What Should You Know About Emerging Myeloma Treatment Options? from Patient Empowerment Network on Vimeo.
With myeloma treatment and research advancing quickly, it’s important to stay up-to-date on the latest therapies. Myeloma expert Dr. Jeffrey Matous reviews new and emerging myeloma treatment approaches, how these therapies work, as well as the potential risks and benefits of each option. Dr. Matous also shares resources for learning about myeloma and how to access better care.
Dr. Jeffrey Matous is a myeloma specialist at the Colorado Blood Cancer Institute and the assistant chair in myeloma research for Sarah Cannon Research Institute. Learn more about Dr. Matous.
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Transcript:
Katherine:
Hello, and welcome. I’m Katherine Banwell, your host for today’s program. Today’s webinar is about advances in myeloma treatment and how emerging therapies may affect your care decisions.
Before we get into discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Well, let’s meet our guest today. Joining me is Dr. Jeffrey Matous. Dr. Matous, welcome. Would you please introduce yourself?
Dr. Matous:
Thank you very much, Katherine. I’m Dr. Jeff Matous, and I am physician at the Colorado Blood Cancer Institute, and also, the Assistant Chair in Myeloma Research for Sarah Cannon Research Institute here in Colorado.
Katherine:
Thank you so much for taking the time to join us today.
Dr. Matous:
It’s a pleasure.
Katherine:
Before we get into our discussion, would you share with the audience how the field of myeloma has changed over the course of your career?
Dr. Matous:
It’s unbelievable. I mean, I started treating myeloma back in the days of VAD, vincristine (Oncovin), doxorubicin (Adriamycin), dexamethasone (Decadron) 96-hour pumps with 40 pounds of dexamethasone that we put into patients, and wow. We didn’t have much else. We didn’t know how long to treat people, and then, in the 2000s, we have the revolution of all the new therapies, and it just keeps going and going and going. It really is an exciting to be in this field.
Katherine:
Yeah. Let’s begin by sharing some advice for navigating myeloma care on a basic level. First, what testing should take place following a myeloma diagnosis?
Dr. Matous:
Well, I think even before that, Katherine, I always tell my patients that an educated patient, like the people that are on this webinar, are the best patients, and so, when I meet a patient for the first time, we spend a lot of time educating patients even before we delve into a lot of the testing.
And I refer them to excellent resources out there. Examples of these are the International Myeloma Foundation, or the Multiple Myeloma Research Foundation.
There are others, of course, and so I really encourage my patients. In fact, I usually show them how to navigate these sites. And then, we get into testing, and testing in myeloma is multifaceted, because myeloma can affect patients in so many different ways. For example, it involves radiology studies to look for bone disease, urine work to see if the kidneys are affected by myeloma, a lot of blood work, and then, we also do a lot of testing to make sure that we understand the whole health of the patient, because that comes into play so much when we’re making treatment decisions in myeloma.
Katherine:
Yeah. What factors impact treatment decisions?
Dr. Matous:
Well, there are so many. One of the key ones is fitness, and fitness is a term that myeloma doctors use and rely on tremendously.
And fitness, more or less, falls into a couple different categories. It’s more complex than that, obviously, but generally speaking, it’s too old or too frail, or young and vigorous and I stress to my patients that vigorous or frail is not determined by chronological age. It’s determined by your physiologic age. That’s really critical, so determining what your patient’s overall fitness is, is really important in myeloma. And then, we have to assess the risk of myeloma. I think we’ll talk about this a little bit later, because not all myeloma is the same and we treat myelomas differently depending on risk, certainly. And then, patient preference is a huge part, because there are so many ways to treat myeloma these days that we explore options with the patients and sometimes patients have pretty strong opinions about, you know, one type of treatment or the other, for example.
Katherine:
What advice do you have for patients and caregivers related to working with their healthcare team in choosing a therapy?
Dr. Matous:
Yeah. I think the big thing is to do some research on your own, but really, ask questions when you see your physician. I mean, ask questions about, for example, what are my treatment options? Are there clinical trials that might be available to me? What’s on the cutting edge in myeloma? What are the standard therapies? What are the pros and cons? And a question I often counsel patients to ask when they’re seeking other opinions is if you had 100 people like me and you treated them this way, how many would do well and how many would not do so well, and prognosis, and so forth. And then, the other thing I think is really important sometimes is gauging how experienced your physician is in treating myeloma, because we actually have data that shows that patients who are treated in myeloma centers actually fair a little better than those who are not.
Involving a myeloma expert in your care doesn’t necessarily mean you have to get your care at that center. It just means you may want a myeloma expert on your team. Pretty much every doctor I know welcomes a myeloma person on their team, because the field is so rapidly evolving. It’s really hard to keep up with for a lot of people.
Katherine:
Yeah. That’s great advice, Dr. Matous. Thank you. Stem cell transplant is often considered for myeloma patients. Can you talk about who this treatment option might be appropriate for?
Dr. Matous:
Absolutely, so we’ve known for decades that, what I call high-dose chemotherapy, also called stem cell transplant, is a very effective and very potent treatment of myeloma and we’ve shown that time and time again in clinical trials, including some recent ones that are published just in 2022.
And so, high-dose chemotherapy and stem cell transplant is not for everyone. You have to be fit enough to undergo it, and this is not age determined. It’s fitness determined. And then, a lot of people live a long way from centers that perform high-dose chemotherapy and stem cell transplants.
If patients have to travel hundreds of miles, then sometimes that comes into play. Hey, I just can’t do this. I can’t get the time off, and uproot, and bring a caregiver, and travel 300 miles to get this care, so sometimes that comes into play. Physician bias definitely comes into play. We know that some physicians are stronger proponents of high-dose chemotherapy and stem cell transplant, and I fall into that category, but we have other physicians that may not even bring it up as an option to their patients. We know, for example, that African Americans and other minorities are notoriously under-referred for high-dose chemotherapy and stem cell transplant. A lot of decisions go into that, and again, this is one of those situations where if you’re transplant-eligible, that means you’re young and vigorous, and on paper, a candidate. You want to go, at the very minimum, consult with physicians that do high-dose chemotherapy and stem cell transplant and hear about that option.
Katherine:
Yeah. You mentioned high-risk myeloma earlier. How do you determine if a patient is high risk or low risk?
Dr. Matous:
Absolutely, so this is not uniformly agreed upon among myeloma doctors, but in general, we assess risk based on a few different things. One is called staging, and we stage myeloma unlike any other cancer, so it’s not staged like breast cancer, or lung cancer, or prostate cancer. It’s staged according to something called R-ISS, RISS, and you get, basically, a one, two, or a three.
Those are your stages, and in general, if your stage three, you have higher risk disease, but even more than that, we’re beginning to understand how myeloma cells misbehave at the genetic level, and we know that there are certain genetic findings inside the myeloma cell that can convey higher risk features. It’s important to stress to patients that these are not genetic findings that they were born with or can pass on through hereditary.
These are findings that occurred during the life of the patient that occurred by chance and developed inside that cell that turned into myeloma, and those are the genetic changes that we’re talking about. And we know that certain of these genetic changes confer higher risk disease. And in general, Katherine, if I see 100 people with myeloma, about 85 of the 100 will fall into what I call a standard risk category and about 15 percent will fall into what we call the high-risk category.
Katherine:
Okay. That’s really good to know. Thank you. There are several treatment classes for myeloma, such as immunomodulatory therapy and proteasome inhibitors, for example. And they’re often used together.
So, what is a combination therapy and why is it used so frequently for myeloma?
Dr. Matous:
Absolutely, so with learned over the years in myeloma that combining different types of drugs that work in different ways, we call those classes, so different classes of drugs, combining them together is the optimal treatment for myeloma.
And back in the day, we used to use two drugs. Then, we learned that three drugs are better than two drugs, and now, we have data that four drugs are better than three drugs. And so, we bring in drugs from all kinds of different categories for our patients. And we even know that for the non-transplant-eligible patients, for the older patients, for example, that combining drugs from different classes is really, really important to get the best outcomes. And in general, the three classes that we use – the four classes that we use when we’re treating myeloma patients initially include the immunomodulatory drugs, and examples of those are lenalidomide, also called Revlimid. pomalidomide, also called Pomalyst.
Thalidomide’s (Thalomid) an older drug, but we still occasionally use it.
And then, we have the proteasome inhibitors. Examples of those are bortezomib (Velcade), carfilzomib (Kyprolis), and to a much lesser extent, there’s one called ixazomib (Ninlaro). And these days, we know that CD38 antibodies are really important and really getting their foothold into the initial treatment of myeloma.
Examples of CD38 antibodies are daratumumab (Darzalex) or isatuximab. And then, usually, we combine these treatments with steroid medicines to sort of increase the effectiveness of the regiments. That’s how – those are the classes that we use when we’re treating myeloma.
Katherine:
Okay and have you learned about adding one treatment to another to another through clinical trials or is trial and error?
Dr. Matous:
Absolutely. We would not be where we are right now without the conduct of clinical trials. I always tell my patients by the time something’s approved in myeloma, and we had things approved in 2022, the field is already moving past that in clinical trials. It’s unbelievable. So, I’ll give you an example. When daratumumab, one of these antibodies, got approved by the FDA, already when it got approved by the FDA, we knew through clinical trials that were being conducted that combining it with other types of medicines was far more potent.
And we have countless examples of this, so yeah. Absolutely, so every treatment that we use in myeloma, we discovered and developed through a clinical trial. And I always encourage my patients strongly to consider clinical trials, and then, we have to explain, because when patients hear clinical trials, and I could be deviating a little bit here, Katherine.
They often think about experimentation and testing things that are unproven. In myeloma, we occasionally do that, but far and away, the overwhelming majority of our clinical trials are testing agents that we know are effective. We’re just trying to figure out what the best combination is and make sure that it’s safe for patients.
Katherine:
Yeah. Dr. Matous, some of our viewers may have already been through some therapy at some level. Let’s dive into new and emerging treatment. CAR T-cell therapy has been approved for myeloma patients and it’s certainly a hot topic right now. Can you tell us about this treatment and who it might be right for?
Dr. Matous:
Absolutely, so these T-cell therapies in myeloma are really exciting, and basically, how they work is T cells are cells that normally, in our body, they’re part of our immune system. When they see something foreign, usually, it’s a foreign infection or some kind. T cells go into kill mode and take out the foreign invader, and they’re supposed to do this with cells that are thinking about turning into cancer, but for various reasons, cancer cells can escape the T cells, and then, kind of brainwash the new system to say, hey. It’s okay if we coexist with you. No big deal. We’ll just hang out together. Okay? And that’s not okay. And so, in CAR T-cell therapy, what we do is we take the patient’s T cells.
We remove them from the blood with a procedure called apheresis, which is a machine that many patients might be familiar with through their stem cell collections.
It’s the same machine. And we collect these T cells. Then, they go to a laboratory where they are genetically modified in the laboratory using very sophisticated techniques to become myeloma killers. And we tell – we educate the T cells to become myeloma killers. We grow them up in sufficient numbers, and then, we return them to the patient. We just, basically, put them back in the patient’s bloodstream in the vein and they go and they are really effective at killing myeloma cells. And that’s CAR T-cell therapy, so it’s an amazing immune therapy. It’s way more complicated than I laid out, of course, but that’s the general thought behind it.
Katherine:
What are the risks of this therapy?
Dr. Matous:
Absolutely, so we have a lot of patients who come and ask about CAR T-cell therapy and think that it’s the same thing as getting daratumumab in the clinic or carfilzomib in the clinic.
Get it and you’re on your way. Far from that, and so, CAR T-cell therapy has a lot of risks. The risks fall into a few different categories. The first risk is called CRS, which doesn’t stand for what you think it stands for. It stands for Cytokine Release Syndrome. This occurs when the T cells recognize the myeloma cell and kill it, and when they do this, a lot of substances get released in the body that can cause a lot of symptoms, like fever, or low blood pressure, or low oxygen, and this requires specialized management to shepherd people through this.
This almost always occurs in about the first week of the treatment after the patients receive the CAR-T cells. In addition, patients who receive CAR-T cells can have what’s called neurologic toxicity that falls into many different categories. It can be something as simple as a headache, or a transient or temporary difficulty, you know, saying words or being confused, or in the most severe situation, even a seizure.
This requires a lot of close monitoring for neuro toxicity. In addition, we know that patients that get CAR T-cell therapy are, for quite a while after they receive the CAR-T cells, an increased risk for infection. It’s very suppressing of the immune system, immunosuppressive. And lastly, a lot of our patients who go through CAR T-cell therapy have low blood counts for a long time and they have to be monitored for this, might need transfusions, or some different therapies. It’s a complicated therapy for sure.
Katherine:
Yeah, so what questions should patients be asking their doctor when considering CAR T-cell therapy?
Dr. Matous:
I think the first thing, of course, is am I a candidate, because the commercially approved CAR-T cells, there are very specific criteria for who’s a candidate, who could receive it. Okay, and then, you want to know, one, if you’re a candidate. Two, what the risks and benefits are.
Three, are there alternatives besides CAR T-cell therapy. Is it too early or too late to do this? Should we think about maybe another clinical trial or one of the T-cell redirecting antibodies, for example? You want to ask those questions for sure. These treatments are tremendously expensive, of course, and so that may come into play, as well. You want to know what the experience of the center is with CAR T-cell therapy, I think, and then, you also want to know are there clinical research studies for which you might be eligible to have CAR-T cells, not just commercially available ones, because we have two that are commercially available right now, and we have scores of CAR T-cell treatments that are still in clinical trial. [22:32]
Katherine:
Yeah. Well, thank you for that, Dr. Matous.
