IMF Patient and Family Seminar Takeaways

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August 2023

Los Angeles, California

Other than bouncing and swaying through Tropical Storm Hillary upon takeoff, the IMF’s Patient and Family Seminar was not only smooth, but wildly successful at imparting knowledge, fostering hope, and providing a jolly, good time. 

The International Myeloma Foundation (IMF) typically hosts two Patient and Family Seminars per year (these are in addition to Regional Community Workshops…a bit shorter in duration, but still incredibly valuable for patients and families/care partners).  I am grateful to all of the organizations that support education for the myeloma community for all myeloma patients and our families/friends/care partners. 

This 2-day seminar hosted an outstanding panel of specialists, including: 

  • Dr. Brian Durie, founder of the IMF;  
  • Dr. Robert Vescio (Cedars Sinai); 
  • Donna Catamero, ANP-BC (Mount Sinai);  
  • Yelak Biru, President and CEO of IMF; 
  • Dr. Rafat Abonour (University of Indiana School of Medicine); 
  •  Dr. Daryl Tan (Mount Elizabeth Novena Hospital); Dr. Noopur Raje (Massachusetts General Hospital); 
  • Dr. Ajai Chari (University of California, San Francisco)

There is much more than listed here, but I chose 10 specific highlights from this seminar (and will try to provide some context for each) to reduce this article’s length. 

I’ve whittled down the topic of treatment to three points that I found most interesting and hopefully useful to myeloma patients.   

Number 1:  Treatment (Extramedullary Disease-EMD)

For patients experiencing Extramedullary Disease (EMD), often considered to be a more aggressive characteristic of myeloma, and have been through multiple lines of therapy, there was discussion regarding the efficacy and use of bi-specific antibodies for treatment.  More specifically (no pun intended), the idea was floated that perhaps using TWO bi-specifics (or bi-specific with TWO targets) might provide benefit to patients with EMD.  As a reminder, bi-specifics are designed to bind an immune target (like a T-cell) with a target on a plasma cell (such as CD-38, BCMA, FcRH5, GPRC5D, etc.) to promote cell-mediated toxicity (destruction of the myeloma cell).  One of the panelists explained that the efficacy of this scenario is being examined in the RedirectTT-1 trial (which uses teclistamab [BCMA target] and talquetamab [GPRC5D target]) and showing encouraging results.  This is hopeful news for anyone experiencing EMD! 

My takeaway: If you are experiencing EMD, please work closely with your provider to monitor and treat.  If you have not seen a myeloma specialist, this would be a great time to find one (the IMF hotline is an excellent resource to assist with this 1-800-452-CURE [2873]). 

Number 2:  Treatment (Blenrep)

Regarding Belantamab Mafodotin, also known as Blenrep or belamaf, the first of its kind Antibody Drug Conjugate (ADC)…it was interesting to learn that Blenrep was not pulled from the U.S. market due to safety concerns (beyond what had been reported through trials).  Though there are toxicities associated with this therapy, of particular note, keratopathy (damage to the cornea), this is not the reason Blenrep was withdrawn from the U.S. market.  The trials did not meet statistical endpoints as defined by trial design and did not show as much benefit as expected.  For this reason (not safety), the FDA requested withdrawal from the U.S. market. 

My takeaway: I have never used Blenrep but can understand why patients would like to give it a try when other therapies have failed.  It may show some benefit with some patients.  It’s worth watching the future of Blenrep, if the manufacturer chooses to move forward for (re-)approval. 

Number 3:  Treatment (Immunotherapies)

In the last year, we’ve seen two CAR-T therapies for myeloma approved by the FDA:  Cilta-cel (Carvykti) and ide-cel (Abecma).  In August alone, the FDA approved two additional therapies for use in myeloma patients: elranatamab (Elrexfio) and talquetamab (Talvey).  The presentations on current and upcoming therapies were impressive.  From CAR-T to Antibody Drug Conjugates to CELMods and more, there is a robust pipeline of therapies for myeloma patients. 

My takeaway: Be hopeful!  The number of trials for new therapies, combinations of therapies, and therapies being employed earlier in treatment is encouraging!  (Also, my takeaway – learn how to pronounce Modakafusp before it is approved.)  

Number 4: Side Effects

A highly animated discussion regarding side effects from diarrhea to Cytokine Release Syndrome.  One of the most discussed side effects was neuropathy.  Many specialists discontinue therapy known to cause neuropathy and either switch to another therapy, or if maintenance or stable disease, keep patient off of therapy for a period of time. Interestingly, there was significant patient interaction. Many patients found gabapentin ineffective and requested other options.  One patient has utilized Scrambler therapy (he qualified by saying it has helped the pain from neuropathy but not the tingling); one patient places a bar of soap (Ivory, now that she is unable to find the pleasant-smelling Irish Spring) in her sheets; and some patients drink tonic water (with or without gin) to combat neuropathy. 

My takeaway: Talk with your provider about mitigation options for side effects.  All myeloma drugs have side effects for some people.   

Number 5: Coffee Breaks

This really was a highlight.  During our lovely coffee breaks, we enjoyed hot coffee, snacks, and excellent conversation with other patients and providers. 

My takeaway: Enjoying Evian water (and Evian sparkling water) from GLASS bottles was the Number 1 highlight of my weekend and felt luxurious.  Water always tastes better in glass vessels. 

Number 6: Technology

Data-driven technologies have the potential to save lives, improve treatment through customized treatment, and more accurately screen for diseases such as myeloma.  As the use of Artificial Intelligence, especially ChatGPT, increases, it is important to ensure that good sources are the foundation of the data you receive or request. 

My takeaway: For any search regarding myeloma, be sure to use a reputable source.  If using ChatGPT, include something along the lines of “Use only reputable sources for myeloma” in your prompts. 

Number 7: Testing (Imaging)

The most common question regarding imaging for myeloma: What is the best imaging modality for continuous monitoring of myeloma? 

My takeaway:  X-rays are out; low-dose CT is in.  Several specialists now use low-dose CT scans to screen for and monitor myeloma; however, if you are not able to have a low-dose CT, a PET-CT or MRI (whole-body) are superior to X-ray and quite adequate in monitoring myeloma.  Routine imaging is especially important for non-secretory disease and extra-medullary (disease that occurs outside of bone marrow and in soft tissue or organs).   

Number 8:  Testing (Blood)

Though we have many biomarkers to look for in the blood of patients with myeloma, it is still not up to par with bone marrow testing.  Most specialists agree that testing biomarkers in the blood (unless non-secretory) is an excellent way to monitor controlled disease.  Some specialists request a bone marrow biopsy annually, while others on this panel follow blood work and request biopsy when indicated by changing values.  Exciting news on the mass spectrometry front!  Known as “mass-spec testing,” this is a very sensitive test (more sensitive than the SPEP) to measure myeloma proteins in the blood will likely be an option for myeloma patients, once guidelines are established for its use and equipment and training is “rolled out” to other facilities. It is currently in use at Mayo Clinics; this panel is hopeful to see FDA approval and potential wide-spread access in the next year (maybe by mid-2024?). 

