Multiple Myeloma Archives

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

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How Can I Get the Best Multiple Myeloma Care No Matter Where I Live?

July 30, 2020/in Diverse Partners, MM Access and Affordability, MM Newly Diagnosed, MM Treatments and Clinical Trials, MM Videos AA, MM Videos ND, MM Videos TC, MM Webinars, Multiple Myeloma, PEN Blog /by Kara Rayburn

How Can I Get the Best Multiple Myeloma Care No Matter Where I Live? from Patient Empowerment Network on Vimeo.

“Myeloma patients who are African-American and Hispanic typically get to the right treatment much later. In a lot of cases they may not get to the right treatment at all. We also know that the burden of cost of care is much higher for minority patients.” – Dr. Sikander Ailawadhi

There is a critical need to raise awareness of the treatment gaps among minority populations living with multiple myeloma. How can myeloma patients get the best care no matter where they live when factors like age, geography, socioeconomic status, ethnicity, gender, and insurance type heavily influence the path to empowerment?

In this replay, a panel of distinguished myeloma experts and patient advocates tackle how we achieve health equity for multiple myeloma patients no matter geography.

Transcript:

Rebecca Law:

Hello, I am Rebecca Law, and this is a Patient Empowerment Network program produced by Diverse Health Hub. We know the myeloma burden and treatment gaps among blacks highlights the critical need for raising awareness and working towards equal access for treatment. What we are really talking about is, “How can we achieve health equity and improve outcomes in multiple myeloma?” Our distinguished panel is at the heart of research for multiple myeloma patients of color, seeking a path for empowerment.

First on our panel is Diahanna Vallentine, a Board-Certified Patient Advocate and Myeloma Financial Coach with Myeloma Crowd. We also have Dr. Sikander Ailawadhi, Professor of Medicine in the Division of Hematology and Oncology at Mayo Clinic in Florida. We have Dr. Saad Usmani, Chief End Plasma Cell Disorders Program Director at Levine Cancer Institute, Atrium Health. And we also have Jenny Ahlstrom, founder of Myeloma Crowd. Thank you all for being a part of such an important program Diahanna, rooting out disparities and roadblocks within the myeloma community is a big priority for you. Why is that?

Diahanna Vallentine:

Well, disparities in healthcare include community access to care, ability to pay for care, feeling empowered to ask questions about care, understanding treatment plans, and many other variables that is impossible to pin point one that’s the primary driver, I guess, of this disparity. And as a black person, having been a caregiver and advocate to my husband who had myeloma for 12, almost 13 years, prior to him being diagnosed with myeloma and then going back into the hospital for various reasons, I found that there was a huge disparity in the way that he was treated. And some of those things have led me to do what I’m doing now with the Myeloma Crowd. There was an attempt for him to be put on an experimental treatment while he was on life support, with a doctor coming into the room with other doctors saying that, “This is what we’re going to do.” And I stood up and said, “Well, what is this treatment? What is the experiment? What were the outcomes of the experiment?”

And the doctor got in my face, six inches, yelling at me, and said, “You don’t have the right to ask questions, we’ll normally do this and you’ll find out about it later.” And that was very disparaging, especially since posted on all of their walls outside and one outside of my husband’s door, was, “Families are very included in the care and treatment of their patients”, because they found the outcomes were so much better. And that was not the case. That was one incident. Another incident was him being in the hospital, in rehab, and was almost comatose when I walked into the room, and they were insisting him get rehab treatment post hospitalization.

He was basically comatose. His resting blood pressure was 172 beats per minute. And it took me hours to get the doctor to even come in to see him before they actually agreed to release him to go back into intensive care, which was only a block away. And he died during that transport, and they weren’t able to resuscitate him at the emergency room doors. So, just the ability to be able to talk to the doctors, to be strong enough, empowered enough to question the doctors, to find out what the cost of care is going to be so that you can plan and make the appropriate and prudent decisions based on care, I found was somewhat lacking in the minority population.

And it had nothing to do with the education of the patient there, sometimes it had nothing to do with their economic backgrounds or situations, it was a matter of stereotypes that were being used, sometimes unconsciously, and I hope it’s unconscious, by some of the caregivers during his treatment. And as a result of that, some of the decisions that were made were not necessarily in a financial benefit of the patient, and therefore, when treatment plans were put into place there was a cost associated with getting help… Not just financial cost, but there was a physical cost and a mental cost for getting out of those treatments to get into better treatments. And that’s led me to work with Myeloma Crowd where they’re just so open, and to trying to help people in unserved communities, specifically people of color, to have the appropriate access and to have the appropriate treatment based on their needs.

Rebecca Law:

Thank you for sharing your story. Now, Dr. Ailawadhi, for our audience who might not understand what health disparities in myeloma look like, can you give a high-level definition and overview, please?

Dr. Sikander Ailawadhi:

Sure. Thanks Rebecca, and thanks for having me on this panel. Diahanna, first of all, I think I want to take a second and really appreciate you for having the courage to share that. And not only just to share that, but to devote your life and devote your time to this extremely, extremely important cause. We keep talking about so many advancements that are happening in the field of myeloma, and by all means there are. I don’t want to discount any of those advancements and how outcomes have improved tremendously for patients across the globe. But when we start looking at the details and the nitty gritty and we see that how the benefit or the impact of a lot of those things are different even based on race and ethnicity, it’s stark. So, Rebecca, you asked me to just talk about a very high-level discussion about what kind of disparities exist in myeloma? Or what do disparities mean when it comes to multiple myeloma?

So, there are disparities at a lot of different levels, just taking the case of multiple myeloma, specifically. So, for example, patients from different racial and ethnic backgrounds tend to present in a different way. So, African-Americans present with the diagnosis at a much younger age. The presence of the myeloma precursor called MGUS, or monoclonal gammopathy of undetermined significance, is seen much more frequently in African-Americans. Even I would say include Hispanics into that, because Hispanics also get diagnosed at a much younger age. The disease presents very differently, for example, African-Americans will present much more frequently with anemia or kidney dysfunction, but they will present with much lesser bone fractures in multiple myeloma.

So those are disparities in how the disease presents or how it becomes kind of evident. Now, when we talk about disparities, one of the very stark shades of disparities in myeloma is how treatment is given or made available to patients, especially when we talk about racial minorities. So, there has been a lot of literature looking at this, and it has been seen that patients who belong to racial and ethnic minorities, they do not get access to the same kind of treatment in the same timely fashion. So, for example, African-Americans and Hispanics are much lesser likely to get a transplant when it comes to myeloma treatment. Now again, I don’t want to say that improvements have not happened. The rates of transplant, rates of new drug use, have increased across the board for all races and ethnicities, but when we compare, the rate of that increase has been much slower in African-Americans.

In fact, one of the studies that we looked at, some national data, it took Hispanics a little more than 100 days from the time of diagnosis to get to initial treatment with Bortezomib, which is a cornerstone drug and is used almost across the board for initial therapy. So, the treatment, there are disparities. And similarly, there are some outcome disparities. While on the face of analysis, it’s been said several times that races or different racial sub-groups will have similar outcomes, I think the important thing to understand is that biologically, African-Americans have a less aggressive disease, which means that if given the right kind of treatment, African-Americans are supposed to in fact have a slightly better outcome than even whites. And there’s one large analysis that came out of the VA system from the Dana-Farber group last year, which was actually highlighting that, because they were able to show that in an equal access system like the VA, African-Americans actually had better outcomes, or better survivable. So, there are disparities at the time of presentation, at the time of how treatment is received, how timely is the treatment, and in fact also, outcomes. Because I would say that having an equal outcome for a racial minority is not necessarily lack of disparity, that may actually be underscoring the disparity.

Rebecca Law:

Wow, that’s very interesting. Dr. Usmani, can you speak to key studies you and your colleagues are leading, which focus on racial inequities plaguing myeloma research, and what are some of the commonalities you observe in the studies?

Dr. Saad Usmani:

Thank you, Rebecca. So, I want to acknowledge the fact that we’re getting this panel together to talk about some very important difficult questions when it comes to racial disparities here. And when I moved from the myeloma program in Arkansas to the City of Charlotte to start a myeloma program, one of the striking things that we saw was the proportion of African-American patients that we were seeing in our practice, almost 35% of the patients that we care for in our myeloma program are African-American. And before we came here, when we looked at the data beforehand out in the community, there was clearly disparity in access to care, as well as to cellular therapies, as well as clinical trials to African-American patients. So, within our whole department of hematology, across the board, not just for myeloma but for other hemalignancies, looking at racial disparities and how to overcome them became one of the big clinical research foresights.

And so, our group, as well as lymphoma and leukemia colleagues, have actually looked at the survival outcomes, the disease features at baseline and other features to document the clinical characteristics within our population. And I echo what Sikander has already mentioned, that we find that the disease appears to be less biologically aggressive in African-American patients, and when we give them the same access to care, their outcomes are actually better than the Caucasian patients. And I believe Sikander has already published some data looking at the SEER database from previous years, but in their novel therapies with the availability of produce from inhibition, immunomodulatory drugs, as well as monoclonal antibodies, we’re finding this difference is pretty clear. African-American patients do benefit more than other groups when it comes to myeloma therapy. So, our ongoing focus now within our community at large is to embark on an ambitious screening study for our county, which has close to 3 million inhabitants, and more than 30% of those are African-Americans. So, what we are trying to do is create a campaign of awareness, as well as start a screening project to identify plasma cell disorders early within our county.

Rebecca Law:

Well, that’s great. Dr. Ailawadhi, if there’s anything you’d like to add in regards to studies or commonalities that you have observed in studies.

Dr. Sikander Ailawadhi:

Rebecca, one thing I want to add to that, and just like Dr. Usmani mentioned, and I’m also kind of building upon a little bit on what Diahanna mentioned in the beginning. When we talk about disparities, there has been a lot of literature showing how disparities exist and where they exist. I think now we’re to the point that we need to try to address them, and we need to try and figure out how to overcome them. And in fact, whenever this term is brought up in the literature or in discussions, it’s always brought up very frequently, “Yeah, it’s got to be an access issue”, that African-Americans or Hispanics are going to be lower socioeconomic status and there could be inequalities and that’s why they don’t have access to the right treatment. But I think what Diahanna just mentioned at the beginning of the discussion, that underscores that very thing. They did not have lack of understanding, they did not have maybe lack of insurance or healthcare availability, ’cause her husband did have access to rehab facility, ICU, etc. But there are probably stereotypes, and the last thing we want to do is stereotype our research into that box.