I know many viewers will appreciate all of this information. Let’s switch gears now to another therapy we’ve been hearing about; bispecific antibodies. One has been recently approved for myeloma, teclistamab, so let’s start with what are bispecific antibodies and who might they be right for?
Dr. Matous:
And strap on your seatbelt, because there’s a whole bunch of them coming, I think, for approval. So, the T-cell redirecting antibodies, it’s a different strategy for trying to get your T cells, the patient’s T cells, to attack the myeloma cells. And in CAR T-cell therapy, it’s a single infusion. That’s the treatment. And the bispecific antibodies that I often call T-cell redirecting antibodies, because they redirect the T cells to the myeloma cell, these are given over a continuous period and it might as long as you tolerate it, as long as it’s working. It might be for a year. And they are given either under the skin as a subcutaneous injection, or in the vein.
And there are many, many different of these T-cell redirecting antibodies, the bispecific antibodies. How they work, I just do this with my patients. I hold up my hand and I say the bispecific antibodies have two hooks on them, and one hook recognizes the T cell and latches onto the T cell, and the other hook latches onto the myeloma cell. And then, what it does, it brings the T cell in proximity to the myeloma cell. Then, the T cell says “Oh, aha. I’m supposed to kill this myeloma cell,” and usually does it. Now, the part that connects the T cell and these bispecific antibodies is always the same. It’s CD3. However, the part that sticks on the myeloma cell, there are different targets, and you referred to teclistamab (Tecvayli), which was approved by the FDA, and that attaches to something on the outside of a myeloma cell called BCMA, BCMA.
But we know that other bispecific antibodies that can attach to different markers or antigens on the outside of the myeloma cell and affect the same change, and so, I think these are going to be coming fast and furious.
Katherine:
Who’s this class of treatment right for?
Dr. Matous:
I think – well, again, the FDA approval right now is for people who have seen pretty much everything. You know, you’ve had a lot of treatments. You’ve seen all the different classes of the myeloma drugs, but in our clinical research trials right now, we’re testing these as an initial therapy, in second-line therapy, after stem cell transplants. They’re being tested pretty much in every scenario right now in clinical trials, so right now, it’s when you’ve exhausted the normal treatments and you’re considering CAR T-cell therapy, or you’re considering getting treated with a drug called selinexor (Xpovio), or looking at another clinical trial. That’s when it’s the time to ask about the bispecific antibodies.
Katherine:
What are the risks and benefits of this therapy?
Dr. Matous:
The risks are pretty similar to the risks from CAR T-cell therapy, so Cytokine Release Syndrome. That usually occurs during the first week. Neurologic toxicity is, I think, less frequent with the bispecific antibodies, but infections and low blood counts definitely a concern with these bispecific antibodies, requires a lot of monitoring without any doubt.
Now, the other thing about the bispecific antibodies, there’s, right now, they’ve been in the realm of the larger centers, so myeloma centers is where people have been getting these bispecific antibodies, but there’s absolutely no question in my mind that these bispecific antibodies are going to be available through almost every general hematology, oncology practitioner’s office, but not for a while. The docs that aren’t used to giving these medicines are a little – they’re being quite cautious rolling them out in their practices right now. There are still a lot of questions as these roll out, and so, right now, I think teclistamab is still largely unavailable outside myeloma centers, but that’s going to change, I think, even over 2023 and definitely into 2024.
Katherine:
Okay. That’s really good news. For patients who want to know more about bispecifics, what questions should they be asking their healthcare team?
Dr. Matous:
Again, the same thing is – the same questions. Well, teclistamab is approved by the FDA. What other bispecifics are there? What about combinations? What about clinical trials? And then, that’s what you want to ask for sure. Then, how often do I need to come in the office? With teclistamab, the answer is weekly.
If they say for how long, it’s until it quits working or you have side effects, and then you can’t take it anymore. That’s the way the FDA label is. And so, it’s a big commitment to go on these treatments, but they’re effective. You ask me about the effectiveness of these drugs and, essentially, all the studies with these different bispecifics, including teclistamab, have been studied initially in people who have seen every myeloma treatment. They’ve had an average of about six different myeloma treatments.
They’ve seen all the drugs. They’re not working anymore. They’re in trouble. They’re in a pinch, and roughly, seven out of ten people have dramatic responses to these bispecifics when they’re treated, which we’ve never had anything like this at all in the myeloma world.
Katherine:
Wow. Do the side effects go away at some point?
Dr. Matous:
The side effects are completely manageable. Yeah and you can – by and large, you can adjust the bispecific, either the schedule or different things, to make these completely tolerable for patients.
Katherine:
Okay.
Dr. Matous:
Very few patients on our trials, with these bispecifics, who we have not been able to manage and, pretty much, handle all the – any side effect that occurs.
Katherine:
Okay. That’s good. Are there other emerging myeloma therapies that patients should know about?
Dr. Matous:
There are a bunch of other therapies. Looking at in myeloma, for sure, and a lot of these other therapies are – they’re exploring the same pathway where the proteasome inhibitors work, but in a little different way.
And proteasome inhibitors, again, just to refresh your memory, are Velcade or bortezomib, Kyprolis or carfilzomib, and there are different drugs that work in this area that are being explored. And also, for the immunomodulatory drugs, there are different what are called cell mod or cell-modifying drugs that are being developed. Also, at our recent hematology meeting last December where all the blood doctors get together, there was a lot of research presented looking at using different cells for attacking the myeloma, for bringing back an old friend, interferon, to fight the myeloma through a new sophisticated way. The field is just really going at breakneck speed right now.
Katherine:
Where do clinical trials fit into myeloma care?
Dr. Matous:
I’m biased, Katherine. I think in every step of your myeloma journey you should ask about a clinical trial, because clinical trials might be appropriate as initial therapy, second-line therapy, third-line therapy, post-transplant maintenance therapy. There are clinical trials available, pretty much, at every phase of myeloma care, and so, I think it’s important that you here about your clinical trial options when you’re talking with your physician. Now, for some folks, it’s going to be hard to get on a clinical trial. You might be a long way from a center that does very many clinical trials, but you should always, always ask about it and there are many resources for researching clinical trials that are out there, right? One example is you can call The Leukemia & Lymphoma Society and they have counselors on the phone that can guide you toward clinical trials. You can go to clinicaltrials.gov. You’re paying for it. Might as well use it and search clinical trials there. It’s a pretty easy site to use, as well.
My answer is at every phase of your journey, whenever you’re considering a treatment or a new treatment for myeloma, you want to know what your clinical trial options are.
Katherine:
How can patients and care partners stay informed about the latest myeloma research? You mentioned a couple of websites. Are there others?
Dr. Matous:
There are. There are a bunch of these that are out there, right? There’s the Myeloma Crowd. There’s – you know, this webinar. The Leukemia & Lymphoma Society in the Rocky Mountain area, we have, every year, a blood cancer conference that we put on free for patients through The Leukemia & Lymphoma Society that reviews new goings on in the field of myeloma, so there’s a lot of information out there and just a little bit of effort on the web. You can find great resources. Again, the ones I mentioned earlier I think are my top ones. Particularly, the IMF, the International Myeloma Foundation, because the physicians who run that and the people who run that, they made sure that everything that’s on there is entirely believable.
Katherine:
Yeah. Okay. Let’s get to a few audience questions that we received before the webinar. Kendall writes, “I’m in the maintenance stage following initial diagnosis and treatment. At first relapse, is it appropriate to push for stronger treatment in hopes of a cure?”
Dr. Matous:
Yeah, so the answer to that has changed. The answer is yes, and so, the – it used to be said in myeloma that your best treatment was your first treatment. Then, if you relapsed, that the treatments didn’t work as well, and the remissions did not last as long. Throw it out, so now, we get multiple chances to get really deep remissions in patients, and we should be every bit as greedy when we’re treating relapsed disease, at least initially, as we are when we treat disease at the very beginning. We know, for example, that there are many second-line therapies. I’ll just throw out some examples – daratumumab, pomalidomide dex, daratumumab Revlimid dex, daratumumab Velcade dex.
Not to mention, the T-cell therapies that can put patients in remissions that are so deep that we can’t even find myeloma cells using very sophisticated molecular techniques, so be greedy.
Katherine:
Yeah. Okay. Good advice. PEN community member, Greg, sent in this question. “Can you discuss any future or potential changes to using stem cell transplant for myeloma patients?” How would you counsel patients who do not want to pursue a transplant as a treatment option?
Dr. Matous:
So, for stem cell transplant in myeloma, for years, it’s been the standard of care for suitable patients. And every couple years, I liken this to that game we used to play called King of the Hill growing up where stem cell transplants, King of the Hill, and everyone tries to knock stem cell transplant off the hill. And so far, it really hasn’t happened. And so, transplants still, I think, an important part of the overall care for suitable patients.
For patients who are eligible and safe enough to undergo transplant. However, not all – now, will this be challenged in the future? And the answer is – I think the next challenger, and this will be a serious challenger, will be CAR T-cell therapy. And so, we have to figure out if CAR T-cell therapy or the bispecific antibodies are safe enough to give at the beginning and as effective as stem cell transplant and what the long-term side effects, how they might differ, as well, so that question is going to be tackled in the myeloma word, but it’s going to be several years until we have an answer there, for sure.
So, for my patients who are otherwise candidates for stem cell transplant, but who don’t want to do it, usually, I’ll say, “You may change your mind in the future. In myeloma, it’s important to keep all your options open and you should at least discuss with the transplant center collecting and freezing away your stem cells for a rainy day to keep that option open to you.” So, even you’re thinking of not doing it, it might be a good idea, it probably is a good idea, to harvest and store your stem cells at a transplant center.
And then, if you’re not going to do transplant up front, they key is to stay on prolonged maintenance therapy.
We know that that’s one of the keys for making survival as long as possible in patients who don’t do a transplant is to continue on ongoing maintenance therapy as long as possible. Don’t curtail your therapy just because you’re not doing a transplant.
Katherine:
Right. Okay. Well, thanks for that, Dr. Matous.
Those were all great questions. Please continue to send them in to questtion@powerfulpatients.org and we’ll work to get them answered on future programs.
So, Dr. Matous, as we close out the program, we’ve definitely learned that the field of myeloma is advancing very quickly. Would you share with us why you’re hopeful?
Dr. Matous:
Yeah. It’s because for – I’ve been doing this quite a while and I always used to tell my patients if you just hang around.
If you stay in the game, something else is going to come that we don’t even know what it is right now that’s going to impact your life, your quality of your life, the longevity of your life, and be a good treatment for you. And so far, that’s been the case. And right now, with the T-cell therapies, I’m really, really excited about how they can impact the cure of our patients. I also think that the basic research that’s going on in myeloma right now, and this is done by the real smart scientists, not the clinicians like me, but the really smart people that work in the laboratory. Learning how myeloma cells misbehave at very amazing levels, and when we learn that, it almost always results in a treatment that benefits our patients.
And so, I think that we have every reason to be optimistic for our patients with myeloma, because of all the treatments that are coming out that we know about, that we know are around the corner, and for those that we don’t even have an idea what they are yet.
Katherine:
Yeah. Well, it seems like there’s a lot to be hopeful about in myeloma care. Dr. Matous, thank you so much for joining us today. It’s been a pleasure.
Dr. Matous:
Well, the pleasure’s been mine. I love talking to myeloma patients and I would just encourage you to keep getting all the information you can. The field’s moving really fast. Just keep up with it and don’t lose hope.
Katherine:
Yeah. And thank you to all of our partners. To learn more about myeloma and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for joining us.
Hospital Charity Programs: What You Need to Know
/in Diahanna Vallentine, PEN Blog /by Diahanna VallentineUnderstanding Hospital Charity Programs
Many of you may be aware that some laws have changed regarding reporting of medical debt to credit agencies. Those new laws are most favorable to individuals. Particularly for those patients who have frequent doctor visits and accrue numerous bills. However, it is most surprising to me that many patients are not aware of the many programs that can help them pay for medical care that they have amassed. Here is the low-down on what you need to know in order to access these charitable funds if you are going to a non-profit or a for-profit hospital for your care.
What is a Hospital Charitable Program and How can you access it?
According to the IRS, Non-Profit hospitals or NFP’s are those hospitals that are not required to pay property-tax, state or federal income tax, or sales tax. Non-profit hospitals account for nearly 58% or three fifths of community hospitals and provide charity programs. Parameters are set by federal regulation in addition to charity-care policies that are set up by individual hospitals. The policies set up by individual hospitals can vary in terms of eligibility criteria, application procedures, and the level of charity provided. Hospitals bear the direct costs of providing charity care, support from donors and federal, state, and local governments may cover some or even all of these expenses.
In exchange for tax-free status, nonprofit hospitals are expected and required to distribute any additional capital back into their surrounding communities. Because of this, non-profit hospitals face additional scrutiny by healthcare policymakers concerned as to whether and how the facilities are following through and contributing to their communities in a meaningful way to justify the tax exemptions that they are receiving. They question how the funds in the communities are being spent.
You should know the type of facility you are visiting. Don’t be afraid to ask. Find out about their charity and community programs. Many states have required that this information be readily available to patients. Unfortunately this isn’t always the case. Ask for a copy of their charity plans and how to access it. Get names and the phone number of people who manage it.
For-profit hospitals are investor-owned. These facilities aim to make profits for their shareholders. Some of the largest for-profit hospital chains in the U.S. include Hospital Corporation of America,And HealthSouth. Not surprisingly, for-profit hospitals are generally among the highest-billing hospitals in the country.
How do they compare?
Day to day functions look very much the same between the two types of organizations One very distinct difference however, is that for-profit hospitals typically use considerable portions of their available budget for marketing and advertising initiatives, as compared to non-profit facilities. For-profit hospitals tend to serve lower income populations while nonprofit hospitals are generally found in communities with higher average incomes and fewer under and uninsured patients.
