of a tough choice, but I would definitely have seen a specialist right from the get go. 

Okay, that’s good advice. Jim, how about you? Is there any piece of advice, if something you might do differently if you were diagnosed today? 

James Bond:

Very little. We try not to look back, we try to stay in the moment as best we can. I think all cancer patients, including me when into it with the idea that the doctor and nurses, they really had all the answers, we really should follow everything they say, but as I got more and more experience along with my wife… I guess looking back, maybe I could have spoken up earlier. For example, I haven’t done maintenance in 10 years, and that’s not the preference of my doctors, that’s my preference, and I’m willing to go ahead and get my blood checked every six weeks as something to make us kind of reconcile with the two views, but they’re just human beings like the rest of us, and I think just opening up and becoming… Developing a good relationship early is really helpful and it worked out, but maybe focusing on that more at the front would’ve helped.  

Lisa Hatfield:

Well, thank you for that. So, we do have a lot of questions about side effects and how to deal with those. I wanted to make a comment, we did have a question that came in via email, are red blotches on arms and legs and the chronic post side effects of Revlimid 5 milligrams taken while in remission. And just to answer this a little more generally, I think that your doctor may tell you, I told me that any medication can cause almost any effect that it’s hard to know which effects come with which medication. From my own experience, I did develop red blotches on my arms and on my hands, and they actually got swollen, and I did look at their website, it’s Bristol Myers Squib now formerly Celgene that manufactures Revlimid. That is a common side effect, both the rash and also the chronic cough, something you should definitely talk to your doctor about though, it’s always nice to kind of see those images… I actually was going to print a picture of what the rash looks like on my back, I also got it on my back, but I wasn’t sure my producer who’s also my boss would be super thrilled with me putting that you know on a live program.  

I know from my experience; my doctors did say that that rash on my arms and on my back and on my torso was caused by Revlimid. And when it comes to side effects, another comment I’m going to make about clinical trials is when clinical trials are done, they’re looking at the maximum tolerable dose of a medication not the minimum effective dose. So, for anybody who’s experiencing side effects, it might be helpful to ask your doctor if there is a lower dose that you can take of that medication and see how it goes, and we’re not saying that’s the best idea for you, but working as a team with your doctor, he or she may have an idea of how to reduce to that dose to see if the side effects can also be reduced with that. So, I’m going to move on to another question about, have either of you had different experiences with foods or supplements? I see that Sheri said that she does use… I don’t know how to say it, Curcumin. I don’t know if that helps. I don’t know if there’s any… There’s a study being done on that right now at clinicaltrials.gov.  

If you look it up and you can just search for that. Jim or Sheri, have you found any… Have you used any foods or heard from your providers that certain foods may help with not only the cancer, but also with side effects? Jim, do you want to start with that one?  

James Bond:

Sure. One point during one of the drugs I was taking, I also developed cramps, my cramps would be at night in my legs, and I was trying to sleep, and when I brought that up to my nurse and doctor… My nurse said, Jim, this doesn’t work for everybody. It might not work for you, but if you try just having a little bottle of tonic water next to your bed, the quinine that’s in tonic water, if it’s okay with your system, that may help and… It really did help. And so, for a long time while I was taking it, whatever drug it was, I’d take a few steps of tonic water and it made the cramps go away, so that was… That was one. I’m not sure I could think of another one. Why don’t you go ahead, Sheri.    

Sheri Baker: 

Yeah well, pickle juice is another thing, talking about foods or things that may help with the cramping, but I know that there are certain drugs when you’re on them, certain treatments when you’re on them that you maybe should avoid… I think Velcade is one, you shouldn’t be drinking green tea or grapefruit, it supposedly lessens the efficacy of the drug. Asparagus is another one, but those are all things that I would just maybe eat in moderation. Having kidney issues, I’ve always had to watch what I eat in relation to dairy products, and anything that has phosphorus in it, nuts are high in phosphorus and all dairy most dairy is high in phosphorus, so my kidneys don’t process it well because of the reduced function. But as far as the actual myeloma, any foods, obviously a Mediterranean diet, Whole Foods, anything like that’s better for any of us cancer or not, but in particular with the myeloma… No, I don’t know. Anything that’s said, eat this and you’re going to do better or don’t eat this because it will make your cancer worse.  