So, for example, one of the studies we’re doing right now is exactly on this thought process of clinical trial and participation. So, we know that in the US, less than 20% of individuals who are eligible to go onto clinical trials, go onto clinical trials. And when it comes to minorities, the number is somewhere about 5%-7% only. So, while we talk about the fact that, “Well, minorities need to get onto clinical trials”, yeah, sure, but we need to understand why this disparity exists. So, we’re doing a study where we’re actually bringing that understanding to try and see, “Well, why don’t patients want to go on clinical trials?” I mean, as it is, even with whites, we do a pretty dismal job. So, we’re doing a questionnaire. The goal of that is to run the questionnaire in about 500 cancer patients who come to Mayo Clinic as an initial kind of visit, and we’re asking them what are their thoughts about clinical trials. And the hope is that we’re going to get about 200 whites, 150 African-Americans and 150 Hispanics, and then try to compare that. Because unless and until we know where the gaps are, we won’t be able to address that.

So, the only thing I want to add to what Dr. Usmani rightly mentioned was that it’s important not to box our research also in stereotypes, and to really try our best to try and overcome these disparities, which I think a movement has already started. I think it is gaining momentum. I think we need to just keep working in that direction, whether it is from lawmakers, from patient advocacy groups, from large foundations and societies, and even from pharma. I think there is a lot of support that is building towards it, we just need to keep moving in that direction.

Rebecca Law:

I agree. I think we all agree Dr. Ailawadhi or Dr. Usmani, what do we know about how myeloma behaves in patients of color versus other races? Are there differences in risk factors? And if yes, what do we know?

Dr. Sikander Ailawadhi:

So, Rebecca, what we have learned from studying myeloma and its precursor diagnosis, MGUS, in African-Americans and Hispanics and Whites is that in African-Americans MGUS presents much more frequently. In African-Americans, the conversion from MGUS to myeloma happens at a younger age. In African-Americans, myeloma is diagnosed at a significantly younger age. And for that matter, I would say also in Hispanics it is diagnosed at a significantly younger age. We know that in African-Americans, the myeloma risk stratification or the risk category is different because African-Americans, in general, have a less aggressive kind of variety of multiple myeloma so they tend not to have the high-risk mutations, which means that if they are given the similar treatments, we should be getting better outcomes, not just the same. So that is what is known about the biology and presentation.

Dr. Saad Usmani:

Yeah. So, in addition to what Dr. Ailawadhi has already mentioned, I’d say that in our experience, within our prospective data base we have close to 5000 individuals with various plasma cell disorders, and a third of those are African-American. For patients who’ve got active myeloma, I would echo what Sikander has already mentioned, African-American patients are presenting at a younger age. So, we see in our database a median of 58 years of age at the time of diagnosis with active myeloma requiring therapy, compared to 63 years for the Caucasian patients. And then even Hispanics are presenting at a similar age to the Caucasian patients, at least in our data set. But interestingly, we see a numerically lower incidence of high-risk features in these patients, and they do quite well in terms of treatment.

And the pattern of relapse is also very interesting. We are finding more biochemical relapses where we actually have time to act on that relapse, and with some luxury of time at hand, and get those patients to either clinical trials with much ease compared to the Caucasian patient population. And then I want to build on the availability of clinical trial piece that Sikander had mentioned. We have, at our program, been able to get a 30% plus enrollment of African-American patients on clinical trials. And a big part of that has been creating awareness about disease, about getting diagnosed early, within the community and building those community partnerships.

Rebecca Law:

Jenny Ahlstrom, thank you again for joining us. I have a question for you. So, in the COVID era where health disparities have been exacerbated for vulnerable communities, how can myeloma patients not get lost in the shuffle and become a disparity within a disparity?

Jenny Ahlstrom:

I think this is a big challenge. I think it’s a challenge for myeloma patients, and I think the first two months we were all stunned. From what I’ve heard now, the facilities and the myeloma specialists are doing an incredible job now in treating patients. But we wanted to know what the impact was on COVID in the myeloma population, including racial disparity groups. And so, we opened a study using our HealthTree platform for — I think we have 1100 patients who joined the study in a four-week period, which I was surprised and delighted at. And we’re trying to figure out, “How were they impacted? Did they have worse access to care? Who are the high-risk patients?”

I think that’s a topic that is really important, especially when you think about Black or Hispanic communities, because is it just that somebody has hypertension or diabetes regardless of race? Or is it something else that’s another layer on top of an access issue, or what Diahanna was talking about before? Just somebody, a practitioner, taking somebody seriously when they say they come in with COVID symptoms and needing the right care regardless of race. So, we decided to run that study and we’re working on the results right now to just learn more about that. But it does… COVID adds another layer of challenge for all patients, and I think even more so for the disparity groups. And that can include rural groups as well, in addition to ethic communities.

Rebecca Law:

Well, I can’t wait to see those results, and thank you for that information. What I would like to shift to now is exactly what you were talking about, myeloma care in underserved communities, and eliminating treatment gaps. So Diahanna, we know many of the roadblocks to treatment boil down to access and the web of financial toxicity. In the work you do, how are you helping patients make informed decisions, and can you please provide some examples?

Diahanna Vallentine:

I think one of the main variables that causes the disparity overall before even treatment is needed is a mistrust in the African-American community as a result of past historical treatments, experiments that were done on the African-Americans. And I find that talking to anyone… If I were to walk into any community, African-American community, or under-served community, that is one of the first things. They’re going to be mistrustful of me. And it’s a very difficult barrier to overcome. And that also leads over into African-Americans contributing, being donors, African-Americans participating in trials. It all feeds over into everything that’s done in the African-American community or underserved community in regards to health care.

Some of the things that I am doing is I try to be available to talk to anybody, no matter what time of day it is, talk to them where they’re wanting… Where their needs are, listening to them and not making pre-conceived notions about who they are, where they come from, what their experiences are. And that has been one of the things that I have been practicing every day when I talk to patients, whether it’s in person or on the phone. I have a unique perspective having been a financial advisor for more than 20 years, being a caregiver to a myeloma patient, being a patient advocate and not having the fear… I guess that’s something I grew up with. Not having the fear to talk to people or ask people questions, and let them know from the on-go that we all have something in common.

And once you establish that area of trust, then everything else comes easy. When you realize that that could be me in that bed, that could be my mother, my father in that bed, then we all become as one, per se. And so, some of the things that I do is I talk to a person at the level they want to be spoken to. I ask them how they want me to communicate with them, how often they want me to communicate with them, is there anyone else they want to be involved in it. And then I take that information that they’re trying to gather and find resources for them so that financial toxicity will not become an issue, so that we can discuss with their caregivers what the treatment plan is, what the anticipated cost is, so that we can work around some of those financial barriers that they may come up against. And whether that’s looking at their current insurance plans, insurance plans they may have access to in the future, whether it’s through a spouse or their employers, or Medicare, Medicaid. We try to anticipate what those things are so that the financial toxicity does not become a burden, which again, affects their care, because stress affects your care and your outcomes.

25:21

Rebecca Law:

Absolutely. Absolutely. Also, Diahanna, what do you see as some of the main drivers of health disparities in targeting the underserved communities?

Diahanna Vallentine:

Wow. That’s a big one. That’s one of the things that… I don’t know if there is enough knowledge in the underserved communities to know what resources are available. A lot of people have not heard of The Myeloma Crowd. A lot of people are not aware of The Leukemia and Lymphoma Society because, unfortunately, I felt that myeloma was a step child of The Leukemia and Lymphoma Society because that’s all you heard about, was leukemia and lymphoma. You never heard about the myeloma. And when I became the board chair, I realized, “Oh my God, there’s that other blood cancer out there that nobody’s talking about, the one that my husband actually succumbed to.” So, I think getting into the community so people can… Where they are, not where we expect them to be, but where these people actually are, to let them know there are resources available to them. And making it an open environment, a non-transparent environment where the trust will come and that those disparities can be seen and they can be acknowledged and worked on at that point.

Rebecca Law:

Great, thank you. The other question, and anyone can chime in. You hear stories all the time like what Diahanna described earlier. Can patients truly get the best myeloma care no matter where they live?

Diahanna Vallentine:

I found that even people who are in regions where there are specialists for myeloma found that they didn’t know there were specialists there or they had to go travel outside of their treatment facility to get care. And for some people, that is an extreme hardship not only to be able to have the access to travel, the funds just to be there, the days of testing that might be involved, understanding what their insurance is going to cover or won’t cover if they’re in or out of network. There is a huge problem with that. There aren’t enough… I don’t think there is enough information in the places where those people are, whether it’s the doctors allowing this information to be in their plan. Unfortunately, a lot of African-Americans, when they do seek medical care, they’re comfortable with those doctors. They’ve been with those doctors for a long time and they have a difficult time separating or using that doctor to collaborate with a specialist. And I think therein is an inherent problem, is letting them know what resources are available, and then how to get to those resources.

Dr. Saad Usmani:

So, I want to build on what Diahanna has shared. I think in general, in the year 2020, there are more resources available to myeloma patients across the country. There’s more awareness by virtue of having organizations like The Myeloma Crowd doing good work and spreading knowledge amongst the myeloma patient community, as well as for caregivers. There’re aren’t enough myeloma experts in the world to see every myeloma patient, but there’s no reason why any given myeloma patient regardless of which geographic area they live in can’t have a myeloma expert in their back pocket, if and when they need help. It takes quite a bit for a patient to develop trust and a relationship with their own physician. And our job as myeloma experts is not to take care of every myeloma patient, but be there for them and provide guidance if and when needed, along with the physicians who are already caring for that patient. And in the era of COVID-19 pandemic, and Dr. Ailawadhi can speak to this as well, the capability to do virtual consultations and provide distance consults and advice to patients has also opened up a big opportunity for patients throughout the country. I do not see a reason why all myeloma patients can’t get the best optimal care in today’s day and age.