Consequently, nonprofit hospitals maintain higher bad-debt to net patient revenue ratios than for profits, although for profits with the highest bad debt to net patient revenue ratios tend to maintain higher ratios than nonprofit facilities.
A study done in 2020 found that nonprofit and for-profit hospitals provide similar levels of charity care-another type of uncompensated care-when examined as a percentage of total debt.
The Internal Revenue Service defines charity care or financial assistance, as “free or discounted health services provided to persons who meet the organization’s eligibility criteria for financial assistance and are unable to pay for all or a portion of the services provided”. In some cases depending on their criteria hospitals may provide charity care to both uninsured and insured patients.
Who is eligible for hospital charity care?
Hospitals have a lot of flexibility to establish their own criteria for charity care. For instance, one analysis of a large sample of nonprofit hospitals that used the Federal Poverty Level to determine eligibility for free care in 2018, found that about one in three (32%) of the hospitals required patients to have incomes at or below 200% the FPL or imposed more restrictive eligibility criteria, while the remaining sample (68%) relied on higher income caps. For discounted care, (62%) of nonprofit hospitals in the study limited eligibility to patients with incomes at or below 400% FPL or used lower income levels. The remaining (38%) rely on higher income caps.
The conditions that hospitals put on the free or discounted care can vary. Patients may need to have few assets or must live in hospital service areas. Other criteria may also become determining factors for free or reduced care.
Unfortunately, from my experience, all patients are not getting access to this free reduced care because the information is not readily available or they don’t know that they may be eligible. For example, non-profit hospitals have estimated that of the bad debt they reported in 019 reflecting 2017 expenses or earlier, about $2.7 billion came from patients who were likely eligible for charity care but did not receive it. Now it would be interesting to see how this picture has changed post COVID. These numbers are rough estimates coming from unaudited hospital reports and do not account for all facilities or for patients who qualified for charity care but still paid their bills.
Patients have a right to know the cost of care and where they can get help if they qualify. Don’t hesitate to ask what’s available at your care facility. Ask prior to services and after services are provided. Fill out your required documentation and do so in a timely manner. Be empowered to better your physical and financial health.
The Importance of Acute Myeloid Leukemia Patient Empowerment
/in Acute Myeloid Leukemia, AML Activated, AML Activated Experts, AML Newly Diagnosed, AML Programs, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara RayburnThe Importance of Acute Myeloid Leukemia Patient Empowerment from Patient Empowerment Network on Vimeo.
Why is acute myeloid leukemia (AML) patient empowerment vital? How can acute myeloid leukemia (AML) patients become empowered? AML expert Dr. Catherine Lai from Penn Medicine explains how she helps empower her patients and why educating patients is a vital part of their care.
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Long-Term Effects Acute Myeloid Leukemia Patients Should Know
Transcript:
Dr. Lai:
It’s important to empower patients so that we’re making the best decision for them…that’s in line with their goals. I think that one of the main reasons why I love what I do is because I’m able to participate in the patient’s journey, and that journey doesn’t always mean that a patient has to live longer.
So I try to ask patients or do as patients, what are their…short- and long-term goals, do they have life events that they want to get to, is there a wedding coming up, a grandchild or something that I can help them get them to so that we can make a decision together that is taking into consideration their life outside of clinic and outside of the hospital.
I like to try to spend a lot of time with my patients educating them. Some people say I sometimes give them too much information, but I don’t feel like patients can make good decisions without being properly informed. So an educated patient makes a much better…makes a much better decision than somebody who doesn’t have the information.
And then I would also say it’s important to emphasize that you and your provider and our advanced practice provider and the social worker, we’re all a part of the same team that we all want the best outcome for the patient. And so knowing that, that you have a team of people that are taking care of you and that you really need to embrace learning and understanding as much as possible so that you can make the best decision about your short-term and long-term plan for yourself. So activation tip here is don’t be afraid to ask questions, don’t be afraid to ask about resources and other ways to get information, you want the right resources, so not necessarily…everything on Google is accurate, but there are lots of good resources out there that can give you the information needed so that you can make educated decisions.
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True Patient Empowerment: Bridging the Myeloma Patient and Expert Voice
/in MM Access and Affordability, MM Blog AA, MM Blog ND, MM Blog TC, MM Newly Diagnosed, MM START HERE, MM Treatments and Clinical Trials, Multiple Myeloma, PEN Blog /by GIna CraigMultiple myeloma can sometimes feel overwhelming and complicated, but what can patients and care partners do to help improve their care? With this question in mind, the Patient Empowerment Network initiated the START HERE Myeloma program, which aims to bridge the myeloma patient and expert voice to build empowerment.
START HERE Myeloma Program Resources
The program series includes the following resources:
Patient-Expert Q&A Webinar Topics and Key Takeaways
In the PatientExpert Q&A webinar, renowned multiple myeloma expert Dr. Sikander Ailawadhi from the Mayo Clinic shares his expert knowledge to help patients and care partners fortify their knowledge and confidence, while myeloma patient and Empowerment Lead Lisa Hatfield moderates the discussion and shares some of her views as a patient. Dr. Ailawadhi and Lisa provided some in-depth discussion along with key takeaways. Some of the discussion covered:
Among some key points, Lisa shared her perspective about seeing a myeloma specialist, “There is great importance in seeking out the expertise of a myeloma specialist, even if it’s just when you’re newly diagnosed, going for a consult once and then maybe upon relapse going again, if you don’t live near it, a specialist, seeking out the expertise of a specialist is really critical.”
Dr. Ailawadhi provided his expert perspective about recent developments in multiple myeloma research and treatments. “Myeloma treatment is going through a change where immunotherapy and harnessing the body’s own immune system is becoming extremely important. And when we do that, the immunotherapy is typically very targeted, so what these drugs these agents, these terms, this alphabet soup is doing is it is targeting specific markers on the myeloma cell on the plasma cell.”
Dr. Ailawadhi also shared his excitement about the future of myeloma care. “So why is this important for everybody, whether they are newly diagnosed or relapsed or long-term survivor with myeloma, because this tells you that not only are we getting newer drugs in the same classes, we are also getting brand new classes of drugs. And you can imagine that means that those brand new strategies are ways to target the plasma cell, we know cancer cells are smart, and they develop invasive mechanisms to become resistant to drugs. But every time something gets resistant if we have a brand new mechanism to go against the disease, but that’s exciting because that’s why we are seeing deeper responses, even in very heavily pre-treated patients, because we are using newer specific, relatively safe, convenient strategies to going after the plasma cell.”
Dr. Ailawadhi has also been very involved in researching and working to improve healthcare disparities, and he shared some of this knowledge during the webinar. “Kidney dysfunction can be seen in as much as 20 percent of patients at the time of diagnosis, and there are a significant number of patients who would have kidney dysfunction even as they go on with their myeloma journey. I’m interested in these healthcare disparities. I just want to point out that patients who are African Americans do tend to have a much higher incidence of kidney dysfunction and need for kidney dialysis with myeloma at the time of diagnosis or even with treatment.”
Some program participants provided valuable testimonials about the START HERE Myeloma Patient-Expert Q&A webinar.
We hope you can use these valuable multiple myeloma resources to build your knowledge and confidence toward becoming a more empowered patient or care partner.
Empowering Providers to Explain Lung Cancer Biomarker Testing to Patients
/in EPEP, EPEP LC, EPEP LC Vignettes, EPEP Programs /by Kara RayburnEmpowering Providers to Explain Lung Cancer Biomarker Testing to Patients from Patient Empowerment Network on Vimeo.
Non-small cell lung cancer (NSCLC) clinician Dr. Jhanelle Gray from Moffitt Cancer Center has some knowledge to share. NSCLC expert Dr. Gray discusses her experience in biomarker testing and personalized combination therapeutics.
Watch to learn some of the best practices Dr. Gray has developed in treating and empowering NSCLC patients toward more culturally sensitive and equitable care.
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How Can Lung Cancer Experts in Academic and Community Settings Collaborate
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Methods to Improve Lung Cancer Physician-Patient Communication
Transcript:
Dr. Jhanelle Gray:
My name is Dr. Jhanelle Gray, and I’m a clinical investigator focused on helping patients with non-small cell lung cancer (NSCLC). My research has concentrated on evaluating novel molecular markers and developing cutting-edge, personalized combination therapeutics to improve the outcomes of patients with non-small cell lung cancer.
Biomarker testing is so important to explain to patients, and I’ve learned some best practices along the way. I think it’s very important that we take the time to think about patients when we’re making decisions, and to be open to the idea that people think differently. We all come from different backgrounds, we have different experiences. I think trying to have empathy, taking a pause, and intentionally being an active listener are very important when a patient is sitting in front of you.
We need to be careful when we use the words manage or managing. We’re not managing the patient, what we’re doing is managing the therapies, we’re helping to manage the symptoms that patients experience. We also want to take time to slow down, look at what is happening in the room as you’re talking, as the patient’s talking to you…
Language is something that is critically important. When you’re delivering negative news, people will remember about 10 percent of what you say. There’s a lot going on, so patience is very important, using words that can resonate and land, and being open to questions are key. Making sure that, again, that you don’t judge and remember that you’re delivering a lot of information. We also must share the news in a culturally sensitive way and understand the dynamics. Again, it’s reading the room.
Understand that this is an individual conversation. When the next patient comes in, you’re going to tailor the conversation to that individual. When the next patient comes in, you’re going to tailor the conversation to that individual.
There are also some things to keep in mind about management. Patients do not fail therapies, our therapies fail our patients. And even when you’re talking to patients, you need to let them know, this is one of the things that can occur. While the intention might be to prepare them for what can happen in the future, you may not realize during the conversation that this could come across as blaming.
Training is one of the ways that you can move this forward and also just pay attention, be thoughtful, and make sure that people feel as comfortable as possible when you need to deliver difficult news. Another time this becomes very important, is when you need to change therapies.
For the patients, they had gotten accustomed to a therapy, they knew how to take care of themselves, how to work with their team, and had familiarity with the side effects. And now you’re going to pivot treatments. To patients, this often feels like starting over from scratch. Thus, I think there are many sensitivities that must be considered, and we need to be thoughtful at those particular times.
I think that all providers should undergo cultural competency training. This can drive impact and help move us to the next level of reaching for that equity and honestly, lessening the inequities in healthcare.
Some things I’ve learned about communicating biomarker results with patients include:
For me, these actions are key to empowering my patients.
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Clinical Trials As a Prostate Cancer Treatment Option | What You Should Know
/in PC CT 201, PC CT201 Accessing, PC Newly Diagnosed, PC Programs, PC Treatments and Clinical Trials, PC Videos ND, PC Videos TC, Prostate Cancer /by Kara RayburnClinical Trials as a Prostate Cancer Treatment Option | What You Should Know from Patient Empowerment Network on Vimeo.
Should you consider participating in a prostate cancer clinical trial? Dr. Sumit Subudhi explains the clinical trial process, addresses common trial patient concerns, and provides key advice for trial participation. Dr. Subudhi also shares an update on promising prostate cancer research.
Dr. Sumit Subudhi is an Associate Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center.
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What Questions Should Prostate Cancer Patients Ask About Clinical Trails?
Tools for Partnering in Your Prostate Cancer Care
Tools for Choosing the Right Prostate Cancer Treatment Approach
Transcript:
Katherine Banwell:
Hello and welcome. I’m Katherine Banwell, your host for today’s program. Today we’re going to discuss prostate cancer research advances and the role of clinical trials and moving treatment developments forward. Before we meet our guest, let’s review a few important details.
The reminder email you received about this program contains a link to a program resource guide.
If you haven’t already, click that link to access information to follow along during the webinar. At the end of this program, you will receive a link to a program survey. This will allow you to provide feedback about your experience today, and it will help us plan future webinars.
Finally, before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you.
Well, let’s meet our guest today. Joining me is Dr. Sumit Subudhi. Dr. Subudhi, thanks for being with us. Would you introduce yourself?
Dr. Subudhi:
Hi. I’m Sumit Subudhi. I’m an associate professor in the GU Medical Oncology department at MD Anderson Cancer Center. And I exclusively treat patients with advanced prostate cancer. And I’ve been doing it for about a decade.
Katherine:
Thank you. I’d like to begin with an update on prostate cancer research. Would you walk us through the newer classes of treatments that are showing promise?
Dr. Subudhi:
Yeah, in clinical trials, there are classes of drugs known as androgen receptor degraders. And so, the androgen receptor is a protein that basically is the mouth of the prostate cancer. That’s how I like to describe it. And it actually allows testosterone, which is the food, to be eaten by the mouth, and it actually helps the cancer grow.
And what these drugs do is they actually degrade or break down the mouth of the cancer. And, therefore, it starves the cancer to death, and that’s actually the concept. And they seem to be showing some exciting activity in clinical trials, especially in those patients who are resistant to the second-generation hormonal drug that you may have heard of already, such as enzalutamide (Xtandi), apalutamide (Erleada), and darolutamide (Nubeqa). So, I think is something that we’re looking forward to seeing more data on.
Another class of drugs are antibody drug conjugates or ADCs.
And these are what I think of as heat-seeking missiles. So, one part of the drug actually recognizes the cancer, and the other part of the drug actually has a payload that sort of releases a bomb or sort of like chemotherapy-type agent right where the cancer’s located and kills the cancer in that way. And we’re seeing some great clinical activity in prostate cancer with this class of drugs.
And then the final one is bispecifics, and in particular T-cell bispecifics. So, T cells are part of the immune system that actually help kill the cancer.
And, unfortunately, prostate cancer, like some other cancers like pancreatic and glioblastoma, have few T cells inside it. And, therefore, a lot of the immunotherapies that many people have heard about, such as ipilimumab (Yervoy) and pembrolizumab (Keytruda), they’re not very responsive in patients with prostate cancer. And it’s because there’s few T cells in prostate cancer.