Lisa Hatfield:

And one thing I would comment on too is if your cancer center has an Integrative Medicine department, that might be a great place to go visit to ask them that question too, and I know they have other therapies like massage and acupuncture. 

We had a nutritionist or dietician for a while, I’m not sure if she is still there, I know they have one in the cancer center itself, so that might be a place to go and look into that too. Moving on to another question that’s a little bit different, is there’s somebody who’s asking online about wanting to know a couple of people have asked about a cure, if there’s an algorithm for a cure. And I probably will ask Sheri that question in a moment because I’m not certain yet. I’ve heard some things from different webinars, but there was another question on that same one,  is it possible to have bone marrow transplant or CAR T, I’m kind of skimming along here for storage stem cells over two years or five years or ten years longer? I think that that person is asking, can those stem cells be used? I’m guessing that… I do know from my specialist, she said that she has used stored them cells thirteen years after they were collected and they were found to be viable and it was a successful stem cell transplant, so that would be something else to ask your doctor is if you have had those stem cells collected stored, how long are they viable for and are they useful if you need a time company that they can best be viability.  

Sheri Baker:

I don’t think those can be used for CAR T though, because those are… Those are different cells. They’re harvesting T-cells versus stem cells.  

Lisa Hatfield:

Yes, you’re right. So, thanks for that clarification, Sheri. Yes, they may be used for stem cell therapy or even for… I think there’s something called stem cell boosting, if somebody needs to have their stem cells boosted or transplanted. Again, something to talk to your doctor about, which should be great. This is a really quick question; I think it’s a solid… I don’t know the answer to that. I don’t know if either of you do, but can a myeloma patient be an organ donor? Do you know that either one of you?   

Sheri Baker:

I don’t think so, especially because myeloma being a blood cancer and it’s systemic running through our body, I think even if you were at MRD negative, I would not think… And I don’t know 100%, but I would think you’re not eligible. 

James Bond:

I don’t even like the mosquitoes to bite me. 

Lisa Hatfield:

Jim, when I was on Revlimid, I had three years, no mosquito bites, I think they knew not to bite me, so I’ve been off of it now for a couple of months and I have gotten eaten alive by mosquitoes just saying, maybe they know something too.  

James Bond:

Maybe, they do.   

Lisa Hatfield:

Go ahead, Jim.  

James Bond:

Well, in terms of supplements, checking with your medical team is vital, no matter what it is, wherever I mentioned about tonic water, check with your doctor first because I was amazed when I had a cold years ago, and I probably reported to my doctor is through cold medication I was taking… And he said, Jim, don’t do that without asking me that contains zinc, and zinc is bad for your kidneys, and my kidneys are okay, but they’re not great, and so that was a good lesson in things. Even if it sounds faint, it could not be hurtful. It’s wise for us blood cancer patients to check with our medical team first. 

Lisa Hatfield:

Sure, yeah, good idea, Jim, thanks for that. Sheri, there are a couple of questions that have come in via email during registration, and now I see one that’s on the chat. If people don’t have a local support group or group to go to, what are some options for them to find a virtual group or to find a group to attend?  

Sheri Baker:

Yeah, so I’m involved with the International Myeloma Foundation and our support group who prior to covid was meeting in person, but we’re now meeting virtually, sometimes maybe a hybrid where some of us are in person and some are virtual. So, if you go to myeloma.org, you can look up support groups, and you can find support groups that are meeting virtually. I mean it’ll take you to their different websites, which will tell you whether they’re meeting virtually or in person still, and so you can join those from anywhere, you just send an email to that support group leader and tell them you’d like to join their next meeting, and they can send you the link. Also, Health Tree Foundation has all virtual support groups, and they are done geographically, they’re also done whether you’re smoldering myeloma or MGUS, different people who are on different types of treatments, so they have virtual support groups based on the Mountain West, Southern California, several in Florida. 