Dr. Sikander Ailawadhi:

I completely agree with that. And actually, I was going to add exactly the same thought process, that this is a very difficult time for everybody, myeloma patients and for literally the whole of this world with the COVID-19 situation. But I think this whole concept of telehealth has come about as somewhat of a silver lining. So I can tell you, I can share from at least my experience right now in clinic, that when we get a request for a patient to be seen, the way we have it set up is that actually a triage request comes for one of us in the disease group to confirm that the patient is actually coming to the right physician. So if, let’s say, someone by mistake may have said myeloma, but the patient has leukemia, then one of our job would be to make sure that rather than coming in and then the patient finding out that, “Hey, you are with the wrong doctor”, they end up seeing the right doctor even from get-go. So, when we’re doing these triage requests and we’re sorting them out, patients are actually reaching out and asking directly, saying, “Hey, I would like another opinion. I’ve been told I have a diagnosis of myeloma or smoldering myeloma or MGUS or something, I’m going to be sending in my records and I would like to do a virtual consult.”

And so, patients are actually reaching out that way, which gives us this opportunity that, “Hey, not everybody can come here, let alone the fact that we cannot accommodate.” And I’m not even going get to the point of we not being able to accommodate. We’re doctors, we’re institutions, health care workers… This is our job, to help as much as we can. But looking at it from the patient’s perspective, the patient cannot always have the resources to come. It’s not appropriate for us to expect, “Hey, we’ll build a hospital, you’ll have to come here.” I think in today’s day and age, when we can do so much more with technology, it’s… Healthcare was actually in some way lagging behind, but I’m glad that it’s coming up to that step. So, to be able to get the patients to get the consult, to get the opinion, to get that reassurance that what they are doing, what they’re getting in their area, in their community is actually right, because I can tell you and I think Dr. Usmani will agree with that, that nine out of 10 times, we actually fully agree with what’s being done for the patient or by the physicians, it’s just that they may not have access to a clinical trial, so they’re seeking it or the patient is just looking in for that reassurance.

So, I think now we have that opportunity to provide it for the patient. So, what we need is awareness, so that the patients, like Diahanna mentioned, they feel confident about asking for an opinion, asking for a consult and knowing that they have resources where Myeloma Crowd helps, where Leukemia Lymphoma Society helps, where International Myeloma Foundation helps, where they kind of bridge this knowledge gap. Once the patients know… It’s easier said than done to say, “Hey, be your own advocate.” But if a patient or a caregiver does not know what advocacy is, they’re not going ask the right questions. So, we need to educate them and we have the tools that we can help more patients across the world, across the country, and bring the advancements of myeloma care to everyone.

Jenny Ahlstrom:

Dr. Ailawadhi, I think that point is so important, and Diahanna referred to it earlier. Let me give you an example. So, we went across the country and visited 50 cities while we were building this HealthTree platform, we probably met with 850 patients. And we wanted to see all ethnic communities, all rural, big cities. We just wanted to see across the board what was happening. And as part of that, we met a woman named Cassandra. She had smoldering myeloma, she had severe back pain, she was just enduring this back pain for over a year. And because we met and we built that relationship, that one-on-one relationship, she felt comfortable calling me and saying, “I have this really severe back pain, what do I do about it?” She didn’t know that… She was going to a major cancer center, but no myeloma specialist necessarily, and I had to say, “What you’re enduring is inexcusable, you really need to push.” And she had been pushing, but she didn’t really know how.

So, I set her up with an appointment with a myeloma specialist that was just an hour drive away, and then she was able to get the proper care. So sometimes it’s this training of, “How are you an advocate? What education do you need to acquire so you can ask the right questions of your doctor? You should be seeing a specialist; how does that process work?” And just really walking the patients through this, because it’s confusing and they don’t feel good, and there is a lot. So, it’s really important, the points that both of you made.

Rebecca Law:

Yes, it is. Going back to telemedicine, do you guys think telemedicine will be a game changer for underserved communities, especially patients facing a myeloma diagnosis?

Jenny Ahlstrom:

I say yes. Completely.

So, in our study, we saw that, we asked that question, “Did you use telemedicine beforehand?” And either they said yes or sometimes, and it was at 9% prior to COVID, and then after COVID it’s at 60%. So, patients are using it, and I’m hearing some of the researchers, and I’m sure they’ll have their own experiences, say, “We never realized how much we could do via telehealth.”

Dr. Saad Usmani:

So, this is a time of innovation. I think we’ve seen a lot of innovative approaches to taking care of patients come about over the last four months. One of the limiting steps in doing virtual medicine however, is the reality that it does require insurance coverage. And so, Medicaid allows the virtual visits to be a billable service during the COVID pandemic, but I think right now there’s a push to reverse that ruling by the end of August. So, it will take a lot of partnership between patient support group organizations to actually push for this, because there’s no reason why you want to go back to the dark ages. You want to have these platforms available to provide better care for patients. It just opens up so many possibilities of providing optimal care to patients, especially in the remote areas. So, I think this is going to be a very active area of discussion, and will require engagement with legislature on parts of both physician organizations as well as patient organizations.

Rebecca Law:

Okay, let’s move on to disparities and its impact on myeloma clinical trial participation. So, Dr. Ailawadhi, the demographic in America is changing quite rapidly, does this mean clinical trial participation is more critical than ever?

Dr. Sikander Ailawadhi:

It absolutely is, Rebecca. There is no way to kind of shine enough of a bright light on this topic. And I’m glad that we’re talking about it. There is more interest and also more thought process being put behind it. So, you’re right in saying that the demographics are changing quite a bit. So, we don’t know how and when we’ll get all the 2020 census data; but over the past few years, census bureau has been releasing updates where we know that Hispanics are the fastest growing racial ethnic group in the country and followed by Asians. And African-Americans are already a huge part of our demographic. So whatever we’ve discussed before when we said that patients can present at different ages, they can present with different symptoms, we also know from our experience of other diseases like hypertension, high blood pressure, diabetes, that the way certain drugs are metabolized could be inherently genetically different between, let’s say, African-Americans and Whites.

Unfortunately, in myeloma, we don’t know any of that because clinical trial participation overall in cancer and also especially in myeloma, in a disease where African-Americans may be affected by this diagnosis way more, the clinical trial participation is extremely low, in single digits. Which means that all the drugs that we utilize are FDA-approved, have become FDA-approved with not enough safety or benefit data in racial ethnic minorities. Now, I’m not saying that there is any problem in using those drugs; we use them, they benefit patients outrightly. But I think that underscores the importance that clinical trial data and generating robust safety and benefit data in all racial ethnic groups, considering that our demographic 10 years from today is not going to be what it is now or what it was 10 years ago. So, understanding the dynamics of drugs, their impact, their benefit, their safety, in all racial ethnic groups becomes extremely important. And that can only be done when either clinical trials are specifically done in those populations, which, as Diahanna mentioned very well, appropriately before, it’s a very challenging thing because there has been a traditional lack of trust there. So, it becomes very important.

I can tell you that I had mentioned earlier that we’re doing a questionnaire just to understand why patients don’t want to go on clinical trials, or do they not want to go on. It’s just maybe, it’s access issue. And I distinctly remember… I cannot take an anecdotal look at it because I’m a clinician, I’m a researcher, I’m not supposed to look at the end of one. But I’ve had at least two specific cases where newly diagnosed multiple myeloma African-American patients who’ve come, and I’ve very clearly explained to them that I’m just wanting them to consider going on this study with a one-time questionnaire. No samples, no bone marrows, no treatment, no nothing. All I want to understand is what they think about clinical trials. It’s a five-page questionnaire, 50 questions, multiple choices. We’re not taking any other data. Both these patients took the… They signed the consent, so they took the questionnaire. They took it home; we could do it electronically but they said they wanted to think about it.

And for both these patients, they called back and they said, “You know what? I don’t feel comfortable with going on a clinical trial even though it’s a one-time questionnaire. I’m going to kind of respectfully decline.” And I initially could not understand the whole thought process because it seemed, “Well, it’s just a questionnaire. We do so many surveys online.” But I’ve talked to them several times since then, and the thought process, which Diahanna brought, up about that lack of trust, that came out loud and clear. These patients are still receiving their treatment with us because initially there were concerns, they said, “Well, if I don’t do the questionnaire maybe this doctor won’t treat me.” They’re receiving their treatment with us, they are continuing, we’re good, we have a very good relationship, but they decided not to go on those. So, I think clinical trial participation is extremely important, especially because of the changing demographics, like you said.

Rebecca Law:

Jenny, so many experts try to tackle this problem. What are organizations like Myeloma Crowd doing to open up access to those who have access issues?

Jenny Ahlstrom:

Well, I think this is a very common problem, and one I think a lot of the different foundations are working on. It’s a big challenge, as you heard. Like when we were talking about the clinical trial aspects, it’s hard to join a clinical trial regardless of your race, and then you layer on the trust issues or travel or those types of issues and it becomes even harder. I think we need to go back to what Diahanna said. To me, this is all about relationships. So, if you’re building solid on-the-ground relationships with individuals, they’re more likely to understand the importance of becoming your own advocate or getting educated about the disease so you can ask the right questions. We’re trying to build a lot of different tools for patients to use, but then you need to go back and invite them to use them or kind of teach them to use them because you have that relationship. So, for example, we’re building HealthTree University, where Dr. Usmani and many others, and Dr. Ailawadhi, hopefully you as well, will participate in teaching myeloma patients about multiple myeloma. So, we have over 30 classes planned, over 600 lessons. And that’s something that people would be able to go and get educated about myeloma at home, so that when they go to the clinic and are talking to their doctor, they start to ask better questions. So, that is kind of the beginning.

Rebecca Law:

Dr. Usmani, as you can see by turning on any news station, racism is very real in the US. Do you think some experts may be less willing to give patients state-of-the-art treatment, given they feel they have a special resilience?

Dr. Saad Usmani:

I think the racism question, it’s certainly at the top of our minds right now, especially in the context of recent events. But it has been inherently prevalent, and there’s been more of a divide in our country over the last five to six years. And I don’t want to get too political, but the bottom line is this issue is real. And for the most part, the physician community tends to be agnostic to it because with our job is to serve humanity, our job is to provide the best possible care. There are going to be, just like in any other profession, average, above average and exceptional physicians.