What the T-cell bispecifics do is they actually have one part of the drug that actually recognizes the cancer and the other part that recognizes T cells. So, like a bulldozer, it brings T cells right into the prostate cancer and helps kill the cancer that way.
Katherine:
Now there are some inhibitors as well. Is that correct?
Dr. Subudhi:
Yeah. So, the immune checkpoint inhibitors have been around for a while. And, basically, in combination, they seem to be more effective in prostate cancer. But when given alone as monotherapy, they’re less effective.
Katherine:
Are these treatments specifically for patients with advanced prostate cancer?
Dr. Subudhi:
All of them are actually in trials in patients with advanced prostate cancer. And I define advanced prostate cancer as either having metastatic disease, meaning the cancer has spread to other parts of the body outside of the prostate.
Examples include lymph node, the bone, the lung, the liver. But there are so few trials in patients with locally advanced prostate cancer. What I mean by that is they have high-grade prostate cancer, but it’s local, or it’s just in regional lymph nodes. And some of these classes of drugs are being evaluated in that setting as well.
Katherine:
Let’s shift to talk about your research. What are you excited about right now?
Dr. Subudhi:
So, my research focuses on immune checkpoint therapies, which are the inhibitors that you were referring to and understanding how to make them work better in prostate cancer.
And we’re finding out that in prostate cancer there’s about 20 to 25 percent of patients that appear to respond to this type of treatment. But these are patients that don’t have a lot of bone metastases. And these immune checkpoint inhibitors are given in combination. So, they’re not given alone. They’re given with either a combination of anti-CD34 and anti-PD-1 or some other form of that.
Katherine:
Prostate cancer research really can only move forward through clinical trials and patient participation in those trials. Can you briefly explain what a trial is for people who may not be familiar with the term?
Dr. Subudhi:
That’s a great question. My own father has prostate cancer. And he had the same exact question when he started his journey in that.
And so, what I explained to him is that clinical trials are experiments. They’re experiments that are done in our patients.
So, they’re drugs that are thought to mechanistically kill the cancer cell or at least change the environment around the cancer cell to help people live longer. But these drugs were actually tested in mouse models or in tissue models. And we don’t know if they actually work in patients.
And so, in clinical trials, we’re actually testing whether these drugs are safe and whether they’re efficacious or beneficial to our patients. So, I want to be very clear. When patients go on clinical trials, we don’t know if it’s going to work on them. And that’s something that they should know that they’re showing a lot of courage and risk in joining these trials.
But the other point I want to make is that every standard of care drug that is out there actually went through the clinical trial process, and they were approved because they showed benefit in a group of patients.
Katherine:
Well, how can a prostate cancer patient benefit from participating in a trial?
Dr. Subudhi:
One of the key benefits is that you get access to drugs that may actually prolong your life or even cure you and that you wouldn’t have access to in trials.
And so, some of my patients, unfortunately, they’ve exhausted all the standard of care choices that are out there. And the trial’s the only option left versus leaving it up to natural causes of demise from prostate cancer. And so, clinical trials give other opportunities to potentially live longer and have a great quality of life.
Katherine:
So, they could offer some hope.
Dr. Subudhi:
Definitely. As far as I’m concerned, yes. And, actually, with my patients, I try to not wait while they’ve exhausted all the treatments to start them on clinical trials, because I feel like we may be able to save some of these treatments in our back pocket for when they’re too exhausted to be coming to our clinic so often. And so, I like to actually try to get them enrolled in clinical trials early on in their journey with prostate cancer.
Katherine:
I’d like to define some clinical trial terminology to help patients further understand the process. Let’s start with the phases. What occurs during each phase?
Dr. Subudhi:
So, great question. Phase I is the safety phase. So, all we’re trying to do is find the right dose of the drug that is actually safe to give in the patients. And we’re looking for the maximum tolerated dose. And once we find that dose, then we use that dose to go to Phase II of the trial. And Phase II trials are looking at efficacy. So, looking to see whether the trial is giving you any clinical benefit, meaning the cancer’s shrinking or even disappearing.
Katherine:
Go on.
Dr. Subudhi:
And then the third phase is Phase III where you’re testing the current drug, experimental drug, to either standard of care or to a placebo to see whether or not you get a benefit, either a progression-free survival benefit or overall survival benefit. And so, those are the three phases of clinical trials.
Katherine:
What are the different types of clinical trials?
Dr. Subudhi:
So, they’re controlled trials. Actually, I should back up. So, there’s open-label trials where everyone that enrolls in the trial will get the experimental drug. So, there is no control arms in these trials. Then there is the control trials where you can either get the drug, or you may get a placebo or standard of care drug.
There are some trials that allow for crossover, meaning that if you’re in the placebo or standard of care arm, if your cancer progresses, you can actually cross over and get the experimental drug. But I just want to be clear that not all clinical trials have crossover. And if you’re in a control trial, I think that’s an important question to ask your doctors about that.
But the reason why we do the control trials is that we’ve learned that using historical controls – for example, we’re doing a lot of combination studies with chemotherapy, such as docetaxel (Taxotere), which was FDA-approved in 2004. So, if we’re using historical data from almost 20 years ago, it’s not the same thing as our patients that are being treated with docetaxel now, because their treatment landscape has changed so much, and our patients have changed so much.
And so, for that reason, control trials give us a better sense of how effective this experimental drug is doing as opposed to comparing it to a historical perspective.
Katherine:
What other types of clinical trials are available?
Dr. Subudhi:
So, there are a few other options. So, we talked about open-label where everyone’s guaranteed to get the drug. We talked about a controlled study where you will either get one drug or another. And another type is a randomized trial where a computer decides whether or not you’re going to actually get one drug versus another. It’s not your doctor because a lot of people think that I’m making that decision, and I’m not. It’s actually a random computer.
And some trials have 1:1 ratio, meaning a 50 percent chance that you’ll get the experimental drug versus the control drug. But other trials have 1:2 ratio or 1:3 ratio. So, that’s something that, again, you have to ask your physician of how these trials are being randomized.
Katherine:
Well, in a randomized clinical trial, the patient isn’t going to know what drug they’re being given.
Dr. Subudhi:
Actually, that’s not true.
Katherine:
Oh, it’s not.
Dr. Subudhi:
So, you bring up a great question. So, there’s a double-blind randomized clinical trial where not only the patient doesn’t know, but even the physicians and the nurses. No one except for the pharmaceutical company that’s running the trial actually knows who’s actually getting which drug. And it’s only towards the end of the trial that we unblind, and then we share that information. Well, the pharmaceutical company first shares it with the medical team who then shares it with the patient.
Katherine:
I see. Are there other common clinical trial terms that you think patients should know about and understand?
Dr. Subudhi:
I think for now those are…
Katherine:
…they’re the most important?
Dr. Subudhi:
I think to me those are the most important. And I think that sometimes too much information can bog us down.
Katherine:
Well, speaking of information, there is a lot out there, some of which may not be very reliable. And that could lead many patients to having misconceptions about clinical trials. Let’s walk through a few common concerns we’ve heard from our community about trials.
One frequent question is – will I receive a placebo instead of a real treatment? And, first, I’d like you to define placebo. And should this be a concern for patients?
Dr. Subudhi:
Right. So, placebo is a drug that looks similar to the experimental drug. For example, if the experimental drug is a blue pill, then the placebo will be a blue pill. But it will be a pill that should have no known biological activity.
If the experimental drug is given intravenously and you get it in a liquid bag, then the placebo will also come in a liquid bag. So, it will look the same. And that’s why both the medical team as well as the patients or their families will not know which drug the patients have received, meaning the experimental drug or the placebo. But the placebos are meant to not have any biological activity.
Katherine:
So, it shouldn’t be a concern to patients then.
Dr. Subudhi:
Well, the concern that most of my patients share with me when they hear about placebo-controlled trials is, “Well, if I’m not going to get the experimental drug, why should I do this? I mean what benefit does it have for me?” And so, I tell them that one of the benefits is that we are watching you very carefully.
Because we don’t know sometimes which drug you’re getting. But in some control trials, like a randomized control trial, we will know because I’m not blinded.
If you’re in the arm that’s only getting chemotherapy, well, you know you’re not getting an oral pill. So, it’s very clear to the patient what they’re getting. But if they’re getting an oral pill that’s a placebo, we’re watching them very carefully.
So, we’re watching the patients very carefully in these placebo-controlled trials. And they’re coming in often so that we’re not going to miss any devastating things happening from the cancer. In fact, we’ll pick it up earlier than if they were just getting a standard of care outside of a trial. And for that reason I tell that my patients, “Don’t be worried.” And I always make sure that I have a backup plan.
So, the backup plan is either they’re going to cross over, meaning the trial allows for them to cross over to get the experimental drug. Or I have another trial that I know that they will qualify for. Or the third alternative is that I actually have a standard of care drug that I’m ready to give them the second I have it so that they don’t have to have those concerns.
Katherine:
That’s really great information to have. Patients also often have questions about safety. So, what are the risks of clinical trial participation?
Dr. Subudhi:
So, safety is a major issue, especially more into the Phase I. The Phase I trial, if you remember, are the trials where we’re dose escalating, meaning we start off with a small cohort of patients, maybe three to five patients. And we give one dose of the drug. We see if it’s safe. If it’s safe, then we go to the next dosing level. And we just keep going until we find a dose that may be too toxic or too unsafe for our patient.
So, in the Phase I, we have less information, especially in the first-in-human drugs. But in those cases, we are watching you carefully to make sure that nothing bad happens to you.
But the problem with those trials is it requires a lot of time at the institution or with your doctor. For example, I’m doing a bispecific trial where we have to keep the patients inside the hospital for eight days, purely for safety reasons. They’re not getting the drug for all eight days. But we’re just keeping them under observation so in case anything bad happens we’re ready to react because we know that if something bad happens at their home in that first eight days, it could actually risk their lives.
So, in those cases, some trials, if we’re concerned about safety, you’ll be spending more time in the doctor’s office or in a hospital being evaluated. So, that’s the one negative. But sometimes, the trials that can be more exhausting as far as the amount of time it takes you away from your home and family are the ones that have the most reward.
Katherine:
Well, what protocols are in place to protect patients?
Dr. Subudhi:
So, when they sign up for a protocol, we are instructed to give them our best information. So, let’s say it’s a first-in-human drug. Well, usually, first-in-human drugs are tested in other mammals, such as monkeys, and we look for toxicities there. And we have signs of what’s going to happen. Sometimes, a first-in-human drug is part of a class of drugs, like I talked to you about T-cell bispecifics.
Well, there’s several T-cell bispecifics out there. And we’ve learned that this class of drugs has a unique set of side effects that they all tend to have. Some have it more, and some have it less.
But when we’re discussing this with you or the patient, we are actually going to go through each and all of these side effects. Now, me personally, my patients that go on my trials, they all get my cellphone number so they have 24/7 access to me because I know they’re taking a risk. And it’s a lot of courage to go on these trials. And it’s scary. And I want to make sure they don’t feel like they’re ever alone.
Katherine:
Another common concern we hear is that a clinical trial is only considered when there are no other treatment options available for a patient. What are your thoughts on this?
Dr. Subudhi:
There’s a lot of my colleagues in the field that feel that way. And I know a lot of patients’ misconceptions are also that way. And that’s partly because of Hollywood and movies and TV shows that we watch. But I think that many people, especially in the medical field, think of clinical trials as the last resort.
And I actually disagree with that. I think that I like to actually start my patients with one or two standard of care treatments. But after that, really start putting clinical trials in between. And we have to remember that there’s not always a clinical trial available that the patient actually meets the criteria for.
So, it’s always disheartening in clinic when I meet someone for the very first time who was referred to me because they exhausted everything. And we just don’t have any clinical trials available, or they’re so weak from the cancer and all the prior treatments that they don’t qualify for a clinical trial. And then I really don’t have anything else to give them.
So, my personal approach is to try to put clinical trials in between and always have something in my back pocket so that if they get a bit exhausted or they want to spend more time with friends and family, they can get the standard of care treatment.
Katherine:
If a patient is interested in participating in a trial, what’s the best way to find out which trials might be available for them and right for them?
Dr. Subudhi:
So, that’s a great question. I think number one is always ask your oncologist, and they’re a great resource. But also, there’s websites. So, for different types of cancer – so, example, I do prostate cancer. So, the Prostate Cancer Foundation or PCF.org is a wonderful resource that will give you a list of cutting-edge trials.
In addition, the government has clinicaltrials.gov. And that’s where you can actually type in your cancer type and different criteria, and you’ll get a list of trials.
Katherine:
That’s good to know. What questions should patients ask their healthcare team when considering joining a trial?
Dr. Subudhi:
I would ask them, “Would you do it yourself if you were in my situation?”
Katherine:
Very good.
Dr. Subudhi:
I think that’s a very important thing to ask.
Katherine:
Are there barriers that interfere with patients’ access to clinical trials? I think you touched on this but maybe if you have anything to add.
Dr. Subudhi:
Yeah. So, travel can be a major barrier. And that’s something that the pharmaceutical industry understands. And, therefore, some of the trials, especially the multicenter trials, actually allow for travel cost. That sometimes includes flights, driving, hotels, food.
So, that’s something that’s important to ask because sometimes when we’re thinking about clinical trials, we’re so anxious in the doctor’s office. And then it’s not until we go back home when we’re trying to figure out how do we get the resources to come so frequently. You’ll find out that’s sometimes travel costs.
The other thing is underrepresented minorities are something that we’ve been doing a relatively poor job recruiting to our clinical trials. Part of that is just from history that we didn’t have the safety rules in place that we do now. And underrepresented minorities were affected negatively in some of the earlier trials.