My takeaway: Ask your oncologist if mass-spec testing is available for you, if you are interested in one more data point regarding your disease.  It will not replace bone marrow biopsy soon but will serve as a deeply sensitive test for disease monitoring. 

Number 9: My Number One Takeaway

Myeloma is a complex disease with complex and numerous treatment options.  Please find a specialist.  Even if it’s for one consult.   

Number 10: Overall

This seminar was excellent!  Excellent presenters, excellent patients, excellent questions, excellent conversation, excellent food, excellent content. 

My takeaway:  Seminars such as this (and those offered by other organizations like Healthtree, MMRF, and LLS) provide a wonderful opportunity to learn the latest information regarding myeloma AND a warm, welcoming environment to promote networking among patients and families.  If you are interested and have a chance to attend, I highly recommend it.  I also recommend finding a support group (in-person or online).  Networking and friendships from support groups are invaluable. 

One final bonus to mention…the IMF really gets myeloma.  A table of blankets and pillows was stacked high for anyone needing a little extra comfort/support…myself included.  A soft pillow behind by hole-y spine and an ice-cold sparkling water from a glass bottle…I’m already looking forward to the next myeloma vacation.  Um…I mean, seminar.   

-Lisa 

This article is solely based off patient experience and is not intended to be a substitute for professional medical advice. Please consult with your physician or qualified health care provider with any questions you may have regarding your medical condition. 

True Patient Empowerment: Bridging the Myeloma Patient and Expert Voice

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Multiple myeloma can sometimes feel overwhelming and complicated, but what can patients and care partners do to help improve their care? With this question in mind, the Patient Empowerment Network initiated the START HERE Myeloma program, which aims to bridge the myeloma patient and expert voice to build empowerment. 

Myeloma patient and expert

START HERE Myeloma Program Resources

The program series includes the following resources:

Patient-Expert Q&A Webinar Topics and Key Takeaways

In the PatientExpert Q&A webinar, renowned multiple myeloma expert Dr. Sikander Ailawadhi from the Mayo Clinic shares his expert knowledge to help patients and care partners fortify their knowledge and confidence, while myeloma patient and Empowerment Lead Lisa Hatfield moderates the discussion and shares some of her views as a patient. Dr. Ailawadhi and Lisa provided some in-depth discussion along with key takeaways. Some of the discussion covered:

Among some key points, Lisa shared her perspective about seeing a myeloma specialist, “There is great importance in seeking out the expertise of a myeloma specialist, even if it’s just when you’re newly diagnosed, going for a consult once and then maybe upon relapse going again, if you don’t live near it, a specialist, seeking out the expertise of a specialist is really critical.”

Dr. Ailawadhi provided his expert perspective about recent developments in multiple myeloma research and treatments. “Myeloma treatment is going through a change where immunotherapy and harnessing the body’s own immune system is becoming extremely important. And when we do that, the immunotherapy is typically very targeted, so what these drugs these agents, these terms, this alphabet soup is doing is it is targeting specific markers on the myeloma cell on the plasma cell.” 

Dr. Ailawadhi also shared his excitement about the future of  myeloma care. “So why is this important for everybody, whether they are newly diagnosed or relapsed or long-term survivor with myeloma, because this tells you that not only are we getting newer drugs in the same classes, we are also getting brand new classes of drugs. And you can imagine that means that those brand new strategies are ways to target the plasma cell, we know cancer cells are smart, and they develop invasive mechanisms to become resistant to drugs. But every time something gets resistant if we have a brand new mechanism to go against the disease, but that’s exciting because that’s why we are seeing deeper responses, even in very heavily pre-treated patients, because we are using newer specific, relatively safe, convenient strategies to going after the plasma cell.”

Dr. Ailawadhi has also been very involved in researching and working to improve healthcare disparities, and he shared some of this knowledge during the webinar. “Kidney dysfunction can be seen in as much as 20 percent of patients at the time of diagnosis, and there are a significant number of patients who would have kidney dysfunction even as they go on with their myeloma journey. I’m interested in these healthcare disparities. I just want to point out that patients who are African Americans do tend to have a much higher incidence of kidney dysfunction and need for kidney dialysis with myeloma at the time of diagnosis or even with treatment.” 

Man using a tablet

Some program participants provided valuable testimonials about the START HERE Myeloma Patient-Expert Q&A webinar. 

  •   “I have been a myeloma patient for 8 years. This was one of the best webinars I have listened to. The speaker was excellent and the questions presented were great! Thank you for a wonderful session!”
  •   “This program was well thought out and I felt like Lisa was reading my mind! Super job. It makes living with a serious condition a little less scary when you see so many people have the same questions as you.”
  •   “Thanks for a great discussion. It felt like it wasn’t a lecture, but a conversation. Lisa is an inspiration to our support group members in South Carolina. We will be sharing this when we meet next week.”

We hope you can use these valuable multiple myeloma resources to build your knowledge and confidence toward becoming a more empowered patient or care partner.

Top Two Multiple Myeloma Advances in 2022

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What are the top two multiple myeloma advances in 2022? In the “Myeloma Treatment & Research Updates From 2022 ASCO and EHA Meetings” program, expert Dr. Krina Patel from The University of Texas MD Anderson Cancer Center shares promising news and research highlights from these important conferences. 

1.DETERMINATION Study

The American Society of Clinical Oncology (ASCO) 2022 conference had a highly anticipated multiple myeloma session with an update about the impact of stem cell transplants. The DETERMINATION study spent over 10 years studying patient outcomes for those who received a stem cell transplant when they were newly diagnosed versus those who didn’t receive a transplant. Researchers were encouraged by the data that showed those who received a transplant at diagnosis kept their myeloma at bay in progression-free survival mode for 21 months longer than those who didn’t receive transplant at diagnosis. In addition, patients who received a stem cell transplant at the point of their second remission experience a long period of progression-free survival or myeloma hibernation.

2. Antigen Studies

Studies on antigens, or sort of flags on multiple myeloma, examined new ways to target myeloma treatment. Researchers discovered the new antigens of FcHR5 and GPRC5D provide novel methods to attack the multiple myeloma. Clinical studies can now look at developing new treatments to attack these antigens. These discoveries are especially important and hopeful for multiple myeloma patients who’ve already received B-cell maturation antigen (BCMA) treatment and then relapse, since BCMA has been the focus of the antigen treatment approach.

Multiple myeloma researchers at the ASCO and EHA conferences have discovered exciting findings and hope for the future of myeloma care. The studies revealed advances for improving care options and for extending progression-free survival periods. If you want to learn more about multiple myeloma care and treatments, check out our multiple myeloma information.