Diahanna Vallentine:

I have experienced it in my family with my husband, and I have been in hospital as an advocate watching other people experience the same thing. And one of the prevailing things that’s really surprising to me is that even in a educational setting in medical schools, there are a lot of physicians in training, and physicians that are practicing, believe that African-Americans do not have the pain, their skin is too thick, they don’t experience pain as other Caucasians may experience, and therefore may not be prescribed pain medicine as appropriate. And that could become very, very difficult, especially if you’re treating a chronic and sometimes a very painful disease as myeloma, with bone fractures and things. And so, their health outcomes, I think, are somewhat mitigated or lessened as a result of that type of treatment. My husband did experience that, and it became very difficult for us to finally get a physician to say, “Yes, he does have… Yes, there is a fracture, a multiple fracture. And there is bone pain associated, and aspirin and Tylenol is just not going be enough to manage his pain.” And I’ve witnessed that on several occasions with other people as well. So that is an ongoing problem. When we talk about disparities in access to, or getting into the community, I think one of the predominant problems is African-Americans and maybe people of color will be more likely to associate people that they relate to.

And that person of relation may be another African-American, a professional maybe in a community that can talk to them. Because now they see a face that looks like them. They have a face that may have experienced some of the same things they are going through, and they are open and willing to accept recommendations or information from people that they can relate to. And I think a lot of professional communities do not have that available, whether it’s through lack of education for minorities to be in positions like that, or just a lack of understanding what the actual community needs are.

Rebecca Law:

We tackled a big topic today, and as I close, I want to ask each of you to answer a question. So how can we achieve health equity in the care of multiple myeloma patients sooner rather than later?

Diahanna Vallentine:

I think we all appreciate the fact that the African-American or underserved communities do not have enough people that are either willing or know that we need to go into those communities the way they are, meet the people the way they are, so that we can provide them with education, with resources, that are available. I think that is one of the first steps. And fortunately, or unfortunately, with the racial problems we’re having in our country right now, a lot of governors and mayors are opening up opportunities that we got to get into the communities. And I think this might be a great opportunity for the myeloma community to perhaps step up and say we would like to be presented or represented in the community when there are funds and when the interest is really high. I think that if we could establish a foot-hold that way, then we can just go on and work toward lessening that gap and disparities in the undeserved communities.

Sikander Ailawadhi:

Diahanna, that was really nicely put. I think what I can add to that is that we basically are already seeing a lot more discussion, a lot more focus coming up to this topic of racial disparity in multiple myeloma at different levels. So, what we need to do is continue to build upon that momentum, continue to build the relationships so that there is actually a combined force from various aspects. I would love to do telehealth going forward, but like Dr. Usmani brought up, if there is not enough reimbursement or leadership or legislation to support all of that, then our wants and needs may not be served fully. So, I think developing those relationships, developing those partnerships and moving forward as we’re gaining momentum to address this particular question, this particular issue is extremely important. And I feel it is more hopeful and exciting in the future as compared to where we’ve come from.

Jenny Ahlstrom:

I would just reiterate what Diahanna said. I think it’s in building the programs that are simple enough for everybody to understand and utilize that makes just the usability of them as available as possible, and then building that relationship in those communities where the needs are. I totally agree with what Diahanna’s saying, you need to take the programs to the people where they are and not to expect them to come to your programs.

Dr. Saad Usmani:

I agree with everything that has been said on this topic. And I have to say that this is going to be a two-way dialogue, a two-way partnership. That’s the only way that this can succeed moving forward. Racial disparities are an inherent part of our everyday life, whether it’s in healthcare, whether it’s in other interactions we have with each other, and there’s a lot of historic perspective and context to that. This is not going to be a quick fix; this is going to be a long-term process. But it will have to be a partnership. And I’m talking on a broader level with myeloma care and better survival outcomes for all myeloma patients as the goal. But then looking at the overall societal goals as well, and trying to see how we can remove the inherent biases that everyone has and develop more fruitful productive relationships going forward in our respective geographic regions, but overall in our country as well. I think that’s the overarching theme and tone of the conversations we’re having in the country right now, and it certainly makes sense to do that for myeloma care as well.

Rebecca Law:

I want to take the time to thank each and every one of you for joining me today. On behalf of the Patient Empowerment Network and Diverse Health Hub, I am Rebecca Law. Thank you.

A Multiple Myeloma Advocate’s Uphill Battle to Care

July 28, 2020/in MM Access and Affordability, MM Newly Diagnosed, MM Programs, MM Videos AA, MM Videos ND, MM Vignettes, Multiple Myeloma /by Kara Rayburn

A Multiple Myeloma Advocate’s Uphill Battle to Care from Patient Empowerment Network on Vimeo.

Diahanna Vallentine of Louisville, Kentucky shares how advocating for her late husband of 28 years following his myeloma diagnosis “felt like an uphill battle.” As any care partner in this position, Diahanna’s multiple myeloma research uncovered more questions than answers. When she sought clarity from her husband’s care team, she was met with hostility. The toll of emotional and financial toxicity ate into their life savings. Following her husband’s passing, Diahanna has made it her life’s mission to help other patients and families facing a multiple myeloma diagnosis avoid inequitable roadblocks to care.

Diahanna’s advice,“Find your voice, talk to your doctor and feel empowered to question your care team. These actions are key to staying on your path to empowerment.”

Transcript:

My name is Diahanna, I’m from Louisville, Kentucky. My husband of 28 years was diagnosed with Multiple Myeloma in 2005 after a prior misdiagnosis and treatment. My family and I were devastated. Prior to his diagnosis, we were busy with two sons in high school, he was working and coaching and I was starting up my own investment firm. Following the myeloma diagnosis, I became my husband’s advocate and caregiver. As his myeloma progressed, our path to empowerment didn’t come without trials and tribulations.

In the hospitals, I found other families overwhelmed by emotional and financial toxicities. Advocating for my husband felt like an uphill battle. While he was on life support, his doctors wanted to do an experimental treatment and I asked “What was the experiment?

And what were the outcomes of the experiment?” The doctor got six inches from my face and said, “You don’t have the right to ask questions, we’ll normally do this and you’ll find out about it later.”

This was very disparaging. The hospital had signs indicating the importance of family involvement in treatment for better health outcomes. What was it about my situation that did not allow me to have the same opportunity?

I soon realized it had nothing to do with my education, or economic background, it was a matter of stereotypes and unconscious bias. And as a result, many suggested treatments were not in my husband’s best interest, or our family’s financial best interest. We soon found ourselves using our life savings.

Since the passing of my husband, I’ve made it my mission to help others facing the same challenges we did.

I want to let patients, caregivers and families facing a multiple myeloma diagnosis know there is hope. Don’t give up. There are resources available to you. Find your voice, talk to your doctors. Be strong. Feel empowered to question your care team, and find out what the cost of care is going to be from the outset.

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

Everyone should be able to get the best myeloma care no matter where they live.

Comprehensive Hematological Cancer Centers

June 25, 2020/in AML Newly Diagnosed, AML Resource ND, CLL Newly Diagnosed, CLL Resources ND, Gerri Smoluk, MM Newly Diagnosed, MM Resources ND, MPN Newly Diagnosed, MPN Resources ND, PEN Blog /by Gerri Smoluk

Gerri Smoluk

Dr. Gerri Smoluk was a PEN Acute Myeloid Leukemia (AML) Network Manager. Gerri was a drug development scientist and patient advocate who was diagnosed with AML in 2016. She made it her mission to help patients ask the right questions of their care teams. She used her knowledge to help patients learn about medications for and the latest information about their disease. Using her science background, Gerri developed tangible resources to help other AML patients. She felt she had an advantage and made it her mission to use that advantage to help empower others to make better decisions. Gerri passed away July 27, 2020. Her legacy lives on inspiring other Network Managers to help more patients become empowered.

Can Multiple Myeloma Be Cured?

April 10, 2020/in Multiple Myeloma, Uncategorized /by PEN Editorial Staff

Cancer, the abnormal growth of cells that multiply aggressively, has become one of the most prevalent diseases in today’s time. Diagnosis marks one of the most challenging periods in a person’s life. Although curable at early stages, the malignancy itself and the side-effects of treatment change the sufferer’s life at a significant scale.

Lymphocytes represent a major component of the body’s immune system. There are two types of lymphocytes, T lymphocytes and B lymphocytes, and both are crucial for fighting pathogens. When the B lymphocytes respond to a foreign body, they mature into plasma cells and memory cells. The plasma cell is responsible for making immunoglobulins, also known as antibodies, specific to that particular pathogen. These antibodies are the most important precursors in the defense mechanism of the body.

Multiple Myeloma is a type of cancer that seeds itself in these plasma cells that comprise the body’s major immune component. Plasma cells are the prime fighters against foreign organisms such as bacteria, virus, and fungi. Their tendency to engulf the opponent malfunctions and thus the immunity gets badly affected in Multiple Myeloma.

Causes and risk factors for Multiple Myeloma

Although the cause of multiple myeloma is not known, certain risk factors can contribute to it.

1. Toxic chemicals

Toxic, cancer-causing chemicals include benzene-infused products, products that contain sulfates and parabens, fire retardants, dioxins, polychlorinated biphenyls (PCBs) and polybrominated diphenyl ethers (PBDEs). These all are said to be the highest cancer-causing agents. Out of all the chemicals, the ones containing chlorine are the ones that rank first in the production of cancer. Research has demonstrated the relationship between Multiple Myeloma and occupational exposure to six chlorinated solvents: 1,1,1-trichloroethane (TCA), trichloroethylene (TCE), methylene chloride (DCM), perchloroethylene (PCE), carbon tetrachloride, and chloroform, respectively. The occupational solvents here refer to those used in industries and factories.

The study concluded that among all six chlorinated agents, TCA showed the most elevated levels in leading to Multiple Myeloma.

2. Exposure to radiation

Workers at hospitals or diagnostic institutes are at higher risk of Multiple Myeloma. The radiation emitted is so powerful that it can surpass the skin, tissues, and muscles and can penetrate the bones to enter the bone marrow. A cohort study done in Mayak concluded that radiation emission greater than 1 Gy has significantly produced a higher risk of Lymphoma, Leukemia and Multiple Myeloma.

3. Viruses and immune disorders

Certain viruses have a correlation with Multiple Myeloma however, their association is still unknown. The viruses include:

Simian Virus 40: This is one of the most intense polyomaviruses. It induces primary brain and bone cancers. It’s oncogenic (cancer-causing) property makes it the major culprit in causing multiple myeloma.
Several herpes viruses: A study was conducted to evaluate the role of human herpesvirus 8 in the pathogenesis of multiple myeloma. Patients with Multiple Myeloma were selected, and their samples of blood were drawn and sent to the lab for testing. The study concluded that the majority of the patients with Multiple Myeloma showed the evidence of human herpesvirus 8 in their blood samples.