And the other thing is just the resources of getting to and from their homes to our cancer site as often as they need to because they may be the sole breadwinner in their homes and things like that. So, there are resources to try to help do this. But I still think we have to do a better job.
Katherine:
Can trials be coordinated between a local doc and the institution?
Dr. Subudhi:
So, most trials cannot. Most. But there are some that can. So, if it’s a standard of care treatment, sometimes we can have the safety visits done with the local doctors. But every time they’re going to get the treatment they have to come see us at the institution that is actually running the trial.
But most of the time, what I tell all my patients is, “I want them to have a local doctor.” Because if there’s something that happens in the middle of the night, I want to be able to say, “You’re going to go to this emergency room where this doctor works.” And then when they go there, as soon as they get admitted into the emergency room center, I talk to the ER doctor, and I say, “This is what I want to be done. These are how these drugs work.”
Because they’re not going to know what these experimental drugs are. They’re not available in the community. So, I just think it’s important to have communication, especially for our patients that are out of state. MD Anderson is in Houston, Texas. And Texas is so big that a lot of my patients live six to eight hours away, and they’re still in Texas.
Katherine:
Oh, wow. So, what are your thoughts on what could be done to overcome the barriers that some patients are experiencing? And are there resources available?
Dr. Subudhi:
So, the pharmaceutical companies are putting in more financial resources as well as a diversity resource. And when I say diversity resources, those outreach programs just to make sure that the communities that are underserved are hearing about the clinical trials because if you don’t hear about it you’re never going to join it. So, one thing is just knowledge.
And then, number two, we’re trying to create financial resources. For example, there’s Angel Flight as one example where they will pay for the flight for you. And they’ll put you on maybe a chartered plane or something or a smaller plane to defray the cost of traveling by air. So, there are things out there, but we still need a lot more.
Katherine:
But one thing patients could do is talk to their healthcare team about what resources are available for them.
Dr. Subudhi:
Absolutely. Absolutely.
Katherine:
Before we end the program, Dr. Subudhi, I’d like to get your final thoughts. What message do you want to leave the audience with related to clinical trial participation?
Dr. Subudhi:
First of all, thank you for even thinking about it. That’s the one big step. And for those of you who actually take the next step and actually join a clinical trial, again, thank you for being so brave.
I think it’s a gift that you’re giving to other fellow patients with cancer. And it’s also a gift that you’re giving to the scientific and medical community, because we are learning by your participation in the trial. And I want you to know whether the trial worked for you or does not work for you, regardless, we’re going to learn something that’s going to help change outcomes in your cancer.
Katherine:
Dr. Subudhi, thank you so much for taking the time to join us today.
Dr. Subudhi:
Well, thank you. I really appreciate it.
Katherine:
And thank you to all of our partners. If you would like to watch this webinar again, there will be a replay available soon. You’ll receive an email when it’s ready.
And don’t forget to take the survey immediately following this webinar. It will help us as we plan programs in the future. To learn more about prostate cancer and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thank you for being with us.
Managing Life With an MPN | What You Need to Know Resource Guide
/in MPN Newly Diagnosed, MPN Programs, MPN Resources ND, MPN Resources TC, MPN Resources WPS, MPN Treatments and Clinical Trials, MPN Whole Patient Support, Myeloproliferative Neoplasms, Thrive MPN, Thrive MPN Guides /by Kara RayburnDownload Resource Guide
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Un superviviente de 30 años de leucemia mieloide aguda comparte su experiencia
/in Acute Myeloid Leukemia, AML Activated, AML Activated Patients, AML Programs, Art Flatau, Patient Stories, PEN Blog /by Kara RayburnUn superviviente de 30 años de leucemia mieloide aguda comparte su experiencia from Patient Empowerment Network on Vimeo.
¿Qué podrían experimentar los pacientes con leucemia mieloide aguda (AML) en cuanto a los síntomas, el tratamiento y cómo sobrellevar la AML? Art Flatau, paciente de AML y líder de Empowerment, comparte la experiencia de su trayectoria en AML desde el diagnóstico, el tratamiento y la supervivencia de AML, y los avances en los tratamientos de AML. Art también comparte sus consejos para que los pacientes y sus cuidadores reciban una atención óptima y cómo ha encontrado un sentido a sus esfuerzos de defensa del paciente.
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Transcript:
Mi nombre es Art, y vivo en Austin, Texas. En 1992, tenía 31 años y me casé con dos hijos pequeños. Estaba en la escuela de posgrado y trabajando de tiempo completo. Durante un par de semanas, me había estado sintiendo cansado y había estado teniendo una fiebre de bajo grado. También tenía muchos moretones, probablemente porque estaba jugando rugby en ese momento. Pensé que la fatiga era porque estaba sobrecargado de trabajo y estaba durmiendo poco.
El sábado tuve un partido de rugby, pero estaba demasiado cansado para jugar más de unos minutos. Al día siguiente, estaba demasiado cansado para hacer mucho. Mi esposa y yo decidimos ir al médico el lunes.
El lunes por la mañana me desperté y había sangre en mi almohada porque me sangraban las encías. Mi esposa quería llevarme a la sala de emergencias, pero la convencí de llamar a nuestro médico. Fui al médico más tarde esa mañana. Ella notó mis síntomas, hizo un examen rápido y me envió a hacerme un análisis de sangre. Después del almuerzo, me llamó y me dijo que tenía que ir al hospital y ver a un hematólogo. Sabía que estaba en problemas.
Hablamos con el médico y dijo: «Tenemos que ver qué tipo de leucemia tienes». Qué shock. Sabía que estaba enfermo con algo que no había tenido antes. El hecho de que fuera cáncer fue un shock. No sabía que había diferentes tipos de leucemia, pero pronto descubrí que tenía leucemia mieloide aguda (AML).
Esa noche recibí transfusiones de plaquetas y glóbulos rojos. A la mañana siguiente, me hicieron una biopsia de médula ósea, me administraron más plaquetas y me operaron para ponerme una vía central. Esa tarde, menos de 24 horas después de oír la palabra leucemia en referencia a mí, empecé la quimioterapia. Todo esto era abrumador. No teníamos forma de entender cuáles eran nuestras opciones ni de obtener una segunda opinión.
Tres semanas y media después, salí del hospital sin cabello, 25 libras menos, mucho más débil pero vivo. Tuve más quimioterapia en las próximas semanas y más hospitalizaciones. Unos meses más tarde, terminé con la quimioterapia. Recuperé algo de fuerza, me volvió a crecer el pelo y traté de que mi vida volviera a la normalidad.
A principios de 1993, unos 9 meses después de ser diagnosticado, tuvimos otro susto, había recaído. Necesitaba un trasplante de médula ósea. Aunque tuvimos un poco de tiempo, unos días para averiguar a dónde ir para un trasplante, nuevamente nos costó entender el proceso. También estábamos luchando por encontrar la manera de mudarnos a Dallas por tres meses más para el trasplante. El trasplante fue una tarea larga, un mes más o menos en el hospital, un par de meses de ir a la clínica ambulatoria dos o tres veces por semana, pero lo logramos.
Ahora, 30 años después, sigo vivo. Mis hijos se graduaron de la escuela secundaria, la universidad y la escuela de posgrado y tienen carreras exitosas. Mi esposa y yo tenemos el nido vacío. Yo sigo trabajando, pero espero jubilarme dentro de unos años. Aunque me considero muy afortunado por haber sobrevivido y haber tenido relativamente pocos efectos secundarios, tengo algunos efectos secundarios con los que lidiar, incluida la testosterona baja.
Algunas cosas que he aprendido durante mi trayecto AML incluyen:
Estas acciones son clave para mantenerse en su camino hacia el empoderamiento.
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30-Year Acute Myeloid Leukemia Survivor Shares His Journey
/in Acute Myeloid Leukemia, AML Activated, AML Activated Patients, AML Programs, Art Flatau, Patient Stories, PEN Blog /by Kara Rayburn30-Year Acute Myeloid Leukemia Survivor Shares His Journey from Patient Empowerment Network on Vimeo.
What might acute myeloid leukemia (AML) patients experience for symptoms, treatment, and coping with AML? AML patient and Empowerment Lead Art Flatau shares the experience of his AML journey from diagnosis, through treatment and AML survival, and advancements in AML treatments.
Art also shares his empowerment advice for patients and care partners to ensure optimal care and how he has found a sense of purpose in patient advocacy efforts.
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Transcript:
My name is Art, and I live in Austin, Texas. In 1992, I was 31 and married with two young children. I was in graduate school and working full-time. For a couple weeks, I had been feeling tired and had been running a low-grade fever. I also had a lot of bruises, probably because I was playing rugby at the time. I thought the fatigue was because I was overworked and getting too little sleep.
On Saturday, I had a rugby game but was too tired to play more than a few minutes. The next day, I was too tired to do much. My wife and I decided that I would go to the doctor on Monday.
Monday morning, I woke, and there was blood on my pillow as my gums were bleeding. My wife wanted to take me to the ER, but I convinced her to just call our doctor. I went to the doctor later that morning. She noted my symptoms, did a quick exam, and sent me for blood work. After lunch, she called and said I needed to go to the hospital and see a hematologist. I knew I was in trouble.
We talked to the doctor and he said, “We have to see what kind of leukemia you have.” What a shock. I knew that I was sick with something I had not had before. The fact that it was cancer was a shock. I didn’t know that there were different types of leukemia but soon found out that I had acute myeloid leukemia (AML).
That evening, I received platelets and red blood transfusions. The next morning, I had a bone marrow biopsy, more platelets, and surgery to put in a central line. That afternoon, less than 24 hours after hearing the word leukemia in reference to me, I started chemotherapy. This was all overwhelming. We had no way to understand what our options were or to get a second opinion.
Three-and-a-half weeks later, I got out of the hospital with no hair, 25 pounds lighter, a lot weaker but alive. I had more chemotherapy in the next few weeks and more hospitalizations. A few months later, I was finished with chemo. I regained some strength, regrew my hair, and tried to get my life back to normal.
In early 1993, about 9 months after being diagnosed, we got another shock, I had relapsed. I needed to have a bone marrow transplant. Although we had a little time, a few days to figure out where to go for a transplant, we were again struggling to understand the process. We were also struggling to figure out how to move to Dallas for three more months for the transplant. The transplant was a long grind, a month or so in the hospital, a couple of months of going to the outpatient clinic two to three times a week, but we made it through.
Now, 30 years later, I’m still around. My children graduated from high school, college, and graduate school and have successful careers. My wife and I are empty-nesters. I am still working but hoping to retire in a few years. Although I consider myself very lucky to have survived and have had relatively few side effects, I do have some side effects to deal with, including low testosterone.
Some things that I’ve learned during my AML journey include:
These actions (for me) are key to staying on my path to empowerment.
Share Your Feedback About [ACT]IVATED AML
Becoming an Empowered and [ACT]IVATED AML Patient
/in Acute Myeloid Leukemia, AML Activated, AML Activated Resource Guides, AML Blog ND, AML Blog TC, AML Newly Diagnosed, AML Programs, AML Treatments and Clinical Trials, Patient Empowerment, PEN Blog /by Kara RayburnPatient Empowerment Network (PEN) is committed to helping educate and empower patients and care partners in the acute myeloid leukemia (AML) community. AML is shown to impact younger patients compared to other types of blood cancer. In addition, there are some marginalized communities of Black and Latinx AML patients that experience disparities in health outcomes. Recent studies in AML have shown higher mortality rates and higher rates of AML recurrence in Black and Latinx patient groups. PEN aims to help empower patients in their care. With this goal in mind, we kicked off the [ACT]IVATED AML program, which aims to inform, empower, and engage patients to stay abreast of the latest in AML care.
Disparities in AML Treatment and Health Outcomes
AML research studies show that Black and Latinx patients experience disparities in AML treatment and health outcomes. Some of the study findings include:
A recent study in Blood Advances showed that Black adolescent and young adult (AYA) patients with AML have higher mortality rates and higher rates of AML recurrence in comparison to white patients. The study compared clinical outcomes between 1983 and 2016 for AYA patients between the ages of 18 and 29. The early mortality rate of Black AYA patients was 16 percent compared to 3 percent for white AYA patients. When examining complete AML remission rates, 66 percent of Black AYA patients experienced complete remission compared to 83 percent of white AYA patients. The authors of the study looked at the research data and determined that delayed diagnosis and treatment in the Black AYA patients as well as genetic differences of AML likely led to the higher mortality rate for this group. In comparison, Black and white patients between the ages of 30 and 39 showed no significant differences in their survival rates.
Lead study author Dr. Karilyn Larkin, a hematologist at the OSUCCC – James, shared, “To our knowledge, this is the first study to examine how molecular genetic alterations contribute to outcomes in young Black people with AML compared with their white counterparts.” Study of genetics is extremely vital in developing new and refined AML treatments, and this is why it’s more important than ever for more Black AYA patients to join clinical trials to create a larger pool of participants to learn from.
Another recent study in Blood showed that Hispanic/Latinx and Black AML patients have higher mortality rates in comparison to white AML patients. The study analyzed several factors in the disparities including health care access, tumor biology, treatment patterns, ICU admission during induction chemotherapy, comorbidities, and structural racism. Neighborhood measures of structural racism were found to be a major predictor of AML mortality rates. The neighborhood measures that were tracked in the study included census tract disadvantage, segregation, and affluence. The study authors concluded that more research must be done to learn the ways that structural racism relates with different AML treatment and predictive factors to impact health outcomes. Then more actions can be taken to help decrease the health disparities for these patient groups.