Three Factors That Determine Myeloma Treatment Decisions

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What are the key factors under consideration to determine a multiple myeloma treatment approach? In “Key Factors That Guide Myeloma Treatment Decisions” program, expert Dr. Joshua Richter from Multiple Myeloma at the Blavatnik Family – Chelsea Medical Center at Mount Sinai explains how to determine optimal approaches.

 1. Disease-Related Factors

The growth rate of myeloma – whether fast-growing or slow-growing – is a key factor in treatment decisions. Treatment in pill form may be an option for slow-growing myeloma, while intravenous or other treatment methods may be necessary to treat fast-growing myeloma. 

2. Treatment-Related Factors

A myeloma specialist will also take treatment-related factors into account. Some of these considerations will include issues like whether a patient stopped responding – or was refractory – to another treatment. Or if a patient experienced treatment side effects that couldn’t be lessened enough through adjusting dosage or by other means, that should be considered as well.

3. Patient-Related Factors

Myeloma treatment options must also take other patient health concerns into account. Considerations like physical fitness, kidney health, heart health, and medical problems like high blood pressure and diabetes must be considered. In addition, the patient’s myeloma symptoms must be weighed in the analysis for treatment decisions.

Myeloma specialists have some key factors to consider in narrowing down an optimal treatment approach. If you’d like to learn more about multiple myeloma, check out our multiple myeloma information.

2022 ASH Meeting | Multiple Myeloma Takeaways

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This is my 17th year attending ASH (American Society of Hematology), where typically over 30,000 attendees from all over the world (hematologists/oncologists, lab researchers, oncology nurses, scientists and 300 pharma companies) attend. This year ASH was set up as a hybrid meeting where some attended in person and many, including myself, virtually. I’m grateful to the IMF (www.myeloma.org) and their sponsoring pharma donors Takeda, Amgen, and Karyopharm for registering me for ASH so that I could learn and subsequently share my patient perspective with you.

My Takeaways

This year’s ASH continued to expand our knowledge on immunotherapies…more CAR-T’s and bispecific antibodies (“T-cell directing therapies”)…as well as more targets besides BCMA…and most importantly, side effects such as cytopenia (lower blood counts), cytokine release syndrome (CRS), neurotoxicity, and infections.  At present, approved treatments in the area include CAR-T’s Abeca and Carvyti as well as the bispecific Tecvayli (Teclistamab), but these are currently only available for patients relapsed-refractory patients with >=4 lines of previous therapy.  The good news is that all of these CAR-Ts and bispecifics are in clinical trials for patients with fewer prior treatments, even newly diagnosed patients in some cases!

Another area that needs better treatment options are Multiple Myeloma (MM) patients considered High Risk (HR) or ultra-high risk (>1 HR factor), as well as High Risk Smoldering Myeloma (HR SMM). Whereas some current studies show that media Overall Survival for MM is 10 years, HR patients are typically half that.  And for HR SMM patients who have a good chance to progress to full blown MM within 2 years, is it possible that treatment at this pre-MM stage could delay progression or actually cure a patient from getting MM.

We know that if we achieve a Complete Response via blood tests which show no sign of an M-spike, that unfortunately the myeloma will still likely return, indicating that we still have myeloma but these tests are not sensitive enough to see it. Tests with more sensitivity are referred to as MRD (Minimal/Measurable Residual Disease) tests (Next Generation Sequencing and Next Generation Flow) from bone marrow biopsies and Mass Spectrometry tested via a patient’s blood. They are good prognosticators but typically not used to help guide treatment (for example, when to stop maintenance). If we knew when to stop treatment or change treatment, patients would more likely do better.

This leads to the discussion that we have many treatments available these days but what’s the best treatment for a patient being newly diagnosed, transplant-eligible or not, maintenance (for how long), treatment at first relapse, subsequent relapses? Many of the study results from ASH try to answer these questions via clinical trial results (but that’s still not a personalized treatment so it’s always important to ask your doctor questions and be part of that shared decision making).

Finally, the important topic of Diversity, Equity and Inclusion (DEI) was discussed more at this ASH than ever before and got its own Spotlight Education session. We need better representation of underrepresented populations in clinical trials. For example, 20% of MM patients are Black and yet they represent <5% of patients in MM trials. If we don’t improve upon this, trial results may lack internal validity resulting in poor external validity for the populations they are meant to serve.

For more patient information about ASH, there are many excellent webinars coming up from your favorite myeloma advocacy organization. And another great source are blogs written by patients (including myself) which you’ll find on the IMF website (https://ash2022blogs.myeloma.org/).

In summary, this year’s ASH continued to amaze me with so many studies in Myeloma, focusing on all stages from Smoldering Myeloma to MM Induction through Relapse. Clearly immunotherapy treatments, CAR-T’s and Bi-specific T-cell engagers were predominant among the oral presentations I attended, providing longer-term data on these new treatments. And importantly, other targets besides BCMA are being investigated.

For someone diagnosed with stage III MM 28 years ago with only 2 treatment options available (MP or VAD-SCT) and given 2-3 years expected survival, I’ve seen incredible progress since 2003 when Velcade was first approved followed by 14 more approvals and many combination therapies. While there continues to be unanswered questions, we now have many more effective treatments for MM, providing patients with better opportunities to manage their disease. Newly diagnosed MM patients can justifiably be more optimistic about their new diagnosis than at any other time in history. ASH2022 highlighted the tremendous advances we have made in treating this cancer for both the newly diagnosed and relapsed patient.

Myeloma Patient Profile: Sharing My Cancer Journey with My Daughter

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Part 1

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

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

Part 2

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

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

Part 3

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

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

Myeloma patient, Lori’s advice:

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

Myeloma care partner and advocate, Carleigh’s advice:

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

Myeloma Patient Profile: Jeff Boero

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

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

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

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

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

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

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

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

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

Support Resources

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Health & Disability Insurance

Federal & State Benefit Plans

Is It Too Late for a Myeloma Second Opinion?

Sujata Dutta: Sharing the Journey

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Check out Part I of Sujata’s story: Normalizing the Word Cancer

 

Sujata Dutta, Part 2 Sharing the Journey from Patient Empowerment Network on Vimeo.

Empowered multiple myeloma patient, Sujata Dutta, shares an overview of her treatment from a stem-cell transplant to a clinical trial, and how she chooses to see the positives in her journey.

Transcript:

So once I was diagnosed with multiple myeloma and I was actually informed about the standard of care. So standard of care with multiple myeloma today is typically a couple of cycles of chemo. So I had about five or six cycles of chemo to bring the M-spike to as low as you can, and then that’s followed with like a stem-cell transplant (an SCT) or bone marrow transplant – both are the same. In my case, it was an autologous stem-cell transplant which meant that I use my own stem cells which were extracted and stored and then given back to me.

 So then post-transplant, if the counts look good then you go into a maintenance routine. So I didn’t have succession of chemo before the stem-cell transplant. I had my stem-cell transplant at Mayo in Rochester, Minnesota and unfortunately, in my case, we did not achieve the results that we were expecting so my disease actually did actually not come down as much as we would have hoped. 