Apart from the above viruses, first degree relatives of patients with Multiple Myeloma may develop MGUS (monoclonal gammopathy of undetermined significance). Hepatic viruses and HIV have also proven to be linked to Multiple Myeloma.

4. Hereditary

As with many other diseases, Multiple Myeloma tends to run in families who have already been affected by it. In some cases, Multiple Myeloma goes undiagnosed in a principle patient who transfers it to several offspring before discovering it.

5. Age

Patients aged 40 to 60 are at a higher risk to develop Multiple Myeloma.

6. Gender

Multiple Myeloma inflicts men more often than women. The cause is still unknown, but it could be due to hormonal differences. The male to female ratio is approximately 1.54 to 1.

7. Obesity

The role of obesity in contributing to Multiple Myeloma is unclear, but it might be due to insulin resistance and improper functioning of the hormones.

8. Race

African-Americans are twice as likely to have Multiple Myeloma than other races.

Signs and Symptoms of Multiple Myeloma

Based on Multiple Myeloma cases observed so far, following are the signs and symptoms of Multiple Myeloma:

Anemia,
Bleeding,
Nerve damage,
Skin lesions (rash),
Enlarged tongue (macroglossia),
Bone tenderness or pain (including back pain, weakness, fatigue, or tiredness),
Infections,
Pathologic bone fractures,
Back pain,
Spinal cord compression,
Kidney failure and/or other end-organ damage,
Loss of appetite and weight loss,
Constipation,
Hypercalcemia (high levels of calcium in the blood), and
Leg swelling.

Is Multiple Myeloma Hereditary?

Multiple Myeloma is not considered a hereditary disease. While in some cases Multiple Myeloma may occur due to genetic abnormality, there is no evidence that heredity plays any role in its development. Research has shown several factors may contribute towards the development of Multiple Myeloma. While researchers have indicated a very slight chance that disease could be transferred from parents to their offspring, it’s very uncommon for more than one member of a family to have multiple myeloma.

Stages of Multiple Myeloma

Progressive stages of Multiple Myeloma have been recognized as follows:

Smoldering: Multiple myeloma with no symptoms.
Stage I: Starts with anemia, relatively small amount of M protein, no bone damage.
Stage II: Severe anemia and M protein as well as bone damage.
Stage III: Huge concentration of M protein, anemia, kidney damage.

Treatment of Multiple Myeloma

Treatment of Multiple Myeloma varies from patient to patient as cases become more and more complex. But some commonly treatment practices are explained briefly below:

Radiation therapy: Treats a small mass of affected cells. Radiation therapy normally targets the damaged part of bone (where cancerous cells have affected bone causing severe damage). Radiation therapy includes use of high energy rays to kill and stop growth of damaged cells stopping cancer growth. ERBT (external beam radiation therapy) is the most common type of therapy done.
Surgery: Involves removing or repairing of a body part. It can also fix the bones that have been damaged due to Multiple Myeloma.
Chemotherapy: Involves the use of drugs to kill the cancer cells. It kills the fast growing cells and in some cases it also damages bone marrow.
Stem Cell Transplant: Stem cell transplant replaces damaged cells in bone marrow with healthy plasma cells.
Order of Treatments: Different patients have been given different type of treatments based on type of areas affected. But the order of treatment remains the same. The initial treatment given is known as Primary Treatment, which includes the curing the cancer after the diagnosis. This treatment is also known as an Induction Treatment. the Second step is of Maintenance Treatment, which is done to keep cancer cells suppressed.

Survival chances of Multiple Myeloma patients

Statistics can be confusing because each Multiple Myeloma case varies from patient to patient.
Survival rates are measured from the first point of treatment, such as chemotherapy. In the past, patients often could not survive even beyond the first stage of treatment because when cancer cells grow fast they cause too much damage. Since 2000 the percent of patients living five years after diagnosis has been increasing considerably, for up to 50 percent of patients.

Can Multiple Myeloma Be Cured?

For decades, multiple myeloma was considered incurable and only disease control was the goal of treatment. This was due to the fact that there were very few treatment options available.

With the introduction of high-dose therapy, stem-cell transplants, and immunomodulatory drugs, the survival rate for myeloma patients doubled when compared to the 1990s when only chemotherapy was used.

When deciding if multiple myeloma can be cured we have to define some terms:

Partial remission – some, but not all signs and symptoms of myeloma have disappeared
Remission – a decrease in or disappearance of signs and symptoms of myeloma
Complete remission – all signs and symptoms of myeloma have disappeared

In an article for Myeloma Crowd, Jennifer Ahlstrom says, “Does remission mean a cure? In myeloma it typically does not. Though we love the word remission, we hesitate because myeloma is known to come back after some time.”

As a myeloma patient, you may always worry about the chance of recurrence, but there is hope that you can live with long treatment-free periods with excellent quality of life.

Sources:

Multiple Myeloma Bone Marrow

Is Multiple Myeloma Hereditary? What you need to know

Normalcy and Myeloma Remission

Cancer Survivors: Managing Emotions After Cancer Treatment

April 6, 2020/in Adrenal Cancer, Adrenal Cancer Blog WN, Adrenal Cancer What's Next, AML Blog WN, Appendix Cancer, Appendix Cancer Blog WN, Appendix Cancer What's Next, BC Blog WN, Bone Cancer, Bone Cancer Blog WN, Bone Cancer What's Next, Brain Cancer, Brain Cancer Blog WN, Brain Cancer What's Next, CLL Blog WN, Eye Cancer, Eye Cancer Blog WN, Eye Cancer What's Next, FL Blog WN, Follicular Lymphoma, General Blog WN, GYNC Blog WN, Head & Neck Blog WN, LC Blog WN, MM Blog WN, MPN Blog WN, NHL Blog WN, PC Blog WN, PEN Blog, SC Blog WN, Thyroid Cancer Blog WN, Waldenstrom, Waldenstrom Blog WN /by Kara Rayburn

Since the 1980s, doctors have tried to describe the stages cancer survivors normally go through. Most divide them into a version of the three stages described below:

Acute Survival (Living With Cancer) – Covers cancer diagnosis and any subsequent treatment. During this time, patients will undergo treatment and may be invited to participate in a clinical trial to study new cancer treatments. Sometimes services are offered to patients and their caregivers to address emotional, psychological and financial problems.

Prolonged survival (transient cancer): Post-treatment period during which the risk of recurrence is relatively high. Many patients are relieved that treatment has ended, but are concerned that they will not visit the oncologist regularly. During this stage, patients often visit the oncologist two to four times a year, depending on their circumstances.

Permanent survival (living after cancer): survival after treatment and long-term. Although two out of three survivors declare that their lives have returned to normal, a third affirms that they continue to have physical, psychosocial or economic problems. During this stage, most survivors are cared for again by their GP. Ideally, they have developed a long-term follow-up plan with the oncologist for their regular doctor to implement.

Social and Emotional Repercussions of Cancer

In addition to the physical effects of cancer, survivors experience psychological, emotional, and spiritual consequences. Many of them affect quality of life and can manifest many years after treatment. Here are some of the most common problems cancer survivors face:

Fear of Recurrence

Many survivors live in fear that the cancer will return at some point. In some cases, a major event, such as the anniversary of the diagnosis or the end of treatment with the oncologist, can trigger these feelings. Fear can be good if it encourages you to discuss your health changes with your doctor, but it can also cause unnecessary worry. Knowing your own body will help you distinguish between normal changes and more serious symptoms.

Pain

Grief is the natural result of loss. In cancer, losses refer to health, sexual desire, fertility, and physical independence. To overcome your pain, it is important to experience all of these feelings. Support groups and psychological assistance can help you deal with these problems.

Depression

It is estimated that 70% of cancer survivors experience depression at some point. Depression can be difficult to diagnose in cancer survivors, since the symptoms are very similar to the side effects of cancer treatment, such as weight loss, tiredness, insomnia, and inability to concentrate. In a 10-year follow-up study, symptoms of depression have been found to be associated with shorter survival, so seeking treatment for depression is essential.

Body Image and Self-esteem

Cancer survivors who have suffered amputations, disfigurements, and loss of organs such as the colon or bladder often have to overcome their problems to relate to themselves and to others. A negative body image and low self-esteem can affect the survivor’s ability to maintain relationships with their partner, which will have important consequences on their quality of life. Good communication is essential to maintain or regain intimacy after cancer. Consult a doctor if problems persist.

Spirituality

Many survivors feel that life takes on new meaning after cancer and renew their commitment to certain spiritual practices or organized religion. Research indicates that spirituality improves quality of life through a strong social support network.

Survivor’s Fault

Some people feel guilty about surviving cancer when others don’t. You may be wondering “Why me?” Or reevaluate your goals and ambitions in life. If you have a prolonged feeling of guilt, a psychotherapist, a member of the clergy, or a support group can help you express your feelings.

Relations

Possibly the biggest challenge cancer survivors face is how others react to their disease. Friends, coworkers, and family members may feel uncomfortable when discussing the diagnosis of cancer. They can keep silent, avoid you, or pretend that nothing has happened. Others may use humor to try to distract you and not think about your situation, instead of offering to talk about your problems. Cancer can be a long-lasting disease, so it is essential to overcome communication barriers.

Social and Work Life

Social and professional reintegration can be accompanied by many fears: concern about being exposed to a higher risk of infection, lack of enough energy to reach the end of the workday and anxiety about not being able to think clearly due to the so-called “neurological impairment by chemotherapy “or memory loss. In overcoming a life and death situation, many cancer survivors feel alienated from people who have not had the same experience and turn to other survivors for support and friendship.

You may be reluctant to reveal to your bosses and colleagues that you are receiving cancer treatment for fear of being treated differently or even losing your job and health insurance. This creates an atmosphere of uncertainty that contributes to emotional stress. Again, honest communication with your colleagues will help you overcome these feelings.

About the author: Diane H. Wong is copywriter at write essay for me service. She is also a professional nutritionist and plans to start her own blog to share her knowledge with others.