People who have patients with young children, they both, International Myeloma Foundation and Health Tree have Spanish-speaking support groups, so there’s a lot of options out there for virtual support groups and you can join from anywhere in the country.  

Lisa Hatfield:

Thank you. Okay, that’s great advice on that, trying to skim through some of these questions also, so there were a couple of questions also, that came up regarding using novel therapies and not going down the stem cell transplant. So autologous stem cell transplant, Jim has had an allergenic transplant, which is not very common anymore, the stem cell transplants have been the standard of care, I also opted to delay mine. There was just at the most recent ASCO, Dr. Paul Richardson, who Jim knows from Dana Farber, completed the determination trial, which had two arms to it, and I’ll just go briefly through this because we’ve had several questions with two arms, one was BRD plus stem cell transplants plus Revlimid maintenance until progression. The other arm was VRD, I can’t remember now if there’s consolidation therapy, I don’t know if you know that Sheri, but no stem cell transplant, Revlimid maintenance until progression. Basically, the findings on that were really interesting, they found that progression-free survival increased for those patients was great for those patients who did have the stem cell transplant, however, that did not translate to overall survival benefits. 

The one caveat to that was for patients who reached MRD negativity after induction, they saw the same progression-free survival, it was similar for both the transplant and the non-transplant arm. It’s a really interesting study. Dr. Richardson explains it really well, I just listened to Sheri had mentioned Health Tree, so if you go to Health Tree’s website and look up, I think it’s called myeloma radio or something. Jenny Ahlstrom from Health Tree did an interview with Dr. Richardson about this determination trial, really interesting. For those of you interested in hearing more about stem cell transplant versus no, stem cell transplant., that would be something I would recommend. We’ve several questions about that. Okay, so we’ve got just a few more minutes left. We’re going to save these questions and we can reach out to you via email if you provided an email address, I do want to look up the organ donor question and might try to post that somewhere because I’m curious about that myself. We’ve got a few, too many questions to answer.  

Sheri Baker:

Lisa, can I say something real fast? There was at least one question about African-Americans. I would like to say that both International Myeloma Foundation, which is at myeloma.org they have a program called M-Power, they’ve done presentations, you can find those on myeloma.org about myeloma related to the African-American community, and also health tree also has another…  

They also have an initiative, again, specifically for black Americans, well, just African-Americans in general, no matter where we live in the world related to myeloma, and so my advice would be, go look at those and definitely, just like you do, Lisa and Jim and I both do you have to be an advocate for yourself. You have to be your own best advocate when it comes to your cancer, no matter what your ethnicity or nationality is, and so the best thing you can do is speak out, but in particular for that subset of myeloma patients, go look at those websites for more information.  

Lisa Hatfield:

Great, thanks Sheri. Jim, there were a couple of questions that came up for you, and I will mention that your book is called The Man in the Arena. it Could be ordered via Amazon. There’s a link that I think was put in the chat or in the Q and A, but one of the questions, I think it’s relevant because this does come up with some patients been treated for myeloma, the question is if you get… What types of leukemia did you get? What was your second cancer that you developed? Somebody’s asking if that was MDS? 

James Bond:

Well, it started out as MDS, and the progression from MDS to the type of leukemia, it was AML leukemia. The progression from MDS to AML is detailed in the book, I would like to make sure you understand the profits from the book go to cancer charities, so the book was only written to try to give some people some out there. 