So, I had to go back on a chemo routine and I’m on that one right now. However, I actually am part of a clinical trial. I signed up to be part of a clinical trial that’s looking for newer ways of treatment which are shortening the time of treatment and also with the goal of improving the standard of you know care or like better lifestyle for the patients and like obviously longer life.

So, I’m part of a clinical trial that’s combining Revlimid and Daratumumab, which is like usually you would have an 8-hour hospital visit for the chemo, but in this I am just getting a subcutaneous injection in my belly. It’s a 5-minute injection so that’s not pleasant, but 8 hours compared to 5 minutes, it’s great.

So yes, I am back on chemo just so that we can bring the disease under control. But typically with standard of care with multiple myeloma is like couple cycles of chemo followed by a transplant. If you are eligible for one, and if you are ready for one, and then followed by maintenance. So that’s typically what happens with multiple myeloma.

But there are loads of other treatments that are coming up and researches that are happening, clinical trials that are happening, I would highly encourage it if you come across a clinical trial that interests you, speak to your doctors and see what they say. And if you’re eligible, it would be a great thing to do. I personally wanted to get involved in some kind of volunteering activity. I know that folks before me have done so much and I’m benefiting from that, I wanted to give back as well so I actually signed up for the trial. But other than that, that’s pretty much what the standard of care is today for multiple myeloma or what I know of.

I think one of the biggest takeaways from my cancer journey, I would say is learning to be appreciative of what I have. Learning the value of what I have, not that I did not know that, but I think this life changing kind of event that has happened has taught me even more of the value. For myself, what’s my worth? What’s the worth of somebody else in my life? What’s the worth of things around me in my life? And it has, so my journey has actually helped me understand these things and be appreciative of what I have. 

My husband he’s been my primary caregiver throughout this journey and we have actually like been on the journey together, so it has been an amazing journey I would say. 

We have discovered like a new relationship between us, like going for chemo, going to Mayo for 6 weeks, and we stay together and you know how much I appreciate what he has had to go through because of me. Like looking at me not being able to walk or not even being able to talk or even drink water because of the amounts of … that I had and supporting me through all of that. I really appreciated it. I appreciated my boys, like I have a 7th and a 6th grader, and for them to understand what I was going through and for them to be able to accept in the form that I was, has been great.

I have friends, I have family who have supported me throughout this so I really appreciate them being with me, being around me, supporting me, rooting for me, praying. There’s one thing that I tell everybody like you know there have been so many people known and unknown that have like you know helped me or prayed for me or rooted for me that I have no choice but to get better.

So you know I really appreciate what I have and I think I also appreciate the value of what I have, and like not think about what I don’t have. I am a believer that divine intervention happens, you don’t know why but everything has a reason and I think whatever happens, happens for the best. For even cancer, I think happens for the best.

For me to understand like what all I had and like how grateful I was for everything that I had. For me to go back to a hobby that I had almost forgotten. I paint, I used to paint and I’d almost given up on that through my journey. I was like I need to go back and do something else and I went back to painting. So like so many good things have come out of this, so you know I’m really grateful for whatever has happened and I’m quite positive for the future so I am looking forward to what’s in store for the future and I’m going to be positive keeping my fingers crossed. That’s my story for you.

A New Phase: Bruce Jackson

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Bruce Jackson is a multiple myeloma patient who recently found Patient Empowerment Network (PEN) as a resource for his cancer journey. This is the first of a two-part series in which he shares his story from diagnosis to living his life with cancer.

“You can do nothing, or you can do something…maybe it is simply advocating for yourself or advocating on behalf of someone else.”

I guess I haven’t thought of my cancer experience as a story, and yet, that is exactly what it is: a story about a new phase in my life. I have multiple myeloma. More specifically, it is a t(4-14) translocation wherein the 4th and 14th chromosome pairs, instead of minding their own respective business, decided to share their genetic information, and that sharing process is at the basis of the disease. I don’t know if researchers yet know the cause of these translocations; some say that they result from a virus, but I know very little more than that. My 4-14 translocation is deemed a moderately aggressive cancer, but there are other much more aggressive translocations which are functionally a one-year death sentence.

I was diagnosed in May 2009. I was 53 at the time and am now 64. In my case, I was seeing my primary care physician (PCP) every six months for treatment of high cholesterol. She was treating me with a statin drug, and she insisted on doing blood work every six months. The blood work revealed an elevated total protein level, and my PCP suspected cancer, so she sent me to an oncologist who confirmed the diagnosis of smoldering myeloma.

I think there are a couple of points to be made here. One, because of the blood panels every six months, my cancer was caught early. Two, while a smoldering myeloma diagnosis may seem relatively benign, it is not. The question is, when does it morph into something else, into what does it morph, and what do you do in the meantime?

For me, this meant tracking the disease through occasional (every six months) to more frequent (every three months) blood tests to track my M protein value, which is a pretty highly correlated indicator of what is happening in the bone marrow. On a lesser frequency, I would have a bone marrow biopsy, just to see whether what was happening in my blood stream still continued to correlate with what was happening in my bone marrow. When my M protein value was around 0.8, I started to see an oncologist regarding what was initially diagnosed as monoclonal gammopathy of otherwise unspecified origin (MGUS). Then in October 2014, my oncologist was citing M protein values of 3.6, but with no other symptomatic phenomena to address, except that an MRI had shown some very small unidentifiable spots on a few of my ribs and on my sternum. The MRI report suggested that I have a re-do in six months, and that is what happened, except I was now in the hands of a myeloma specialist, and she suggested that we re-test using a CT Scan. The scan revealed growth in the spots, enough so that we were now using the term “lesions”, which was the tipping point to starting treatment.

I started my treatment program as a part of a Dana Farber Cancer Institute study, which required a prescribed regimen of Velkade (a subcutaneous injection), coupled with Revlimid (Thalidomide derivative and sister drug to Pomalyst), and Dexamethasone (a common oral steroid, which generates a synergistic effect that aids in combatting the cancer). In my first cycle, the treatment knocked my M protein value down to less than 1.0. However, in the second round, the treatment induced some unplanned side effects, all at the same time. I experienced blood clots in my lower legs, an obstruction in my digestive tract, pulmonary emboli in my lungs, a half-collapsed lung, a respiratory infection, and a massive headache. This earned me a 10-day stint in the hospital, a paranoid reaction to one of the drugs that I was given, and removal from the Dana Farber study.

Unfortunately, the respiratory infection would not go away, and only six weeks later, it was determined that I needed to have a procedure done, wherein the surgeon puts three holes through my rib cage and inside my pleural cavity with the goal of removing scar tissue from the surface of my right lung so that the medication could reach and eliminate the infection. The procedure earned me 12 more days in the hospital.

The good news is I made it through both events, and I am here to share about it!