PEN-Powered Activity Guide

March 20, 2020/in Adrenal Cancer, Adrenal Cancer Resource WPS, Adrenal Cancer Whole Patient Support, AML Resource WPS, Appendix Cancer, Appendix Cancer Resources WPS, Appendix Cancer Whole Patient Support, BC Resource WPS, Bone Cancer, Bone Cancer Resource WPS, Bone Cancer Whole Patient Support, Brain Cancer, Brain Cancer Resource WPS, Brain Cancer Whole Patient Support, CLL Resources WPS, Eye Cancer, Eye Cancer Resource WPS, Eye Cancer Whole Patient Support, FL Resource WPS, Follicular Lymphoma, General Resource WPS, GYNC Resource WPS, Head & Neck Resource WPS, LC Resources WPS, MM Resources WPS, MPN Resources WPS, NHL Resources WPS, PC Resources WPS, PEN Blog, SC Resources WPS, Thyroid Cancer Resource WPS, Uncategorized, Waldenstrom, Waldenstrom Resource WPS /by Kara Rayburn

Empowered! Podcast: Meet Andrea Conners

February 27, 2020/in Acute Myeloid Leukemia, AML Newly Diagnosed, AML Podcasts ND, BC Newly Diagnosed, BC Podcasts ND, Breast Cancer, Care Partner Resources, Care Partner Resources Podcasts, Chronic Lymphocytic Leukemia, CLL Newly Diagnosed, CLL Podcasts ND, FL Newly Diagnosed, Follicular Lymphoma, General Health Info, General Newly Diagnosed, General Podcast ND, GYNC Newly Diagnosed, GYNC Podcast ND, Gynecological Cancers, Head & Neck Cancer, Head & Neck Cancer Newly Diagnosed, Head & Neck Podcast ND, LC Newly Diagnosed, LC Podcasts ND, Lung Cancer, MM Newly Diagnosed, MM Podcasts ND, MPN Newly Diagnosed, MPN Podcasts ND, Multiple Myeloma, Myeloproliferative Neoplasms, NHL Newly Diagnosed, NHL Podcasts ND, Non-Hodgkin's Lymphoma, PC Newly Diagnosed, PC Resources ND, PEN Blog, SC Newly Diagnosed, SC Podcasts ND, Skin Cancer, Waldenstrom, Waldenstrom Newly Diagnosed /by Kara Rayburn

Today, we’re extremely proud to introduce our first-ever Empowered! podcast. Empowered! will bring you conversations around topics that are important to patients and care partners.

For our first episode, we meet Andrea Conners. Andrea is Patient Empowerment Network’s Executive Director. Andrea shares a little bit about herself, about PEN, and her inspiration in getting involved.

…

How Can You Best Support A Friend With Cancer?

February 26, 2020/in Adrenal Cancer, Adrenal Cancer Blog WPS, Adrenal Cancer Whole Patient Support, AML Blog WPS, Appendix Cancer, Appendix Cancer Blog WPS, Appendix Cancer Whole Patient Support, BC Blog WPS, Bone Cancer, Bone Cancer Blog WPS, Bone Cancer Whole Patient Support, Brain Cancer, Brain Cancer Blog WPS, Brain Cancer Whole Patient Support, CLL Blog WPS, Eye Cancer, Eye Cancer Blog WPS, Eye Cancer Whole Patient Support, FL Blog WPS, Follicular Lymphoma, General Blog WPS, GYNC Blog WPS, Head & Neck Blog WPS, LC Blog WPS, Marie Ennis-O'Connor, MM Blog WPS, MPN Blog WPS, NHL Blog WPS, PC Blog WPS, PEN Blog, SC Blog WPS, Waldenstrom, Waldenstrom Blog WPS /by Marie Ennis-O'Connor

What happens when someone close to you has been diagnosed with cancer?

How do you find the right words to say?

What is the best way to support them?

And how do you cope with your own emotions and feelings at the same time?

In this month’s article, I am sharing advice that comes directly from those who have personal experience of cancer – either as a patient themselves or as a friend or family member to someone with cancer. The following tips are some of the things that friends said and did that were most helpful to cancer patients at the time of diagnosis and treatment.

Firstly, acknowledge that this can be a hard time for you too

Hearing that a friend has been diagnosed with cancer may impact you in ways that you might not be prepared for. You may have many different emotions to cope with. You may feel angry, sad, and scared that this is happening to your friend. You may even find the news hard to take in and feel numb. Breast cancer survivor, Nicole McClean^[1] describes her feelings of numbness on hearing the news that her best friend was diagnosed with the same disease: “I didn’t know what to feel. I didn’t know what to say. Everything I had said to other people didn’t really apply because this was MY friend. Not a stranger that I was comforting. Not even myself that I had to give a pep talk to.”

But don’t make it about you

In the shock of hearing about a friend’s diagnosis, it can be tempting to slip into a place of dwelling on your own fears and anxieties. Nicole cautions others not to make this about themselves. “Please don’t be a friend like me. Don’t be the friend who makes the person with the diagnosis have to stop her own grieving to console you,” she says. “This is her moment. Her time to BE consoled. I don’t ever want her to feel like she needs to console me or comfort me during this time. That’s no longer her role. It is now mine.”

Just ask what’s needed

“My number one tip,” says radiation oncologist, Dr Matthew Katz (@subatomicdoc), is “just ask what you can do to help. It can be hard to predict and may vary at different times in the cancer experience.” Breast surgeon, Dr Deanna Attai (@DrAttai) agrees: “Ask the patient what do you need, ask if they just want some company to sit, listen and be present.”

Above all, advises author and advocate, Nancy Stordahl (@NancysPoint) “don’t try to be a fixer and please, avoid using platitudes. Don’t tell her she’s strong, brave or courageous. Don’t add to her burden by making her feel she must live up to some gold standard of “doing cancer right”. Let her be real. Witness her pain. Listen. Just be there.”

Listen, hear and do

“The steps to being a good friend and supporter are simple”, says Nicole, “Listen and do.” The first part is listening. “Listen to her. Or just sit with her silently. But either way, give her space where she’s comfortable sharing with you what’s in her heart without that moment becoming about you.“

John Moore (@john_chilmark), founder of Chilmark Research, echoes this when he says: “Listen, truly listen and they will open up in time to the fear they hold within – just how scary it can be at times.”

Julia, co-founder of online breast cancer support community @BCCWW agrees. “Listen and hear,” she advises, “if they have bad days let them, cancer isn’t fun times. Flip side: if they feel good, believe them.”

And it’s ok to not know what to say sometimes.

“Something that I think is helpful is for friends and family to remember that it’s okay if you don’t know what to say to the person with cancer,” explains Lisa Valentine (@HabitgratLisa), ·who blogs at habitualgratitude.com. “Show up, say “I don’t know what to say, but I am here for you.” Take it from there. Showing up and listening usually takes care of what can happen next.”

HER2 breast cancer patient, Tracy (@tracyintenbury) suggests offering to go to “chemo sessions if the person with cancer would otherwise be attending alone.” Metastatic breast cancer patient, Ilene Kaminsky (@ilenealizah) appreciated those who attended medical appointments with her “especially during the first months when everything seemed to proceed at the pace of tar, and again during critical appointments/ chemo days.”

Do what needs to be done

“Don’t ask her what she needs, just do something that she needs,” recommends Nicole. “Show up, and help out.” Chair of Cardiomyopathy, CR UK patient board and NCRI rep for kidney and bladder cancer, Alison Fielding (@alisonfielding) agrees: “Make specific offers of help such as lifts, company or chores rather than waiting to be asked.”

“Anyone who said let me know if you need anything wasn’t going to get an answer,” explains Ilene “so during difficult times, one or two of my friends would do my wash, change the sheets and put the clothes away. She’d bring me smoothies while I’d be knocked out from my pre-taxol Benadryl and knew exactly what I’d like.”

Clinical Professor of Pathology, Dr David Grenache (@ClinChemDoc), cautions following through with offers of help. “From experience: when you tell them you will do what you can to help, then follow through with that when you are asked for help. You may have to drop a high priority task but when the call for help comes. Go!”

Victoria (@terrortoria), founder and community manager of @YBCN_UK (which supports young women with breast cancer), recalls a friend who “made home made soup for me when I told her I couldn’t bring myself to eat things. She left them on my doorstep as I couldn’t bring myself to see people either for a time. It was a 90-minute round trip for her. She’d listened to how I felt and then helped me within my limits.”

This theme of cooked meals comes up again and again.

“Cook meals so the person with cancer has something warm and nutritious,” recommends Tracy. Maureen Kenny (@MaureenKenny1), a patient living with secondary breast cancer, agrees, saying “you can never go wrong with a cooked meal.”

After a long day in hospital, breast cancer patient advocate, Siobhan Feeney (@BreastDense) recalls the day she came home to find “in the porch, cooked dinner, homemade bread, marmalade and fresh eggs.” A gift she says she’ll never forget.

Alleviating the pressure of cooking and housework is a super practical way to help a friend with cancer. Sarah Connor (@sacosw), shares a story about her neighbor who “came once a week, took away a basket of dirty clothes, brought them back washed, dried, ready to put away. She didn’t know me very well. Still makes me tingle.”

Give thoughtful gifts

From warm socks and soft blankets to body lotion and lip balm, there are many gifts you can bring a friend who is going through treatment. Beverly A. Zavaleta MD^[2], author of Braving Chemo, writes: “Each time someone sent me a gift I felt a connectedness to the giver and to the “outside world,” which was a welcome escape from the cancer world that I was living in… when I received a gift, I appreciated the time that that person took to remember me, to think of what I might need and to choose, assemble or make the gift.”

Breast cancer survivor, Karen Murray (@murraykaren) recommends practical gifts like “hand cream (skin very dry after chemo), gel for mouth ulcers (also common), some nice sweets/fruit.”

Male breast cancer survivor, Dennis Keim (@denniskeim) suggests “a jar of Aquaphor might be a nice gift. Especially if their skin is getting hammered by chemo.”

“Help the cancer patient pamper themselves,” proposes Lisa Valentine. “You know your friend or family member well enough–get them something they wouldn’t get themselves because they would think it’s extravagant–i.e. the expensive chocolate or a pedicure.” What may seem like an indulgence can also be extremely practical. “Taking me for gel nails protected my ever softening nails,” explains Ilene Kaminsky.

Although be mindful that not everyone appreciates the same things.

“I wasn’t interested in toiletries, candles. Wine gums – they mask the taste of a nasty pre-chemo antiemetic,” says Syliva (@SylviaB_). “People often think buying flowers is naff. I adored it when people bought me flowers. A couple of people bought spectacular flowering plants.” Breast cancer blogger, Sheri^[3] received the fabulous gift of a monthly subscription to in-home flower deliveries during treatment.