[ACT]IVATED AML Patient and Expert Tips
Black and Latinx patients who more frequently experience AML disparities are key groups for patient advocacy and empowerment. AML specialists, patients, and patient advocates have pooled some valuable advice through their experiences in treating and living with AML with the goal of improving care for all AML patients. PEN has been fortunate to receive some tips from patient and AML Empowerment Lead Sasha Tanori and AML specialists Dr. Catherine Lai and Dr. Naval Daver toward patient activation and empowerment.
Sasha talked about her AML experience as a Mexican American and the delay in her diagnosis. “You didn’t go out and seek care if you are hurt, you just sucked it up, you went to work, you went to school, you did your job, you took care of your family, and that was it. If you had any type of ailments or illness, you would just rub some Vaseline and do the sana sana and just move on about your day.”
Sasha’s care in a rural healthcare setting also contributed to the delay in her diagnosis. “In my local town they had no clue what was wrong, they didn’t know it was cancer, they didn’t know what was going on. They just kept doing tests after tests after tests, and they’re on blood work, and finally, they were just like, ‘We have no clue, we’ve got to send you somewhere else. You’ve got to get in an ambulance and leave.’”
Dr. Lai advises patients to take proactive actions in their care. “Ask your physician and your oncologist when you’re talking with them about what all the newest therapies are and what would be specifically the best treatment for their specific leukemia with respect to the different mutations.”
Testing has become a key factor in optimizing treatment for each patient’s specific AML. Dr. Daver also stresses the importance of testing. “Patients, when they transformed what we call secondary AML or MDS, seemed to have a higher predilection for certain high-risk communications such as TP53, and these are best treated with ongoing frontline clinical trials at large academic centers.”
Dr. Daver also explained the importance of genetic mutations currently under study in combination clinical trials. “Patients should be checked for arrangements like MLL rearrangement NPM1 mutation, new fusions as these may be amenable to therapy with the menin inhibitors, there are multiple trials with five different menin inhibitors, single agent trials and also combination trials now ongoing across multiple centers both in the U.S. and ex-U.S.”
The future of AML care is full of hope, and Dr. Lai shared her perspective. “There are a lot of new, exciting therapies that are coming out, and that it’s really novel sequencing strategies and combinations that I think will be the future of AML.”
Clinical trial participation continues its vital role in improving AML care, and Dr. Daver took the opportunity to stress the importance of trials. “Clinical trials are critical, both for the patients themselves to get access to what we call tomorrow’s medicine today as well as potentially to help move the entire field forward.”
[ACT]IVATED AML Program Resources
The [ACT]IVATED AML program series takes a three-part approach to inform, empower, and engage both the overall AML community and AML patient groups who experience health disparities. The series includes the following resources:
Though the underrepresented AML groups of Black and Latinx patients have experienced health and care disparities, experts and patient advocates are taking action to improve care for all. By shining the light on gaps in care, PEN aims to aid in reducing these gaps along with continued research advances and clinical trial participation. AML patients can educate and empower themselves to become more confident and active partners in their care. By doing so, they can make more informed decisions for improved health outcomes. We hope you can continue to use the [ACT]IVATED AML program resources to advance your path to becoming an informed, empowered, and engaged patient.
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What Should You Know About Emerging Myeloma Treatment Options? Resource Guide
/in Evolve Myeloma, Evolve Myeloma Advocacy, MM Newly Diagnosed, MM Programs, MM Resources ND, MM Resources TC, MM Treatments and Clinical Trials, Multiple Myeloma /by Kara RayburnDownload Resource Guide
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What Should You Know About Emerging Myeloma Treatment Options?
/in Evolve Myeloma, Evolve Myeloma Treatment, MM Programs, MM Treatments and Clinical Trials, MM Videos TC, Multiple Myeloma /by Kara RayburnWhat Should You Know About Emerging Myeloma Treatment Options? from Patient Empowerment Network on Vimeo.
With myeloma treatment and research advancing quickly, it’s important to stay up-to-date on the latest therapies. Myeloma expert Dr. Jeffrey Matous reviews new and emerging myeloma treatment approaches, how these therapies work, as well as the potential risks and benefits of each option. Dr. Matous also shares resources for learning about myeloma and how to access better care.
Dr. Jeffrey Matous is a myeloma specialist at the Colorado Blood Cancer Institute and the assistant chair in myeloma research for Sarah Cannon Research Institute. Learn more about Dr. Matous.
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What Are the Phases of Myeloma Treatment?
What Is CAR T-Cell Therapy for Myeloma?
Tools for Choosing Myeloma Therapy
Transcript:
Katherine:
Hello, and welcome. I’m Katherine Banwell, your host for today’s program. Today’s webinar is about advances in myeloma treatment and how emerging therapies may affect your care decisions.
Before we get into discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Well, let’s meet our guest today. Joining me is Dr. Jeffrey Matous. Dr. Matous, welcome. Would you please introduce yourself?
Dr. Matous:
Thank you very much, Katherine. I’m Dr. Jeff Matous, and I am physician at the Colorado Blood Cancer Institute, and also, the Assistant Chair in Myeloma Research for Sarah Cannon Research Institute here in Colorado.
Katherine:
Thank you so much for taking the time to join us today.
Dr. Matous:
It’s a pleasure.
Katherine:
Before we get into our discussion, would you share with the audience how the field of myeloma has changed over the course of your career?
Dr. Matous:
It’s unbelievable. I mean, I started treating myeloma back in the days of VAD, vincristine (Oncovin), doxorubicin (Adriamycin), dexamethasone (Decadron) 96-hour pumps with 40 pounds of dexamethasone that we put into patients, and wow. We didn’t have much else. We didn’t know how long to treat people, and then, in the 2000s, we have the revolution of all the new therapies, and it just keeps going and going and going. It really is an exciting to be in this field.
Katherine:
Yeah. Let’s begin by sharing some advice for navigating myeloma care on a basic level. First, what testing should take place following a myeloma diagnosis?
Dr. Matous:
Well, I think even before that, Katherine, I always tell my patients that an educated patient, like the people that are on this webinar, are the best patients, and so, when I meet a patient for the first time, we spend a lot of time educating patients even before we delve into a lot of the testing.
And I refer them to excellent resources out there. Examples of these are the International Myeloma Foundation, or the Multiple Myeloma Research Foundation.
There are others, of course, and so I really encourage my patients. In fact, I usually show them how to navigate these sites. And then, we get into testing, and testing in myeloma is multifaceted, because myeloma can affect patients in so many different ways. For example, it involves radiology studies to look for bone disease, urine work to see if the kidneys are affected by myeloma, a lot of blood work, and then, we also do a lot of testing to make sure that we understand the whole health of the patient, because that comes into play so much when we’re making treatment decisions in myeloma.
Katherine:
Yeah. What factors impact treatment decisions?
Dr. Matous:
Well, there are so many. One of the key ones is fitness, and fitness is a term that myeloma doctors use and rely on tremendously.
And fitness, more or less, falls into a couple different categories. It’s more complex than that, obviously, but generally speaking, it’s too old or too frail, or young and vigorous and I stress to my patients that vigorous or frail is not determined by chronological age. It’s determined by your physiologic age. That’s really critical, so determining what your patient’s overall fitness is, is really important in myeloma. And then, we have to assess the risk of myeloma. I think we’ll talk about this a little bit later, because not all myeloma is the same and we treat myelomas differently depending on risk, certainly. And then, patient preference is a huge part, because there are so many ways to treat myeloma these days that we explore options with the patients and sometimes patients have pretty strong opinions about, you know, one type of treatment or the other, for example.
Katherine:
What advice do you have for patients and caregivers related to working with their healthcare team in choosing a therapy?
Dr. Matous:
Yeah. I think the big thing is to do some research on your own, but really, ask questions when you see your physician. I mean, ask questions about, for example, what are my treatment options? Are there clinical trials that might be available to me? What’s on the cutting edge in myeloma? What are the standard therapies? What are the pros and cons? And a question I often counsel patients to ask when they’re seeking other opinions is if you had 100 people like me and you treated them this way, how many would do well and how many would not do so well, and prognosis, and so forth. And then, the other thing I think is really important sometimes is gauging how experienced your physician is in treating myeloma, because we actually have data that shows that patients who are treated in myeloma centers actually fair a little better than those who are not.
Involving a myeloma expert in your care doesn’t necessarily mean you have to get your care at that center. It just means you may want a myeloma expert on your team. Pretty much every doctor I know welcomes a myeloma person on their team, because the field is so rapidly evolving. It’s really hard to keep up with for a lot of people.
Katherine:
Yeah. That’s great advice, Dr. Matous. Thank you. Stem cell transplant is often considered for myeloma patients. Can you talk about who this treatment option might be appropriate for?
Dr. Matous:
Absolutely, so we’ve known for decades that, what I call high-dose chemotherapy, also called stem cell transplant, is a very effective and very potent treatment of myeloma and we’ve shown that time and time again in clinical trials, including some recent ones that are published just in 2022.
And so, high-dose chemotherapy and stem cell transplant is not for everyone. You have to be fit enough to undergo it, and this is not age determined. It’s fitness determined. And then, a lot of people live a long way from centers that perform high-dose chemotherapy and stem cell transplants.
If patients have to travel hundreds of miles, then sometimes that comes into play. Hey, I just can’t do this. I can’t get the time off, and uproot, and bring a caregiver, and travel 300 miles to get this care, so sometimes that comes into play. Physician bias definitely comes into play. We know that some physicians are stronger proponents of high-dose chemotherapy and stem cell transplant, and I fall into that category, but we have other physicians that may not even bring it up as an option to their patients. We know, for example, that African Americans and other minorities are notoriously under-referred for high-dose chemotherapy and stem cell transplant. A lot of decisions go into that, and again, this is one of those situations where if you’re transplant-eligible, that means you’re young and vigorous, and on paper, a candidate. You want to go, at the very minimum, consult with physicians that do high-dose chemotherapy and stem cell transplant and hear about that option.
Katherine:
Yeah. You mentioned high-risk myeloma earlier. How do you determine if a patient is high risk or low risk?
Dr. Matous:
Absolutely, so this is not uniformly agreed upon among myeloma doctors, but in general, we assess risk based on a few different things. One is called staging, and we stage myeloma unlike any other cancer, so it’s not staged like breast cancer, or lung cancer, or prostate cancer. It’s staged according to something called R-ISS, RISS, and you get, basically, a one, two, or a three.
Those are your stages, and in general, if your stage three, you have higher risk disease, but even more than that, we’re beginning to understand how myeloma cells misbehave at the genetic level, and we know that there are certain genetic findings inside the myeloma cell that can convey higher risk features. It’s important to stress to patients that these are not genetic findings that they were born with or can pass on through hereditary.
These are findings that occurred during the life of the patient that occurred by chance and developed inside that cell that turned into myeloma, and those are the genetic changes that we’re talking about. And we know that certain of these genetic changes confer higher risk disease. And in general, Katherine, if I see 100 people with myeloma, about 85 of the 100 will fall into what I call a standard risk category and about 15 percent will fall into what we call the high-risk category.
Katherine:
Okay. That’s really good to know. Thank you. There are several treatment classes for myeloma, such as immunomodulatory therapy and proteasome inhibitors, for example. And they’re often used together.
So, what is a combination therapy and why is it used so frequently for myeloma?
Dr. Matous:
Absolutely, so with learned over the years in myeloma that combining different types of drugs that work in different ways, we call those classes, so different classes of drugs, combining them together is the optimal treatment for myeloma.
And back in the day, we used to use two drugs. Then, we learned that three drugs are better than two drugs, and now, we have data that four drugs are better than three drugs. And so, we bring in drugs from all kinds of different categories for our patients. And we even know that for the non-transplant-eligible patients, for the older patients, for example, that combining drugs from different classes is really, really important to get the best outcomes. And in general, the three classes that we use – the four classes that we use when we’re treating myeloma patients initially include the immunomodulatory drugs, and examples of those are lenalidomide, also called Revlimid. pomalidomide, also called Pomalyst.
Thalidomide’s (Thalomid) an older drug, but we still occasionally use it.
And then, we have the proteasome inhibitors. Examples of those are bortezomib (Velcade), carfilzomib (Kyprolis), and to a much lesser extent, there’s one called ixazomib (Ninlaro). And these days, we know that CD38 antibodies are really important and really getting their foothold into the initial treatment of myeloma.
Examples of CD38 antibodies are daratumumab (Darzalex) or isatuximab. And then, usually, we combine these treatments with steroid medicines to sort of increase the effectiveness of the regiments. That’s how – those are the classes that we use when we’re treating myeloma.
Katherine:
Okay and have you learned about adding one treatment to another to another through clinical trials or is trial and error?
Dr. Matous:
Absolutely. We would not be where we are right now without the conduct of clinical trials. I always tell my patients by the time something’s approved in myeloma, and we had things approved in 2022, the field is already moving past that in clinical trials. It’s unbelievable. So, I’ll give you an example. When daratumumab, one of these antibodies, got approved by the FDA, already when it got approved by the FDA, we knew through clinical trials that were being conducted that combining it with other types of medicines was far more potent.
And we have countless examples of this, so yeah. Absolutely, so every treatment that we use in myeloma, we discovered and developed through a clinical trial. And I always encourage my patients strongly to consider clinical trials, and then, we have to explain, because when patients hear clinical trials, and I could be deviating a little bit here, Katherine.
They often think about experimentation and testing things that are unproven. In myeloma, we occasionally do that, but far and away, the overwhelming majority of our clinical trials are testing agents that we know are effective. We’re just trying to figure out what the best combination is and make sure that it’s safe for patients.
Katherine:
Yeah. Dr. Matous, some of our viewers may have already been through some therapy at some level. Let’s dive into new and emerging treatment. CAR T-cell therapy has been approved for myeloma patients and it’s certainly a hot topic right now. Can you tell us about this treatment and who it might be right for?