It was determined that the Dana Farber dosage was too much for my system, so the solution was to cut the dosage back to about two thirds, and then administer more rounds. My rounds of chemo ultimately led to a stem cell transplant in September 2015. The stem cell transplant was a 21-day hospital stint (which is a typical duration), but as can happen, things didn’t automatically jump-start as expected. After my transplant, everything was jump-starting except my platelets. Fortunately, it seems there is always an alternate plan of attack, and the hematologists were able to prescribe a three-day dose of medication that on day three bumped my platelet count from two to four, and I was on my way. Plan B worked, and I’m glad we did not have to go to Plan C, because I don’t know if there was a Plan C. There were other hiccups along the way. I started having blood clots in my lower legs again, and developed pre-ventricular contractions (PVCs), which feel like a skipped beat, but are actually extra beats, and amount to an arrhythmia of the heart.

After my stem cell transplant, I was given a prognosis of four to eight years, and I was only in partial remission. Once sufficiently recuperated, I had to take Velkade as chemo maintenance. However, because of the subsequent neuropathy, and associated deep venous thrombosis (DVT) in my lower legs, the decision after about two years was to switch to Revlimid. However, the truth of the matter is, your M protein does not stop increasing with the chemo maintenance. It simply increases at a slower rate, and if the drug stops working, problems arise. In my case, the Revlimid worked for another two years, but then things started to happen in 2020.

When the medication stops working, the problems that arise are one of two things: either the rate at which the M protein increases starts to accelerate, or your immune system loses the ability to adequately recover during the seven-day rest period. Your neutrophil (white blood cells) count drops due to the chemo, but if the counts do not climb back up, that means you have to take more days to recover, lower the chemo dosage, or get a booster shot to bump your neutrophils. Any of these options would, of course, allow the cancer to progress at a faster rate. In my case, the neutrophils were dropping and my M protein was climbing, which in essence means the chemo drug was no longer effectively slowing the progression of the disease. It was time to switch to another treatment.

I was given the option to investigate my choices, but because of the myriad options available, that turned into a whole bunch of, “I don’t know”. I finally settled on Daratumumab, Pomalyst and Dexamethasone, with Dara being subcutaneously injected (like Velkade was). Pomalyst is an oral Thalidomide-based sister drug of Revlimid, and Dex is well, Dex. Given that I am only just starting a third post-transplant treatment, I think I am doing well, especially if you consider that I am mid-way through my 12th year post-diagnosis and I am more than five years post-transplant that had an original prognosis of four to eight years.

When you consider where I have been, five years is good so far. I have not had any bones break, my cancer was caught early thanks to a competent PCP, I have only a moderately aggressive translocation, which is much better than more highly aggressive versions, which could have buried me in short order. But what bothers me most, regardless of all the other things that have happened during this experience, is the uncertainty of it all. I feel like I am always waiting for the other shoe to drop.

Learn the rest of Bruce’s story in part two of the two-part series in which he shares his story from diagnosis to living his life with cancer.

Read more patient stories here.

The Warrior in Me Saved My Life

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After experiencing increasing fatigue over the course of several years, I started to miss gatherings with friends and family and got to the point of taking one day off a month from work to sleep all day. This was unlike me as I was always very involved with professional and volunteer activities and had a very full schedule including parenting my young son with my spouse. After a lingering cold evolved into bronchitis, I began to explore what was wrong with the assistance of my primary care provider (PCP). I had mild persistent anemia, but nothing to warrant the degree of extreme fatigue that I was experiencing. She (my PCP) was very tolerant of my various Google-induced ideas, graciously accepting some to follow up with tests and others to set aside. 

After eleven months, a test showed that I had elevated M-proteins and my PCP sent me to a hematologist/oncologist who after greeting me reviewed several years’ worth of labs and then turned to tell me to come back in six months. She did not examine me. She did not ask me about my symptoms. She prepared to usher exit the room. I felt that I could not leave her office without her understanding how significantly the fatigue was impacting my daily life. This is when the inner warrior in me said NO! I did not move from my chair. I told her, “Nope. Now is the time that I need to tell you about my symptoms.” (Now this was somewhat uncomfortable for me because I have been well-trained to be polite and professional with doctors, but I had had enough. My New York elbows were coming out!) 

I read from a list that I had prepared detailing what I had been able to do prior to feeling unwell and what I could do now. As I went down the list for several minutes, she looked at her watch in a disgruntled manner, finally asking me “What do you want?” I told her that I wanted to feel well. I did not feel well and believed that something was wrong. I wanted her to do more tests. She agreed and also sent me out to schedule an appointment in six months. One week later at 8 AM as I was on my way out to work, SHE called me to tell me that she had scheduled a bone marrow biopsy (BMB) for the next day. I cleared my calendar. The BMB results confirmed that I had stage 2 Myeloma with more than 80 percent involvement in my bone marrow. My husband and I learned of this on the day before Thanksgiving. We were both in shock. We had so much to learn and at that point had no idea how much this diagnosis was going to change our lives. 

After a quick success of additional tests scheduled STAT, I started chemotherapy within two weeks. Getting a diagnosis took A LOT of persistence and determination when specialists minimized what I knew about my body — that something significant was wrong. And it was. Today is five years to the day of that diagnosis and I still wonder whether I would be diagnosed today if I had not INSISTED upon further testing. To her credit, the oncologist/hematologist did eventually acknowledge that I was right to press her to do more tests and that it was through my self-advocacy that I achieved a diagnosis.

What I would hope that others would take away from this story is how essential it is to be aware of your own body and to keep advocating (again and again) for yourself with doctors even when your symptoms are minimized. I was trained to advocate for others as a social worker, but it took intentional work to give myself permission to say no to doctors at first politely and then later not so politely to demand additional testing until an outcome was achieved that explained my health issues. Be persistent. You know more about your symptoms than anyone else. Do not stop until you find out what is going on with your body.

Checking the Pulse on Multiple Myeloma Health Disparities

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Even before the coronavirus pandemic arrived, health and patient support organizations made resolute efforts to examine and address health inequities for multiple myeloma patients in Black, Indigenous, and People of Color (BIPOC) communities. Diverse Health Hub and the Patient Empowerment Network partnered to help improve health outcomes for underserved myeloma patients through the Diverse Partners in Your Myeloma Care program. With a tumultuous year filled with the killing of George Floyd, social unrest, and coronavirus health disparities for BIPOC groups, these issues prompted us to focus on where things stand with multiple myeloma health disparities. We’ll take a look at what we know, what we’ve learned, and what help and resources are needed to continue advancing care for BIPOC myeloma patients.

Disparity Facts About BIPOC Myeloma Patients

  • Both Black Americans and Latina and Latino Americans show a myeloma precursor called MGUS, or monoclonal gammopathy of undetermined significance, more frequently than others—.88 percent in Black Americans, .44 percent in Latina and Latino Americans, and .22 percent in white Americans.

  • Although multiple myeloma is diagnosed at a younger age in both Black Americans and Latina and Latino Americans, both groups are less likely to receive a transplant and start treatment later than patients of other races.