Help with treatment decisions

If you have already been through cancer yourself, your friend may turn to you for treatment advice. You can guide them to helpful resources and share your own experience, but ultimately the final decision is theirs alone. Sometimes you may not agree about treatment decisions. This can be hard for both of you. Try to accept this and support their decision. “I think not being critical with someone’s choices is very important. Support should not be in spite of circumstances,” says Ilene Kaminsky.

Offer compassion and kindness

Two-times breast cancer survivor and patient advocate Terri Coutee^[4] believes the best gifts you can offer a friend is compassion and kindness. “Hold a hand if you are with a friend or loved one in person,” she advises. “You don’t even have to say anything. Perhaps your warm, human touch is enough. Tell them you have no idea how they are feeling at the moment but want to support them in any way you can. Be sensitive to the fact they may only need someone to listen, not advise.”

John Hanley (@ChemoCookery) considers “small practical actions and warm, soothing, short reassuring words are perfect.” Words like “I’m going nowhere and I’ll be here shoulder to shoulder when you need me. A little note/text/card “Here for you 24/7 anytime.”A HUG, an Embrace, a hand, eye contact.”

Sara Liyanage, author of Ticking Off Breast Cancer ^[5] reminds us that “a cancer diagnosis turns your world upside down and overnight you can become scared, emotional, vulnerable and anxious. Having friends and family step up and show kindness is a lifeline which can carry you through from diagnosis to the end of treatment (and importantly, beyond).”

Treat your friend like you normally would

Researcher, Caroline Lloyd (@TheGriefGeek), cautions us not to “make it all about the cancer, they are still a person.” Writer and metastatic breast cancer patient, Julia Barnickle (@JuliaBarnickle) agrees. “I prefer to keep conversation as normal as possible for my own sake – I don’t want cancer to take over my life.”

Stage 4 melanoma patient advocate, Kay Curtin (@kaycurtin1) suggests you talk to your friend “like you would any friend. We haven’t suddenly become aliens who require a different style of language,” she points out. Sherry Reynolds (@Cascadia), whose Mom is a 15-year metastatic breast cancer patient, talks about how her mother “really appreciated it when people talked to her about regular things vs always talking about her cancer or asking how she was doing. She was living with her cancer, it wasn’t who she is.”

Know when to back off

“What I didn’t want, which is equally important, was people trying to encourage me to go anywhere or do anything,” says Syliva (@SylviaB_).“ I spent a lot of time on my sofa and felt guilty saying no to people who wanted me to go out.”

Knowing when to be there for your friend, and when to give them space isn’t always easy. but it’s an important balancing act as a good friend. In Tips for Being A Great Cancer Friend, Steve Rubin,^[6] points out that “sometimes, the overstimulation from nurses popping in, PT sessions, and all the tests/drug schedules can become so exhausting that you just want to be left alone. Other times, the loneliness kicks in and you could really use a friendly face.”

It may take time to find the right balance, so let your friend guide you. Nicole McClean shares her experience with her friend: “I haven’t spoken to her a lot. I didn’t want to become that sort of pesky, well-intentioned friend who searched for every little thing that might show how she was feeling at any particular moment. Because I know that her feelings would change from moment to moment and sometimes… sometimes it’s just too much to have someone repeatedly ask you… “how are you really feeling?” even when you know they mean well. At this point, I am letting her guide me into how much she needs me and where she wants me to be.”

At the same time, Terri Coutee advises gentle persistence: “Don’t give up if you offer help and they don’t respond. Revisit your offer to do something for them with gentle persistence. One day they may decide they need your help,” she says. Maureen Kenny recalls “a friend who texted me every time she was about to go shopping to see if I needed/wanted anything while she was out. I rarely did but I always really appreciated her asking.”

Make your support ongoing

Support is not just one and done. In the shock and drama of a crisis, friends rally round, but once the shock has worn off many disappear. True friends stick around long after the initial days, weeks and months of a cancer diagnosis. Ilene asks that friends continue to“remember birthdays, cancerversaries, and remember me on holidays. A card means a lot even to just say hi.”

Final thoughts

Many studies have found that cancer survivors with strong emotional support tend to better adjust to the changes cancer brings to their lives, have a more positive outlook, and often report a better quality of life. Research has shown that people with cancer need support from friends. You can make a big difference in the life of someone with cancer. ^[7]

“I personally loved just knowing I was cared for, says lobular breast cancer campaigner, Claire Turner (@ClaireTTweets). “A number of friends didn’t contact me or come and see me and that hurt, so simply be there in whatever way means something,” she advises.

“The truth is basic,” says Nicole McClean, “nobody wants somebody they love to go through cancer. Especially if they’ve been through it themselves. You want people you love to be spared this type of hardship. But you can’t protect them from it. You can only help them through it. Be there for them in the ways that they need.”

Tailoring your help to what your friend needs and enjoys most is the best way to be a friend to them. As four-times cancer survivor Sarah Dow (@he4dgirl) points out “the answers will surely be as varied as we are, both in life generally, our experience of cancer, and our connection with our friend.”

^[1] Nicole McClean. My Fabulous Boobies.

^[2] Beverly A. Zavaleta MD, The Best Gifts For Chemotherapy Patients

^[3] Life After Why

^[4] Terri Coutee, DiepCJourney

^[5] Sara Liyanage, “What To Do (And What Not To Do) For Someone With Breast Cancer”

^[6] Steve Rubin, The (Other) C Word

^[7] American Cancer Society, “How to Be a Friend to Someone With Cancer”

Marie Ennis-O'Connor

A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.

hcsmmonitor.com/

Confused About Immunotherapy and Its Side Effects? You Aren’t Alone

February 11, 2020/in Acute Myeloid Leukemia, Adrenal Cancer, Adrenal Cancer Blog TC, Adrenal Cancer Treatment & Clinical Trials, AML Blog TC, AML Treatments and Clinical Trials, Appendix Cancer, Appendix Cancer Blog TC, Appendix Cancer Treatment & Clinical Trials, BC Blog TC, BC Treatment & Clinical Trials, Bone Cancer, Bone Cancer Blog TC, Bone Cancer Treatment & Clinical Trials, Brain Cancer, Brain Cancer Blog TC, Brain Cancer Treatment & Clinical Trials, Breast Cancer, Care Partner Resources, Care Partner Resources Blog, Chronic Lymphocytic Leukemia, CLL Blog TC, CLL Treatments and Clinical Trials, Eye Cancer, Eye Cancer Blog TC, Eye Cancer Treatment & Clinical Trials, FL Blog TC, Follicular Lymphoma, General Blog TC, General Treatment and Clinical Trials, GNYC Treatment and Clinical Trials, GYNC Blog TC, Gynecological Cancers, Head & Neck Blog TC, Head & Neck Cancer, Head & Neck Cancer Treatment & Clinical Trials, LC Blog TC, LC Treatments and Clinical Trials, MM Blog TC, MM Treatments and Clinical Trials, MPN Blog TC, MPN Treatments and Clinical Trials, NHL Blog TC, NHL Treatments and Clinical Trials, PC Blog TC, PC Treatments and Clinical Trials, PEN Blog, Prostate Cancer, SC Blog TC, SC Treatment and Clinical Trials, Waldenstrom, Waldenstrom Blog TC /by Marcia Mowbray Evans

“You don’t look like you have cancer.”

More than one patient undergoing immunotherapy to treat cancer has reported hearing statements like that. Immunotherapy is one of the recent advances in cancer treatment that belie the stereotypes about the effects of cancer treatment.

The side effects of immunotherapy are different from those associated with chemotherapy and radiation. However, that does not mean immunotherapy does not have side effects. Patients and care partners need to be aware of these potential side effects and to be vigilant in addressing them with their oncologists because they can signal more serious complications if left untreated.

What is Immunotherapy?

Despite the increase of immunotherapy treatment options in recent years and considerable media attention paid to advancements in this field, there remains confusion about immunotherapy and its side effects. Many cancer patients are unaware of whether immunotherapy treatments are available for their specific diagnosis. Others don’t know that genetic profiling of their tumors is usually required to determine if immunotherapy is an option and not all treatment centers routinely conduct genetic profiles of tumors. A survey by The Cancer Support Community found that the majority of patients who received immunotherapy knew little to nothing about it prior to treatment and were unfamiliar with what to expect.

Immunotherapy works by manipulating the patient’s immune system to attack cancer cells. It is perceived as gentler and more natural than chemotherapy and radiation, without the same destructive effect on the body’s healthy tissues. This, combined with a lack of prior understanding of immunotherapy, can lead patients and care partners ill-prepared for possible side effects.

Furthermore, immunotherapy is a category of therapies, not a single type of treatment. There are a variety of immunotherapy drugs, most of which are administered via infusion. Side effects will vary by drug, the cancer and its location, treatment dose, and the patient’s overall health.

The following are the most common types of immunotherapy.

Checkpoint inhibitors use drugs to block proteins in the patient’s immune system that would otherwise restrain the immune system, often referred to as taking the “brakes” off the immune system.
CAR-T therapy modifies the patient’s T-cells in a lab to enhance their ability to bind to cancer cells and attack and kill them.
Oncolytic virus therapy uses genetically modified viruses to kill cancer cells.
Another therapy uses cytokines (small proteins that carry messages between cells) to stimulate the immune cells to attack cancer.

Immunotherapy can be part of combination therapy. It might be combined with chemotherapy. It might be used to shrink a tumor that is then surgically removed. Or multiple immunotherapy drugs might be used simultaneously.

What Are The Side Effects?

With immunotherapies, side effects typically occur when the immune system gets too revved up from the treatment. The most common side effects for immunotherapy treatments are fatigue, headache, and fever with flu-like symptoms. Some people also experience general inflammation often in the form of a rash. Many melanoma patients report blotchy skin discoloration, called vitiligo, during treatment. These milder side effects can usually be managed with over-the-counter remedies and adjustments to daily activities.

For checkpoint inhibitors, the fastest growing segment of immunotherapy treatments, mild side effects occur in 30% – 50% of patients. Serious side effects typically occur in less than 5% of patients. (See “Understanding Immunotherapy Side Effects” from the National Comprehensive Cancer Network and the American Society of Clinical Oncology.)

Less common side effects are blisters, joint pain, thyroid inflammation, and colitis (inflamed colon resulting in diarrhea with cramping). Some patients who receive CAR T-cell therapy develop a condition known as cytokine release syndrome, which causes fever, elevated heart rate, low blood pressure, and rash.