Dr. Matous:
Absolutely, so these T-cell therapies in myeloma are really exciting, and basically, how they work is T cells are cells that normally, in our body, they’re part of our immune system. When they see something foreign, usually, it’s a foreign infection or some kind. T cells go into kill mode and take out the foreign invader, and they’re supposed to do this with cells that are thinking about turning into cancer, but for various reasons, cancer cells can escape the T cells, and then, kind of brainwash the new system to say, hey. It’s okay if we coexist with you. No big deal. We’ll just hang out together. Okay? And that’s not okay. And so, in CAR T-cell therapy, what we do is we take the patient’s T cells.
We remove them from the blood with a procedure called apheresis, which is a machine that many patients might be familiar with through their stem cell collections.
It’s the same machine. And we collect these T cells. Then, they go to a laboratory where they are genetically modified in the laboratory using very sophisticated techniques to become myeloma killers. And we tell – we educate the T cells to become myeloma killers. We grow them up in sufficient numbers, and then, we return them to the patient. We just, basically, put them back in the patient’s bloodstream in the vein and they go and they are really effective at killing myeloma cells. And that’s CAR T-cell therapy, so it’s an amazing immune therapy. It’s way more complicated than I laid out, of course, but that’s the general thought behind it.
Katherine:
What are the risks of this therapy?
Dr. Matous:
Absolutely, so we have a lot of patients who come and ask about CAR T-cell therapy and think that it’s the same thing as getting daratumumab in the clinic or carfilzomib in the clinic.
Get it and you’re on your way. Far from that, and so, CAR T-cell therapy has a lot of risks. The risks fall into a few different categories. The first risk is called CRS, which doesn’t stand for what you think it stands for. It stands for Cytokine Release Syndrome. This occurs when the T cells recognize the myeloma cell and kill it, and when they do this, a lot of substances get released in the body that can cause a lot of symptoms, like fever, or low blood pressure, or low oxygen, and this requires specialized management to shepherd people through this.
This almost always occurs in about the first week of the treatment after the patients receive the CAR-T cells. In addition, patients who receive CAR-T cells can have what’s called neurologic toxicity that falls into many different categories. It can be something as simple as a headache, or a transient or temporary difficulty, you know, saying words or being confused, or in the most severe situation, even a seizure.
This requires a lot of close monitoring for neuro toxicity. In addition, we know that patients that get CAR T-cell therapy are, for quite a while after they receive the CAR-T cells, an increased risk for infection. It’s very suppressing of the immune system, immunosuppressive. And lastly, a lot of our patients who go through CAR T-cell therapy have low blood counts for a long time and they have to be monitored for this, might need transfusions, or some different therapies. It’s a complicated therapy for sure.
Katherine:
Yeah, so what questions should patients be asking their doctor when considering CAR T-cell therapy?
Dr. Matous:
I think the first thing, of course, is am I a candidate, because the commercially approved CAR-T cells, there are very specific criteria for who’s a candidate, who could receive it. Okay, and then, you want to know, one, if you’re a candidate. Two, what the risks and benefits are.
Three, are there alternatives besides CAR T-cell therapy. Is it too early or too late to do this? Should we think about maybe another clinical trial or one of the T-cell redirecting antibodies, for example? You want to ask those questions for sure. These treatments are tremendously expensive, of course, and so that may come into play, as well. You want to know what the experience of the center is with CAR T-cell therapy, I think, and then, you also want to know are there clinical research studies for which you might be eligible to have CAR-T cells, not just commercially available ones, because we have two that are commercially available right now, and we have scores of CAR T-cell treatments that are still in clinical trial. [22:32]
Katherine:
Yeah. Well, thank you for that, Dr. Matous.
I know many viewers will appreciate all of this information. Let’s switch gears now to another therapy we’ve been hearing about; bispecific antibodies. One has been recently approved for myeloma, teclistamab, so let’s start with what are bispecific antibodies and who might they be right for?
Dr. Matous:
And strap on your seatbelt, because there’s a whole bunch of them coming, I think, for approval. So, the T-cell redirecting antibodies, it’s a different strategy for trying to get your T cells, the patient’s T cells, to attack the myeloma cells. And in CAR T-cell therapy, it’s a single infusion. That’s the treatment. And the bispecific antibodies that I often call T-cell redirecting antibodies, because they redirect the T cells to the myeloma cell, these are given over a continuous period and it might as long as you tolerate it, as long as it’s working. It might be for a year. And they are given either under the skin as a subcutaneous injection, or in the vein.
And there are many, many different of these T-cell redirecting antibodies, the bispecific antibodies. How they work, I just do this with my patients. I hold up my hand and I say the bispecific antibodies have two hooks on them, and one hook recognizes the T cell and latches onto the T cell, and the other hook latches onto the myeloma cell. And then, what it does, it brings the T cell in proximity to the myeloma cell. Then, the T cell says “Oh, aha. I’m supposed to kill this myeloma cell,” and usually does it. Now, the part that connects the T cell and these bispecific antibodies is always the same. It’s CD3. However, the part that sticks on the myeloma cell, there are different targets, and you referred to teclistamab (Tecvayli), which was approved by the FDA, and that attaches to something on the outside of a myeloma cell called BCMA, BCMA.
But we know that other bispecific antibodies that can attach to different markers or antigens on the outside of the myeloma cell and affect the same change, and so, I think these are going to be coming fast and furious.
Katherine:
Who’s this class of treatment right for?
Dr. Matous:
I think – well, again, the FDA approval right now is for people who have seen pretty much everything. You know, you’ve had a lot of treatments. You’ve seen all the different classes of the myeloma drugs, but in our clinical research trials right now, we’re testing these as an initial therapy, in second-line therapy, after stem cell transplants. They’re being tested pretty much in every scenario right now in clinical trials, so right now, it’s when you’ve exhausted the normal treatments and you’re considering CAR T-cell therapy, or you’re considering getting treated with a drug called selinexor (Xpovio), or looking at another clinical trial. That’s when it’s the time to ask about the bispecific antibodies.
Katherine:
What are the risks and benefits of this therapy?
Dr. Matous:
The risks are pretty similar to the risks from CAR T-cell therapy, so Cytokine Release Syndrome. That usually occurs during the first week. Neurologic toxicity is, I think, less frequent with the bispecific antibodies, but infections and low blood counts definitely a concern with these bispecific antibodies, requires a lot of monitoring without any doubt.
Now, the other thing about the bispecific antibodies, there’s, right now, they’ve been in the realm of the larger centers, so myeloma centers is where people have been getting these bispecific antibodies, but there’s absolutely no question in my mind that these bispecific antibodies are going to be available through almost every general hematology, oncology practitioner’s office, but not for a while. The docs that aren’t used to giving these medicines are a little – they’re being quite cautious rolling them out in their practices right now. There are still a lot of questions as these roll out, and so, right now, I think teclistamab is still largely unavailable outside myeloma centers, but that’s going to change, I think, even over 2023 and definitely into 2024.
Katherine:
Okay. That’s really good news. For patients who want to know more about bispecifics, what questions should they be asking their healthcare team?
Dr. Matous:
Again, the same thing is – the same questions. Well, teclistamab is approved by the FDA. What other bispecifics are there? What about combinations? What about clinical trials? And then, that’s what you want to ask for sure. Then, how often do I need to come in the office? With teclistamab, the answer is weekly.
If they say for how long, it’s until it quits working or you have side effects, and then you can’t take it anymore. That’s the way the FDA label is. And so, it’s a big commitment to go on these treatments, but they’re effective. You ask me about the effectiveness of these drugs and, essentially, all the studies with these different bispecifics, including teclistamab, have been studied initially in people who have seen every myeloma treatment. They’ve had an average of about six different myeloma treatments.
They’ve seen all the drugs. They’re not working anymore. They’re in trouble. They’re in a pinch, and roughly, seven out of ten people have dramatic responses to these bispecifics when they’re treated, which we’ve never had anything like this at all in the myeloma world.
Katherine:
Wow. Do the side effects go away at some point?
Dr. Matous:
The side effects are completely manageable. Yeah and you can – by and large, you can adjust the bispecific, either the schedule or different things, to make these completely tolerable for patients.
Katherine:
Okay.
Dr. Matous:
Very few patients on our trials, with these bispecifics, who we have not been able to manage and, pretty much, handle all the – any side effect that occurs.
Katherine:
Okay. That’s good. Are there other emerging myeloma therapies that patients should know about?
Dr. Matous:
There are a bunch of other therapies. Looking at in myeloma, for sure, and a lot of these other therapies are – they’re exploring the same pathway where the proteasome inhibitors work, but in a little different way.
And proteasome inhibitors, again, just to refresh your memory, are Velcade or bortezomib, Kyprolis or carfilzomib, and there are different drugs that work in this area that are being explored. And also, for the immunomodulatory drugs, there are different what are called cell mod or cell-modifying drugs that are being developed. Also, at our recent hematology meeting last December where all the blood doctors get together, there was a lot of research presented looking at using different cells for attacking the myeloma, for bringing back an old friend, interferon, to fight the myeloma through a new sophisticated way. The field is just really going at breakneck speed right now.
Katherine:
Where do clinical trials fit into myeloma care?
Dr. Matous:
I’m biased, Katherine. I think in every step of your myeloma journey you should ask about a clinical trial, because clinical trials might be appropriate as initial therapy, second-line therapy, third-line therapy, post-transplant maintenance therapy. There are clinical trials available, pretty much, at every phase of myeloma care, and so, I think it’s important that you here about your clinical trial options when you’re talking with your physician. Now, for some folks, it’s going to be hard to get on a clinical trial. You might be a long way from a center that does very many clinical trials, but you should always, always ask about it and there are many resources for researching clinical trials that are out there, right? One example is you can call The Leukemia & Lymphoma Society and they have counselors on the phone that can guide you toward clinical trials. You can go to clinicaltrials.gov. You’re paying for it. Might as well use it and search clinical trials there. It’s a pretty easy site to use, as well.
My answer is at every phase of your journey, whenever you’re considering a treatment or a new treatment for myeloma, you want to know what your clinical trial options are.
Katherine:
How can patients and care partners stay informed about the latest myeloma research? You mentioned a couple of websites. Are there others?
Dr. Matous:
There are. There are a bunch of these that are out there, right? There’s the Myeloma Crowd. There’s – you know, this webinar. The Leukemia & Lymphoma Society in the Rocky Mountain area, we have, every year, a blood cancer conference that we put on free for patients through The Leukemia & Lymphoma Society that reviews new goings on in the field of myeloma, so there’s a lot of information out there and just a little bit of effort on the web. You can find great resources. Again, the ones I mentioned earlier I think are my top ones. Particularly, the IMF, the International Myeloma Foundation, because the physicians who run that and the people who run that, they made sure that everything that’s on there is entirely believable.
Katherine:
Yeah. Okay. Let’s get to a few audience questions that we received before the webinar. Kendall writes, “I’m in the maintenance stage following initial diagnosis and treatment. At first relapse, is it appropriate to push for stronger treatment in hopes of a cure?”
Dr. Matous:
Yeah, so the answer to that has changed. The answer is yes, and so, the – it used to be said in myeloma that your best treatment was your first treatment. Then, if you relapsed, that the treatments didn’t work as well, and the remissions did not last as long. Throw it out, so now, we get multiple chances to get really deep remissions in patients, and we should be every bit as greedy when we’re treating relapsed disease, at least initially, as we are when we treat disease at the very beginning. We know, for example, that there are many second-line therapies. I’ll just throw out some examples – daratumumab, pomalidomide dex, daratumumab Revlimid dex, daratumumab Velcade dex.
Not to mention, the T-cell therapies that can put patients in remissions that are so deep that we can’t even find myeloma cells using very sophisticated molecular techniques, so be greedy.
Katherine:
Yeah. Okay. Good advice. PEN community member, Greg, sent in this question. “Can you discuss any future or potential changes to using stem cell transplant for myeloma patients?” How would you counsel patients who do not want to pursue a transplant as a treatment option?
Dr. Matous:
So, for stem cell transplant in myeloma, for years, it’s been the standard of care for suitable patients. And every couple years, I liken this to that game we used to play called King of the Hill growing up where stem cell transplants, King of the Hill, and everyone tries to knock stem cell transplant off the hill. And so far, it really hasn’t happened. And so, transplants still, I think, an important part of the overall care for suitable patients.
For patients who are eligible and safe enough to undergo transplant. However, not all – now, will this be challenged in the future? And the answer is – I think the next challenger, and this will be a serious challenger, will be CAR T-cell therapy. And so, we have to figure out if CAR T-cell therapy or the bispecific antibodies are safe enough to give at the beginning and as effective as stem cell transplant and what the long-term side effects, how they might differ, as well, so that question is going to be tackled in the myeloma word, but it’s going to be several years until we have an answer there, for sure.
So, for my patients who are otherwise candidates for stem cell transplant, but who don’t want to do it, usually, I’ll say, “You may change your mind in the future. In myeloma, it’s important to keep all your options open and you should at least discuss with the transplant center collecting and freezing away your stem cells for a rainy day to keep that option open to you.” So, even you’re thinking of not doing it, it might be a good idea, it probably is a good idea, to harvest and store your stem cells at a transplant center.
And then, if you’re not going to do transplant up front, they key is to stay on prolonged maintenance therapy.
We know that that’s one of the keys for making survival as long as possible in patients who don’t do a transplant is to continue on ongoing maintenance therapy as long as possible. Don’t curtail your therapy just because you’re not doing a transplant.
Katherine:
Right. Okay. Well, thanks for that, Dr. Matous.
Those were all great questions. Please continue to send them in to questtion@powerfulpatients.org and we’ll work to get them answered on future programs.