  • Black Americans are actually known to have less aggressive myeloma, which should show better health outcomes—yet that is not the case.

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Learnings About BIPOC Myeloma Patients

Black and other BIPOC patients often have mistrust of doctors and researchers due to past experiments like the Tuskegee Study and Henrietta Lacks – whose now infamous immortal HeLa cells were taken without her consent. “If I were to walk into any community, African American community, or underserved 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 healthcare,” says patient navigator Diahanna Vallentine.

Barriers to care must be overcome according to Dr. Sikander Ailawadhi from the Mayo Clinic, “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.”

Improvements are happening in care as explained by Dr. Ajay Nooka from Emory University School of Medicine, “What’s really interesting in this meeting is that there has been a lot of large database integrations, including one database called the National Cancer Database (NCBD) where people have looked at 20-year history of how these treatments have panned out. Which of the minority populations or which subset of patients gained the most benefit over the last 20 years? And we see minorities have gotten a lot of improvement and a lot of access to care over the last 20 years, but that’s not the end of the story, we have to catch up a lot more.”

The Path to Health Equity

Although the additional focus on health inequities has started to improve access to care, there is still a critical need to raise awareness about the treatment gaps for myeloma patients in BIPOC populations. 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 better health outcomes?

Some valuable steps that patients, community leaders, and healthcare providers can take to improve care include:

  • Support organizations providing educational materials to patients that are target specific BIPOC groups

  • Patients and advocates making the BIPOC voice heard by asking for funds from community and political leaders to improve care

  • Healthcare providers developing relationships and partnerships with political leaders and support organizations to continue building momentum in improving patient care

  • Patients taking advantage of social workers and patient navigators at their clinics and support organizations

  • Patients, advocates, and healthcare providers working to increase clinical trial participation

  • Healthcare providers integrating cultural competency as a universal approach in the healthcare model

Resources like myeloma patient resource guides, informational graphics, and the Myeloma Coach section on the Myeloma Crowd website provide valuable information for patients. And though trust of clinical trials by BIPOC populations remains an issue, there are initiatives like Diversity in Clinical Trials Benefits Everyone. BIPOC patients can take action working together with medical researchers to increase clinical trial participation to improve and refine myeloma treatment developments for specific patient populations. If you want to explore options in your treatment, seek out resources that embrace diversity in clinical trials. The “All of Us” program is a public health initiative designed to remove the barriers that prevent inclusive access.

Participating in clinical trials not only will improve myeloma treatments down the line but also provides a minimum of standard of care treatment at no cost to the patient. It’s a win-win for both the patient who participates in the study and  also helps the progression of treatment for BIPOC patients diagnosed with myeloma in the future. Though progress has been made, patients, advocates, community leaders, and healthcare providers must take action to continue an upward movement to achieve equitable care that BIPOC myeloma patients deserve. Take advantage of the resources below and continue to visit our Multiple Myeloma Hub as we publish more on health equity developments for multiple myeloma.

Resources to Learn About Improving Myeloma Health Disparities

Disparities Around Health Technology Access for Subset of Myeloma Patients

Good News for Myeloma Treatment Today – Still Addressing Race-Associated Risks

2020 Shaping Up to Be a Big Year for Multiple Myeloma Treatment

How Can a Myeloma Patient Advocate/Financial Advisor Help

Is It Possible to Achieve Health Equity in Multiple Myeloma?

Are Myeloma Clinical Trials More Critical for African Americans?

A Multiple Myeloma Advocate’s Uphill Battle to Care

What Do Disparities in Multiple Myeloma Look Like?

How a Second Opinion Saved a Myeloma Patient’s Life 

Myths vs. Facts: Myeloma Health Disparities Care Infographic

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

Diversity in Clinical Trials Benefits Everyone

Sources

How Can a Myeloma Patient Advocate/Financial Advisor Help? Patient Empowerment Network website. https://powerfulpatients.org/2020/08/17/how-can-a-myeloma-patient-advocate-financial-advisor-help/ Accessed October 19, 2020.

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

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“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.

Understanding Clinical Trials: A Jargon Buster Guide

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When it comes to cancer treatment you or a loved one may be considering participating in a clinical trial as a treatment option.  Clinical trials are designed to evaluate the safety and effectiveness of a treatment. They may involve researchers administering drugs, taking blood or tissue samples, or checking the progress of patients as they take a treatment according to a study’s protocol.

Learning about clinical trials can be a steep learning curve – not least because the process comes with a lot of new terms, acronyms and jargon.  To help you, I’ve put together this list of the most common terms you will find when you are researching clinical trial information. This is not an exhaustive list but it is a helpful starting point. At the end of this article you will see links to find more information.

Adverse Effects (AE)

Also called Adverse Events, or Adverse Drug Reaction, AEs are any harmful event experienced by a person while they are having a drug or any other treatment or intervention. In clinical trials, researchers must always report adverse events, regardless of whether or not the event is suspected to be related to or caused by the drug, treatment or intervention.

Arm

Subsection of people within a study who have a particular intervention.

Bias

Bias is an error that distorts the objectivity of a study. It can arise if a researcher doesn’t adhere to rigorous standards in designing the study, selecting the subjects, administering the treatments, analysing the data, or reporting and interpreting the study results. It can also result from circumstances beyond a researcher’s control, as when there is an uneven distribution of some characteristic between groups as a result of randomization.

Blinding

Blinding is a method of controlling for bias in a study by ensuring that those involved are unable to tell if they are in an intervention or control group so they cannot influence the results. In a single-blind study, patients do not know whether they are receiving the active drug or a placebo. In a double-blind study, neither the patients nor the persons administering the treatments know which patients are receiving the active drug. In a triple-blind study, the patients, clinicians/researchers and the persons evaluating the results do not know which treatment patients had. Whenever blinding is used, there will always be a method in which the treatment can be unblinded in the event that information is required for safety.

Comparator

When a treatment for a specific medical condition already exists, it would be unethical to do a randomized controlled trial that would require some participants to be given an ineffective substitute. In this case, new treatments are tested against the best existing treatment, (i.e. a comparator). The comparator can also be no intervention (for example, best supportive care).

Completed

A trial is considered completed when trial participants are no longer being examined or treated (i.e. no longer in follow-up); the database has been ‘locked’ and records have been archived.

Control

A group of people in a study who do not have the intervention or test being studied. Instead, they may have the standard intervention (sometimes called ‘usual care’) or a dummy intervention (placebo). The results for the control group are compared with those for a group having the intervention being tested. The aim is to check for any differences. The people in the control group should be as similar as possible to those in the intervention group, to make it as easy as possible to detect any effects due to the intervention.

Efficacy

How beneficial a treatment is under ideal conditions (for example, in a laboratory), compared with doing nothing or opting for another type of care. A drug passes efficacy trials if it is effective at the dose tested and against the illness for which it is prescribed.