In rare cases, immunotherapy has resulted in lung inflammation, hepatitis, inflammation of the pituitary, and detrimental effects on the nervous and endocrine systems. In most cases, the conditions clear up when treatment ends. However, there have been outcomes in which immunotherapy caused diabetes or tuberculosis.

“Overall there are fewer side effects [with immunotherapy],” explained Dr. Justin Gainor, a lung and esophageal cancer specialist at Mass General during an Immunotherapy Patient Summit hosted by the Cancer Research Institute. “But the immune system can affect anything from the top of the head down to the toes. Any organ has the potential to be affected.”

As the application of immunotherapy has expanded, so has our understanding of the potential side effects. Like most medical treatments, how one person responds to immunotherapy can be different from another even when the cancer diagnosis and drug therapy are the same.

The essential thing patients and care partners need to know about side effects is they should always be reported to their oncologist or nurse oncologist.

Why Patients Should Talk to Their Provider About Immunotherapy Side Effects

Because immunotherapy has created newer therapy options, there isn’t the volume of experiences as with older treatments. The infinite number of variables that patients provide once a treatment moves beyond clinical trials and into the general patient population generate more diverse outcomes. And, as most therapies are less than 10 years old, there hasn’t been an opportunity to study the long-term effect of these therapies. This is why oncologists advise patients and their caregivers to be extra vigilant in noting any changes experienced during and after treatment.

Many side effects are easy to treat but medical providers want patients to be forthcoming in discussing any and all side effects. This is in part to improve understanding of side effects, but also because a mild cough or a case of diarrhea might be harbingers of a more systemic issue that will grow worse if left untreated.

Patients should not be hesitant to discuss side effects because they fear they will be taken off immunotherapy. Sometimes a pause in treatment might be necessary, but the earlier the oncologist is made aware of a side effect, the less likely that will be necessary.

In addition, patients undergoing immunotherapy should always take the name(s) of their immunotherapy drugs and the name of their oncologist when seeing medical professionals outside of their cancer treatment team. This is especially important when visiting the ER. Because immunotherapy drugs are newer and highly targeted to certain cancers, many medical professionals remain unfamiliar with drug interactions and treating related side effects.

Immunotherapy On The Rise

Immunotherapy treatments have resulted in reports of remission in cases that would’ve been deemed hopeless just five or 10 years ago. The Federal Drug Administration (FDA) has approved various immunotherapy treatments for melanoma, lung cancer, head and neck cancer, bladder cancer, cervical cancer, liver cancer, stomach cancer, lymphoma, breast cancer, and most recently bladder cancer. (Here is a list of immunotherapies by cancer type from the Cancer Research Institute.)

“It’s revolutionized how we treat our patients,” says Dr. Gainor of Mass General about immunotherapy’s impact on lung and esophageal cancer.

Advances in immunotherapy research and trials continue to generate optimism and excitement. A clinical study in Houston is looking at using immunotherapy to prevent a recurrence. Researchers in Britain recently announced a discovery that might lead to advances in immunotherapy treatments to a much broader array of cancers.

While there is excitement around the field of immunotherapy and it has resulted in unprecedented success in treating some previously hard-to-treat cancers, it remains an option for a minority of cancer diagnoses. It works best on solid tumors with more mutations, often referred to as having a high-mutational load or microsatellite instability (MSI) high. And it is not universally successful for every patient.

With hundreds of clinical trials involving immunotherapy alone or in combination with other therapies, it is certain more treatment options are on the horizon. As more therapies are developed and more patients with a greater variety of conditions undergo immunotherapy, we will also increase our understanding of potential side effects.

Side effects should not dissuade patients and care partners from considering immunotherapy if it is available or from advocating for genetic tests to deteimine if it is an option. Many patients undergoing immunotherapy have previously undergone chemotherapy and report that the side effects are fewer and milder by comparison. The important thing is that patients and their partners know what to expect and communicate with their treatment team.

If the next 10 years in immunotherapy research and development are anything link eth elast 10, we can expect more exciting advancements in the battle against cancer. For more perspective on what’s ahead for immunotherapy see the Cancer Research Institute’s article: Cancer Immunotherapy in 2020 and Beyond.

Marcia Mowbray Evans

Marcia Evans is a writer and communication manager with 20 years of experience in public affairs and advocacy. Her focus is on helping organizations create communication strategies that make meaningful connections with their followers. She writes in honor of her uncle, who lost his battle with small cell carcinoma in 2018.

Is Treatment Adherence & Socioeconomic Disparities in Myeloma Creating Roadblocks to Best Care?

January 14, 2020/in Health Equity, MM Access and Affordability, MM Treatments and Clinical Trials, MM Videos AA, MM Videos TC, Multiple Myeloma, PEN Blog /by Kara Rayburn

A Diverse Health Hub #NewsyNugget

How Can Myeloma Patients Facing Disparities Be More Proactive in Their Care?

Dr. Victoria Vardell of Huntsman Cancer Institute discusses her study where key findings reveal underrepresented myeloma patient populations are less likely to receive a stem cell transplant (SCT). Vardell encourages patients to ask questions of their providers until they have a complete understanding so they can make the most informed decisions in their myeloma care. Watch the complete interview below.

Myeloma Treatment: Black patients less likely to receive SCT

ASH 2019 Study: Here

Speak Up: Patients should ask questions until they understand in order to make more informed treatment decisions

Does Treatment Adherence in Myeloma Impact Outcomes?

Myeloma expert Dr. Sikander Ailawadhi of Mayo Clinic breaks down the importance of treatment adherence and disease management in multiple myeloma in order to get the maximum benefit. In Dr. Ailawadhi’s own words: “In myeloma it has been shown again and again, if you use the right treatment for the right duration and you get a deep response, you are more likely to do better.” Watch the complete interview below.

Myeloma Treatment: staying on regimen long enough for deepest response is important

Treatment Adherence: a known issue in multiple myeloma and many cancers

Treatment Duration: staying on the right treatment for full duration coupled with deep response is key

Diverse Health Hub and the Patient Empowerment Network will partner to produce ongoing educational programs in 2020.

Fact or Fiction? Myeloma Treatment & Side Effects Resource Guide

January 6, 2020/in MM Downloads FAQ, MM Fact or Fiction, MM Programs, MM Resources TC, MM Treatments and Clinical Trials, Multiple Myeloma /by Kara Rayburn

Download This Guide

Fact or Fiction? Myeloma Treatment & Side Effects Guide

Download This Guide

Is Myeloma Hereditary? The Facts.

January 3, 2020/in MM Fact or Fiction, MM Newly Diagnosed, MM Programs, MM Treatment FAQ, MM Treatments and Clinical Trials, MM Videos ND, MM Videos TC, Multiple Myeloma /by Kara Rayburn

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

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

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

See More From Fact of Fiction? Myeloma

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Why Should Myeloma Patients Visit the Dentist Frequently?

The Truth About MGUS

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

Transcript:

Patricia:

How about this one? “Myeloma is hereditary.”

Dr. Ghobrial:

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

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

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

The Truth About MGUS

January 3, 2020/in MM Fact or Fiction, MM Newly Diagnosed, MM Programs, MM Treatment FAQ, MM Treatments and Clinical Trials, MM Videos ND, MM Videos TC, Multiple Myeloma /by Kara Rayburn

The Truth About MGUS from Patient Empowerment Network on Vimeo.

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

See More From Fact of Fiction? Myeloma

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Why Should Myeloma Patients Visit the Dentist Frequently?

Myeloma Treatment Options: What’s Available?

The Truth About Myeloma Treatment Side Effects

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

Transcript:

Patricia:

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

Dr. Ghobrial:

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

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

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

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

Patricia:

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

Dr. Ghobrial:

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

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

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

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

Patricia:

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

Dr. Ghobrial:

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

Why Should Myeloma Patients Visit the Dentist Frequently?

January 3, 2020/in MM Fact or Fiction, MM Newly Diagnosed, MM Programs, MM Treatment FAQ, MM Treatments and Clinical Trials, MM Videos ND, MM Videos TC, Multiple Myeloma /by Kara Rayburn

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

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

See More From Fact of Fiction? Myeloma

Related Resources

Why Should Myeloma Patients Visit the Dentist Frequently?

Myeloma Treatment Options: What’s Available?

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

Transcript:

Patricia:

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

Dr. Ghobrial:

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

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

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

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

The Truth About Myeloma Treatment Side Effects

December 20, 2019/in MM Fact or Fiction, MM Newly Diagnosed, MM Programs, MM Treatment FAQ, MM Treatments and Clinical Trials, MM Videos ND, MM Videos TC, Multiple Myeloma /by Kara Rayburn

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

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

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Transcript:

Patricia:

What are the common myeloma misconceptions about treatment side effects?

Dr. Ghobrial:

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

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

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

Patricia:

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

Dr. Ghobrial:

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

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

Patricia:

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

Dr. Ghobrial:

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

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

Patricia:

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

Dr. Ghobrial:

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

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

Patricia:

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

Dr. Ghobrial:

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

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

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

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

Patricia:

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

Dr. Ghobrial:

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

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

Patricia:

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

Dr. Ghobrial:

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

Multiple Myeloma Archives

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Causes and risk factors for Multiple Myeloma

1. Toxic chemicals

2. Exposure to radiation

3. Viruses and immune disorders

4. Hereditary

5. Age

6. Gender

7. Obesity

8. Race

Signs and Symptoms of Multiple Myeloma

Is Multiple Myeloma Hereditary?

Stages of Multiple Myeloma

Treatment of Multiple Myeloma

Survival chances of Multiple Myeloma patients

Can Multiple Myeloma Be Cured?

Social and Emotional Repercussions of Cancer

Fear of Recurrence

Pain

Depression

Body Image and Self-esteem

Spirituality

Survivor’s Fault

Relations

Social and Work Life

Firstly, acknowledge that this can be a hard time for you too

But don’t make it about you

Just ask what’s needed

Listen, hear and do

Do what needs to be done

Give thoughtful gifts

Help with treatment decisions

Offer compassion and kindness

Treat your friend like you normally would

Know when to back off

Make your support ongoing

Final thoughts

What is Immunotherapy?

What Are The Side Effects?

Why Patients Should Talk to Their Provider About Immunotherapy Side Effects

Immunotherapy On The Rise

How Can Myeloma Patients Facing Disparities Be More Proactive in Their Care?

Does Treatment Adherence in Myeloma Impact Outcomes?

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