So, Dr. Matous, as we close out the program, we’ve definitely learned that the field of myeloma is advancing very quickly. Would you share with us why you’re hopeful?
Dr. Matous:
Yeah. It’s because for – I’ve been doing this quite a while and I always used to tell my patients if you just hang around.
If you stay in the game, something else is going to come that we don’t even know what it is right now that’s going to impact your life, your quality of your life, the longevity of your life, and be a good treatment for you. And so far, that’s been the case. And right now, with the T-cell therapies, I’m really, really excited about how they can impact the cure of our patients. I also think that the basic research that’s going on in myeloma right now, and this is done by the real smart scientists, not the clinicians like me, but the really smart people that work in the laboratory. Learning how myeloma cells misbehave at very amazing levels, and when we learn that, it almost always results in a treatment that benefits our patients.
And so, I think that we have every reason to be optimistic for our patients with myeloma, because of all the treatments that are coming out that we know about, that we know are around the corner, and for those that we don’t even have an idea what they are yet.
Katherine:
Yeah. Well, it seems like there’s a lot to be hopeful about in myeloma care. Dr. Matous, thank you so much for joining us today. It’s been a pleasure.
Dr. Matous:
Well, the pleasure’s been mine. I love talking to myeloma patients and I would just encourage you to keep getting all the information you can. The field’s moving really fast. Just keep up with it and don’t lose hope.
Katherine:
Yeah. And thank you to all of our partners. To learn more about myeloma and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for joining us.
Advocacy Tips From an AML Patient
/in Acute Myeloid Leukemia, AML Activated, AML Activated Activity Guides, AML Newly Diagnosed, AML Programs, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara RayburnAdvocacy Tips from an AML Patient from Patient Empowerment Network on Vimeo.
AML patient and Empowerment Lead, Sasha Tanori, shares her advocacy tips, and the importance of being honest and open with your oncologist.
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Transcript:
Sasha Tanori:
Okay, so my number one thing, I guess I could…a tip sort of that I can give to women specifically or non-gendered people, if you want kids, I would definitely say to talk to your doctor as soon as you find out, even before you start doing the chemo, if you can just really, really talk to them and see, I think there’s anything that they can do for preserving your eggs for the future, because even though it may seem like you know it’s just no, not big deal. Not everyone gets the opportunity again. I know there are some people out there who might be able to, but it’s not a guarantee. And it sucks to have that opportunity kind of taken from you in a way, and I know it’s not something that you’re thinking like, “Oh well, it’s life for death.” And…yeah, I understand, and I get that, but in the moment, it may feel that way, but you never know how are you going to feel five, six years down the line when you’re pushing 30 and you’re like, “Oh my gosh, My opportunity is gone. You know, there’s nothing I can do about it.”
So that would be my number one tip. Definitely to be honest. Be honest and open with your oncologist, find some type of tips or tricks, or even if you just need someone to talk to about the infertility…it’s definitely worth it. Another thing I would say is to be really, really open with your oncologist about everything you’re going through. Nothing is too embarrassing and I know that’s a lot easier said than done, but I think being honest about what you’re going through, whether it’s mentally, if you’re going through depression, anxiety, if you’re having suicidal thoughts or tendencies, that’s definitely something you should talk to your oncologist about, so they can help you reach out to find some type of counseling. Mental health is very, very important when it comes to this. Your mental health will make or break you during this journey, and you have to find some type of close community, whether it’s your friends, your friends, your family, or just your oncology team, like someone that you could reach out to and talk to about everything, lay it all on the table and now I’m feeling guilty because I survived that my friend didn’t, or I’m feeling anxious because I have the scan coming up, and this is the third one in like two months, you know? There’s so much things that are going on in your head and to keep it to yourself, it’s a lot and it’s not fair to you, you need to be able to speak up and tell people what you’re going through, it doesn’t matter who it is if it’s your friend, your mom, even your oncologist, but they’re going to understand and they’re going to help you.
There are lots of resources out there that will definitely make this a lot easier. Another tip I would say is, talk to your oncologist about the good, the bad, and the ugly when it comes to your side effects because if you stay quiet about it, you’re going to really regret it. There have been many times where I was just too embarrassed to be like, :Oh you know what, I have this really bad rash on my butt, and I don’t know what to do about it.” So finally, they’re like, “Why didn’t you say something? Oh yeah, we can give you a cream, or we can do this or that for you.” And you’re just like, “Oh, okay, that feels so much better. Thank you.” But at the time, you’re probably just like, “Oh my God, I’m so embarrassed, I don’t want anybody to know about this. I don’t even want to tell my parents, I don’t want to tell my friends.” But I mean, this is all related to your cancer journey, one bad side effect can lead to something else, which could lead to something else. So it’s very, very good to try and be open and honest when it comes to your side effects, your emotions, your body, if you’re gaining weight or losing weight, if you’re losing your hair again, if you’re losing your eyebrows, you know talk to them, find out if there’s any solutions that can help because…
It’ll definitely make a big difference. I would say definitely another big thing would be to try and build a community through social media. Having friends or even just strangers on your feed that you see go through the same things you go through makes you feel so much less alone. I have been able to… I’m very happy that I’ve been able to make friends on social media through Instagram, Facebook, Twitter, just start adding everybody goes on Facebook groups that are specifically for AML, so you can just type in AML recovery, AMLl survivors, AML, family groups, caregivers. There’s a lot of things out there that are definitely beneficial and it helps to talk to others about it, so you feel less alone. Definitely. So I think those would be my biggest tips for expressing your advocacy.
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How I Overcame Biases During AML Treatment
/in Acute Myeloid Leukemia, AML Activated, AML Activated Activity Guides, AML Newly Diagnosed, AML Programs, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara RayburnHow I Overcame Biases During AML Treatment from Patient Empowerment Network on Vimeo.
AML patient and Empowerment Lead, Sasha Tanori, shares how she had to overcome several biases to get doctors to take her symptoms seriously.
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Transcript:
Sasha Tanori:
So, of course, I can’t speak for everybody, but of course for me, I am Mexican American, I’m from a little small area called The Imperial Valley, it’s like at the very, very bottom of California, and it’s literally like 20 minutes away from Mexico. So right off the bat, I experienced a lot of low-income poverty type of bias, I guess you could say. And then being plus size, that was another thing when I initially first went…I remember one of the first things that they told me, I was like, “Well, first of all, you’re obese, and you need to lose weight.” And I was like, “Well, I have to deal with the bruises?” And they were like, “Well, maybe your body.” They’re just coming up with different excuses as to why, maybe it’s because I have this problem or that problem, and I was just like, “Well, no, I don’t really think that’s the issue.” So then they had misdiagnosed me, I got sent home and then when I had went back to the hospital, that was another thing they brought up again, I was in the hospital, because I had a giant bruise on my lower back, and it was like I looked like a tire mark. And they were like, “Okay, well, it says here that your BMI is high.” And I’m like, “But what…what does me being plus-sized have to do with the giant bruise on my back? This doesn’t make any sense.” No correlation, nothing.
So that was another big thing that just has always irritated me my entire life, I’ve always been a pretty big chubby girl, so if I had hurt myself they would always bring up my weight somehow it’s just like, that is looking to do with me breaking a bone or me having the cold or something dumb like that. So that was another thing that kind of bugged me whenever I was first diagnosed, they would always kind of bring up your weight, and another thing is that because I live in a low-income community, we don’t have resources like cancer doctors down here, I think there’s like maybe two and they’re not even in my local town, they’re in the town over. That’s like a 10-minute drive. So when I was first diagnosed, I was at the hospital for 12 hours. I was there with my mom and they had no clue what was wrong with me, so then I got sent to San Diego, which is like two-and-a-half hours away, and when as soon as I got there, within like 30 minutes, I was diagnosed with cancer.
So that’s how quickly they were able to catch it and everything, but in my local town they had no clue what was wrong, they didn’t know it was cancer, they didn’t know what was going on. They just kept doing tests after tests after tests, and they’re on blood work, and finally, they were just like, “We have no clue, we’ve got to send you somewhere else. You’ve got to get in an ambulance and leave.” So we were just like, “Okay.” So yeah, that was definitely something that…it has a lot to do with my culture. I live in a small mostly Mexican-driven city location, I guess the Imperial Valley is like a valley, I guess it has five or six different little towns all put together, so a majority of us are Mexican, so we’re considered low-income poverty, we don’t have a lot compared to when it comes to bigger towns like LA or San Diego or San Francisco, but yeah, I think those were my biggest issues. And then, of course, being a woman. No matter what, you’re always going to get that. People aren’t going to take you serious. We’re going to get that, “Oh, man, she’s just overreacting. She’s on her period,” or your typical misogynist stuff that people say about you. But those are my biggest things or I guess adversities that I had to go through when it came to my cancer journey.
Share Your Feedback About [ACT]IVATED AML
What I Wish I Knew Before My AML Diagnosis
/in Acute Myeloid Leukemia, AML Activated, AML Activated Activity Guides, AML Newly Diagnosed, AML Programs, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara RayburnWhat I Wish I Knew Before My AML Diagnosis from Patient Empowerment Network on Vimeo.
AML patient and Empowerment Lead, Sasha Tanori, shares what she wishes she knew and what to ask before her AML diagnosis, and the importance of advocacy.
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Transcript:
Sasha Tanori:
So, one of the biggest things I wish I knew, especially before, was the whole saving your eggs type thing for fertility. That’s one of the biggest things that I honestly really regret because here it is almost what…five, six years later, and I, unfortunately, am infertile, so it really does suck because that was something that I was really looking forward to in my life was like being a parent or being a mom, and at the time, it’s just like…everything happened so fast, it was like, Okay, we’re going to…We did the chemo, and now we’re going to do a couple more rounds and then it’s like, Oh, we found a donor, so you could have your bone marrow transplant…oh my gosh, I can’t say the word, your bone marrow transplant. I think I had mentioned it to my doctor, but he was like, “Well, if we wait, now we’re going to lose the person who’s going to donate to you.” And I was like, “Okay, well, we need to hurry up and get that done, get it over with.
So back then, I really wish I would have advocated for myself more, ask more questions and because thinking back, I’m like, I don’t mind if I would have waited until after having my eggs frozen to find another donor, I think that possibly there could have been someone else out there.
But I think it was just in such of that state of mind of like, “I need to hurry and get this done. It’s life or death, I’m going to possibly die type of situation.” But you know I’m like, “No, I think I would have been okay if I would have waited another month or so until after I froze the eggs.” But you live and you learn, and there’s not really much you can do about it now, unfortunately. But at the time, I really wish that I would have spoken up and advocated for myself more if I would have known that that was going to happen, because like I said, five years later infertile can’t really do anything about it, you know? Yeah, my life is saved, but I can’t have kids though, so you just kind of think it heartedly about it, but yeah, that’s one of the things I really wish I would have advocated for myself more about. For now, I think everything else has been kind of…it’s been good. I mean, I’ve taken it step by step, by day, you just got to put on your big girl panties or put on your big girl shorts, I guess you could say, and just continue going about your day, you gotta wake up, do your job, take care of your family, take care of your life.
Share Your Feedback About [ACT]IVATED AML
How Does One’s Culture Impact AML Care?
/in Acute Myeloid Leukemia, AML Activated, AML Activated Activity Guides, AML Newly Diagnosed, AML Programs, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara RayburnHow Does One’s Culture Impact AML Care? from Patient Empowerment Network on Vimeo.
AML patient and Empowerment Lead, Sasha Tanori, shares how her culture impacted her care and how her diagnosis opened her family’s eyes to start taking care of themselves.
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Transcript:
Sasha Tanori:
My culture made a big significance in my care, because it was something that my family, especially my dad with the Mexican side, it wasn’t something that you did. You didn’t go out and seek care if you are hurt, you just sucked it up, you went to work, you went to school, you did your job, you took care of your family, and that was it. If you had any type of ailments or illness, you would just rub some Vaseline and do the sana sana and just move on about your day. So when I started getting the bruises and the tiredness and the fatigue, my dad was just like, “She’s just clumsy, she’s just making it up, or she’s being dramatic,” and it was never a big deal to anybody, especially with him. You know my mom, she’s a little bit more on my side with everything, so she was like, “Oh yeah, you know, maybe you should go to the hospital. Maybe you should go check this out, maybe you should go do that.”
But finally, it was my cousin who convinced me about like a month after all, I was going through all of that to go to the hospital, and still my dad was just like, “Man, she’s going to go to the hospital and be there for 12 hours, and nothing’s going to be wrong.” He was so sure that everything was fine, so finally, when I had went, and I found out I had cancer, I think it really opened my dad’s eyes to realize, “Wow, maybe she wasn’t lying.”
Maybe she wasn’t making it up. But yeah, I think it was a really big step on my part being Mexican American, to finally take that step to take care of myself, especially physically and mentally, you know? God forbid, you have depression or anxiety in a Mexican household, they’re just like, “No, no, no, there’s no…what do you mean you don’t feel good? Just walk outside, drink some coffee, you’ll be fine. Get over it.” So yeah, I think it really opened my dad’s eyes, especially seeing me so sick for him to kind of realize, “Wow, you know, this stuff is kind of serious.” Because now he goes to the doctor, he takes his medication, he takes care of himself more.
But yeah, having that type of cultural background in your household, it’s really hard to express how you’re feeling when it comes to your mental and physical health. It’s hard to walk up to your dad and be like, “Hey, Dad, I’m not feeling good, can you take me to the doctor? Or can we talk about this?” And she’s like, “No, no, no. We don’t talk about stuff. No, we don’t go to the doctor, we don’t do any of that stuff, we have to stay strong and work and take care of the family.” We’re not allowed to be sick, we’re not allowed to take care of ourselves pretty much, I think…
Thankfully, me taking care of myself has kind of helped him as well to take care of himself.
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