Eligibility Criteria/ Inclusion and Exclusion Criteria

Eligibility criteria ensures patients enrolling in a clinical trial share similar characteristics (e.g. gender, age, medications, disease type and status) so that the results of the study are more likely due to the treatment received rather than other factors.

Follow-up

Observation over a period of time of participants enrolled in a trial to observe changes in health status.

Informed Consent

A process (by means of a written informed consent form) by which a participant voluntarily agrees to take part in a trial, having been informed of the possible benefits, risks and side effects associated with participating in the study.

Intervention

The treatment (e.g., a drug, surgical procedure, or diagnostic test) being researched. The intervention group consists of the study participants that have been randomly assigned to receive the treatment.

Investigator

A person responsible for the conduct of the clinical trial at a trial site. If a trial is conducted by a team of individuals at a trial site, the investigator is the responsible leader of the team and may be called the principal investigator (PI).

Multicentre Trial

A clinical trial conducted according to a single protocol but at more than one site, and therefore, carried out by more than one investigator.

Number needed to treat (NNT)

The average number of patients who need to receive the treatment or other intervention for one of them to get the positive outcome in the time specified.

Outcome Measures

The impact that a test, treatment, or other intervention has on a person, group or population.

Phase I, II, III and IV Studies

Once the safety of a new drug has been demonstrated in tests on animals, it goes through a multi-phase testing process to determine its safety and efficacy in treating human patients. If a drug shows success in one phase, the evaluation moves to the next phase

  • Phase 1 tests a drug on a very small number of healthy volunteers to establish overall safety, identify side effects, and determine the dose levels that are safe and tolerable for humans.
  • Phase II trials test a drug on a small number of people who have the condition the drug is designed to treat. These trials are done to establish what dose range is most effective, and to observe any safety concerns that might arise.
  • Phase III trials test a drug on a large number of people who have the condition the drug is designed to treat. Successful completion of Phase III is the point where the drug is considered ready to be marketed.
  • Phase IV trials can investigate uses of the drug for other conditions, on a broader patient base or for longer term use.

Placebo

A fake (or dummy) treatment given to patients in the control group of a clinical trial.  Placebos are indistinguishable from the actual treatment and used so that the subjects in the control group are unable to tell who is receiving the active drug or treatment. Using placebos prevents bias in judging the effects of the medical intervention being tested.

Population

A group of people with a common link, such as the same medical condition or living in the same area or sharing the same characteristics. The population for a clinical trial is all the people the test or treatment is designed to help.

Protocol

A plan or set of steps that defines how something will be done. Before carrying out a research study, for example, the research protocol sets out what question is to be answered and how information will be collected and analysed.

Randomized Controlled Trial (RCT)

A study in which a number of similar people are randomly assigned to 2 (or more) groups to test a specific drug, treatment or other intervention. One group has the intervention being tested; the other (the comparison or control group) has an alternative intervention, a placebo, or no intervention at all. Participants are assigned to different groups without taking any similarities or differences between them into account. For example, it could involve using a computer-generated random sequence. RCTs are considered the most unbiased way of assessing the outcome of an intervention because each individual has the same chance of having the intervention.

Reliability

The ability to get the same or similar result each time a study is repeated with a different population or group.

Sample

People in a study recruited from part of the study’s target population. If they are recruited in an unbiased way, the results from the sample can be generalised to the target population as a whole.

Subjects

In clinical trials, the people selected to take part are called subjects. The term applies to both those participants receiving the treatment being investigated and to those receiving a placebo or alternate treatment.

Trial Site

The location where trial-related activities are conducted.

References

The Canadian Institutes of Health Research (CIHR)

TROG Cancer Research

ICH.org

NICE

Further Resources

American Society of Clinical Oncology’s Cancer.Net trials site

National Cancer Institute (NCI) Clinical Trials lists open and closed cancer clinical trials sponsored or supported by NCI. 

ClinicalTrials.gov database of privately and publicly funded clinical studies

CenterWatch Clinical Trials Listing

Medication Maintenance Tips for Caregivers

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Managing medications can be difficult to do, especially if you’re a senior caregiver. Helping someone else remember to take medications on time and work to find the right balance for them can seem like a daunting task. Thankfully, we’ve got a list of tips and tricks to help make things flow more smoothly.

Make Sure Providers Are Aware Of Vitamins And Supplements

Medical providers should be aware of any vitamins and supplements a person is taking. Regardless of how natural they are, they can interfere with medications and other treatments. For example, someone on blood thinners should not be taking a supplement with vitamin K. Most blood thinners work by inhibiting the production of this vitamin in the body. Taking a vitamin K supplement can negate the work of blood thinners.

Instructions

Make sure to go over medication instructions with the senior you’re caring for. If they are able to, they should know the names of each medication along with dosages and what times to take them. It doesn’t hurt to type up instructions about medications so that all information is in one place and easy to access. Consider adding in what side effects they should seek help for. That can serve as a list for caregivers and seniors to check on in case of adverse events.

Alarms

Set alarms to remind seniors to take their medications. There are many options to choose from. Smartphones allow you to set up reminders with different sounds each time which can help people differentiate between medication doses and other alerts. Electronic personal assistants like Alexa or Google Home can easily be used for reminders as well. If the senior you’re caring for struggles with newer technology, consider a few alarm clocks around the home.

Keep A List

Keeping a list of medications can help seniors and caregivers alike remember what medications are due at what time. Lists that have both a visual of what the medications look like and allow people to check off a medication dose can be useful tools. If you’re going with this kind of list, make sure that you have multiple copies. Placing one next to a pill organizer and another on the fridge can help remind people to take medication before they’ve even missed a dose.

Smartphone apps can also be helpful in tracking this information.

Follow Up

It’s important not to just set alarms or reminders, but check in to ensure that someone has taken their medication. It can be easy to turn off an alarm and still forget to take medication as scheduled. Following up with the senior in your life can remind them that they didn’t take their most recent dose.

Store Medications Properly

Most medications do best when stored between 68 and 77 degrees Fahrenheit. Additionally, many of them need to avoid humidity, direct sunlight and more. Medications should not be stored in vehicles, on windowsills or other sunny and warm spots or even in the bathroom. Consider storing them in a cool, dry space in the kitchen or living space.

When medications aren’t stored properly, it can affect their potency and make them potentially dangerous. If you’re concerned that your senior’s medications have been affected, here’s what you need to watch out for:

  • Odd smells
  • Discolored pills, tablets and injections
  • Cracked or crumbled pills
  • Pills and tablets that are stuck together
  • Creams and ointments that show separation
  • Cloudy injections

If you see these signs, contact your senior’s pharmacist as soon as possible.

Sort Medications Into Pill Organizers

Set aside time each week to go through the medication your senior takes and place them into pill organizers. These can make it easier to remember to take medications as prescribed or even transport them while traveling. Some organizers can remind people to take their medications and even alert others that a dose has been missed.