Lisa Hatfield:

Yeah, alright, thank you, Jim. And I know there is some concern when people go on these therapies something, they need to talk to their doctor or they’re specialists about what are the short-term side effects of every medication, and also ask what are the potential long-term side effects? That’s something that I’ve always been cognizant of. and a little bit worried about, so something to not only ask the question about, but to keep an eye on too. So I just want to comment too, I’ve had a couple of people ask about chemo brain, the brain fog, the kind of fatigue and one person mentioned clumsy feelings, so when it comes to chemo brain, I have found… We can mention that to our providers and the nurses, and that it’s just something you’re going to have… But that’s hard to hear that what I have found is that when I talk to other patients, when I go to the support groups, when I have met patients like we’re doing here, and hear their stories, it almost makes me feel like I’m not alone, so when people are going through that. And there’s one person here who I saw comment on other myeloma patients who seem to know exactly what I’m describing. 

That is one of the benefits of connecting through these webinars and through some of the support groups, is we kind of understand each other, it helps us understand or support each other because we understand each other.  

James Bond:

One of my doctors gave me great advice in that regard, he said to me, Jim, you have to remember you’re older now than you used to be. So, guys, it’s not all cancer.  

Lisa Hatfield:

That’s true, that is true. So I’m going to put my email address here; this is super unprofessional and my engineer husband would be dismayed because I’m not very text-savvy. This is my email address, cure4mm@gmail.com It’s probably backwards too… Sorry about that. I put that out there, just so that if you do have questions, you could email me. I may not have the answer an oftentimes don’t have the answer, but I usually call Sheri if I don’t because she can find the resources.  Please feel free to email me directly if we have your email address. Like I said, we will get back to you on your email if you have questions, I think we’re going to have to close up this Q and A, I have so many more questions I’d like to answer. It sounds like a lot of people have the cramps, different side effects, how they deal with that, is that common? We’re going to close this up for now, we are hoping to have another one of these programs in about two months. Jim and Sheri, thank you so much for sharing your stories and your experience. 

For all of you at home, thank you for joining us, I love hearing stories of other people, that’s why I do this, I love to hear their experience, I hope that even if they’re just like I said before, one little piece of information that somebody can take from this, and ask their doctor about which we want you to do… Please do so we all have a hope for a cure. I wanted to talk about an algorithm for a cure Sheri I said that… I don’t know if there actually is. Everybody is different. There’s nothing definitive that I’ve heard Doctors say, well, if you’re 10 years out without treatments one, Doctor said Well I would call that a cure, so it just depends on who you’re talking to. I have high hopes for a cure and I hope it’s soon for all of us patients dealing with this, so thank you again. Thank you for joining us from home. We really appreciate you taking time out of your day. Have a great afternoon.  

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Is It Too Late for a Myeloma Second Opinion?

Is It Too Late for a Myeloma Second Opinion? from Patient Empowerment Network on Vimeo.

When is the best time to seek a second opinion? Dr. Joshua Richter discusses the benefit of seeking a consult with a myeloma specialist to optimize your care.

Dr. Joshua Richter is director of Multiple Myeloma at the Blavatnik Family – Chelsea Medical Center at Mount Sinai. He also serves as Assistant Professor of Medicine in The Tisch Cancer Institute, Division of Hematology and Medical Oncology. Learn more about Dr. Richter, here.

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What Are Relapsed and Refractory Myeloma?


Transcript:

Katherine:

Randall writes, “I was diagnosed last year with myeloma, and my first treatment worked, but now I’ve relapsed. Is it too late to consider a second opinion or a consult with a specialist? Would that change anything?   

Dr. Richter:

It’s a phenomenal question. There have actually been studies to show that if you engage with a myeloma center at least once within your myeloma journey, you do better than someone who has never done that. So, it is never a bad time to seek out a specialist. And one of the good things that came out of COVID is telemedicine. So, if there’s not someone right in your area, reaching out to some of our advocacy groups to help connect you to physicians like me or any of my colleagues, we’re more than happy to see anyone, I’ll see you with an MGUS that’ll never bother you, as will all of my colleagues and people who work in myeloma.   

If you’ve had one prior line, 15 prior lines, anywhere in between. So, I think it’s always a good idea to see a specialist because he or she is more than happy to work with your local doctor to optimize your treatment without having to necessarily go to another center.