Make Sure All Caregivers Know About Medications

A sure way to have seniors miss their medication doses is to have senior caregivers who aren’t on the same page. Without everyone being in the know, it becomes increasingly difficult to set reminders and follow up with seniors about medication doses.

Plan Ahead For Refill Needs

Refills may come up on days where a senior is alone. When that’s the case, they may forget or be unable to pick up their refilled medications. Refills may even be due when someone is planning to be out of town. Make sure to plan ahead adequately for refills and work with a person’s pharmacist.

Consider Compounding Medications If Needed

Compounding is a process where medication is tailored to a person’s specific needs. This can help remove any dyes a patient is allergic to or turn a pill into liquid for those who struggle with swallowing pills.

Get Tips from A Medical Provider

When methods to help your senior aren’t working as well as you had hoped, take some time to check in with their medical providers. Nurses have amassed a wealth of information on improving their patients’ quality of life. They are likely to have some ideas on how to make managing medications more effective.

Always Communicate With Family Members

Whatever steps you take to maintain a senior’s medication schedule, make sure that you’re communicating any difficulties with the senior’s loved ones. Family should also always be aware of any medication changes. When so many seniors rely on a variety of paid and family caregivers, it’s incredibly important for everyone to be in the loop on the storage, administration and organization of all medications, vitamins and supplements.

How to Read and Understand a Scientific Paper

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In a previous article, How to Read Beyond the Headline: 9 Essential Questions to Evaluate Medical News, I recommended you should always try to read an original study (if cited) to evaluate the information presented. In this follow-on article, you will learn how to read a scientific research paper so that you can come to an informed opinion on the latest research in your field of interest.  Understanding research literature is an important skill for patient advocates, and as with any skill, it can be learned with practice and time.

Let’s start by looking at what exactly we mean by the term “scientific paper”. Scientific papers are written reports describing original research findings. They are published in peer reviewed journals, which means they have been refereed by at least two other experts (unpaid and anonymized) in the field of study in order to determine the article’s scientific validity.

You may also come across the following types of scientific papers in the course of your research.

•       Scientific review papers are also published in peer reviewed journals, but seek to synthesize and summarize the work of a particular sub-field, rather than report on new results.

•       Conference proceedings, which may be published in a journal, are referred to as the “Proceedings of Conference X”. They will sometimes go through peer review, but not always.

•       Editorials, commentaries and letters to the editor offer a review or critique of original articles. They are not peer-reviewed.

Most scientific journals follow the IMRD format, meaning its publications will usually consist of an Abstract followed by:

•       Introduction

•       Methods

•       Results

•       Discussion

 

Let’s look at each of these sections in turn.

(a) Introduction  

The Introduction should provide you with enough information to understand the article. It should establish the scientific significance of the study and demonstrate a relevant context for the current study.  The scope and objectives of the study should be clearly stated.

When reading the Introduction, ask yourself the following questions:

·       What specific problem does this research address?

·       Why is this study important?

(b) Methods

The Methods section outlines how the work was done to answer the study’s hypothesis. It should explain new methodology in detail and types of data recorded.

As you read this section, look for answers to the following questions:

  • What procedures were followed?
  • Are the treatments clearly described?
  • How many people did the research study include? In general, the larger a study the more you can trust its results. Small studies may miss important differences because they lack statistical power. Case studies (i.e. those based on single patients or single observations) are no longer regarded as scientific rigorous.
  • Did the study include a control group? A control group allows researchers to compare outcomes in those who receive a treatment with those who don’t.

 (c) Results

The Results section presents the study’s findings.  It should follow a logical sequence to answer the study hypothesis.  Pay careful attention to any data sets shown in graphs, tables, and diagrams. Try to interpret the data first before reading the captions and details.  If you are unfamiliar with statistics, you will find a helpful glossary of terms here.  Click here for an online guide to help you understand key concepts of statistics and how these concepts relate to the scientific method and research.

Consider the following questions:

  • Are the findings supported by persuasive evidence?
  • Is there an alternative way to interpret these findings?

(d) Discussion 

The Discussion places the study in the context of the broader field of research. It should explain how the research has moved the body of scientific knowledge forward and outline the next steps for further study.

Questions to ask:

•       Does the study have any limitations? Limitations are the conditions or influences that cannot be controlled by the researcher.  Any limitations that might influence the results should be mentioned in the study’s findings.

  • How are the findings new or supportive of other work in the field?
  • What are some of the specific applications of the study’s findings?

The IMRD format provides you with a useful framework to read a scientific paper. You will need to read a paper several times to understand its findings. Consider your first reading of the study as a “big picture” reading.  Scan the Abstract for a summary of the study’s principal objectives, the methods it used and the principal conclusions. A well-written abstract should allow you to identify the basic content of an article to determine its relevance to you.  In describing how she determines the relevance of a study, research RN, Katy Hanlon, focuses on “key words and phrases first. Those that relate to the author/s base proposal as well as my own interests”.  Medical writer, Nora Cutcliffe, also scans upfront “to gauge power and relevance of clinical trial data”. She looks for “study enrollment (n), country and year”. It’s important to note the publication date to determine if this article contains the latest findings or if there is more up-to-date research available. Cutcliffe also advises you should “note author affiliations and study sponsors”.  Here you are looking out for any potential bias or vested interest in a particular outcome.  Check the Acknowledgments section to see if the author(s) declare any financial interests in the research which might bias their findings. Finally, check if the article is published in a credible journal.  You will find reputable biomedical journals indexed by Pubmed and Web of Science.

Next, circle or take note of any scientific terms or keywords you don’t understand and look up their meaning before your second reading. Scan the References section – you may even want to read an article listed here first to help you better understand the current study.

With the second reading you are going to deepen your comprehension of the study. You’ll want to highlight key points, consult the references, and take notes as you read.  According to the scientific publisher, Elsevier, “reading a scientific paper should not be done in a linear way (from beginning to end); instead, it should be done strategically and with a critical mindset, questioning your understanding and the findings.”  Scientist, Dr Jennifer Raff, agrees. “When I’m choosing papers to read, I decide what’s relevant to my interests based on a combination of the title and abstract”, she writes in How to read and understand a scientific paper: a guide for non-scientists. “But when I’ve got a collection of papers assembled for deep reading, I always read the abstract last”. Raff explains she does this “because abstracts contain a succinct summary of the entire paper, and I’m concerned about inadvertently becoming biased by the authors’ interpretation of the results”.

When you have read the article through several times, try to distill it down to its scientific essence, using your own words. Write down the key points you have gleaned from your reading such as the purpose of the study, main findings and conclusions. You might find it helpful to develop a template for recording notes, or adapt the template below for use. You will then have a useful resource to find the correct reference and to cross reference when you want to consult an article in the future.

In the example below I have taken an article published in 2015, as an example. You can read the paper Twitter Social Media is an Effective Tool for Breast Cancer Patient Education and Support: Patient-Reported Outcomes by Survey on PubMed.

Template for Taking Notes on Research Articles

 

 

Further reading