Last week we hosted a “Healthcare Trends: Are They Here to Stay?” #patientchat. The #patientchat community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.
Quinoa Stuffed Bell Peppers from Patient Empowerment Network on Vimeo.
Bell peppers, also called Capsicum annum, are members of the nightshade family of plants. Originating from South America, a wild variety of bell peppers had seeds that dated back to 5000 BC. Though bell peppers had been widely consumed in South America, Central America, and Mexico, it was Spanish explorers and Christopher Columbus who brought these peppers to Europe where they became popularized. Relatives of bell peppers in the nightshade family include tomatoes, eggplant, and potatoes. Paprika is the ground spice made from dried red bell peppers.
Bell peppers are packed with vitamins, minerals, antioxidants, and water. Fresh bell peppers are made up of 92 percent water. Most notably, red bell peppers are especially high in vitamin C and the antioxidant capsanthin. One medium red bell pepper supplies 169 percent of the recommended daily intake of vitamin C. Bell peppers also supply vitamin A, vitamin B6, vitamin E, vitamin K1, folate, potassium, lutein, luteolin, quercetin, and violaxanthin. With the vitamins, minerals, and antioxidants found in bell peppers, they are touted as a healthy food that also helps fight cancer and conditions like heart disease. In supplying a combination of both iron and vitamin C, bell peppers help fight iron anemia with vitamin C aiding the body in the absorption of iron. The antioxidant carotenoids of zeaxanthin and lutein found in bell peppers help protect eye health and against oxidative damage to the eyes.
Yellow, orange, and red bell peppers are really green bell peppers that have ripened and have increased in sweetness during the ripening process. Covering a large part of the color rainbow, bell peppers are available in red, orange, yellow, green, purple, white, and striped varieties. Red bell peppers boast a high vitamin C content – twice the amount contained in green bell peppers. Even with their bitter flavor, green bell peppers are the most popular bell pepper in the United States. Though many think that bell peppers are vegetables, they are actually fruits like others from the nightshade family. Yellow and red bell peppers contains four times the amount of vitamin C compared to oranges, and purple bell peppers have a similar bitter taste like green bell peppers.
See all recipes from the Cook & Learn series here.
“Can I toss these?” my guy said grabbing the vase of wilting daffodils.
“No,” I shouted. “Please, no. I’m trying to find the beauty in dying,” I said.
I’ve been taking pictures of these flowers since I got them. First, they were tight and closed, then blaring yellow in open-hearted pride, and then, slowly they began to brown and shrivel up. But they are still alive, like me, and that is worthy of notice and celebration.
I’m not ready to add them to the compost bin, not ready to empty the water around their green stems. I can still see the beauty they are as what they were fade. Yes, it’s true, they are not as bright or healthy as they were. But on the planet still and with some life left in them yet, they are. Can I pause to appreciate this not only in myself but in others?
I’ve had a few shit-my-pants scared kinds of nights. It’s not just that recurrence means I can’t be cured, the crap news no one wants but that most of us with ovarian cancer will indeed get. I’ve mostly wrapped my heart and brain around that. I’ve grieved and mourned the old woman I am unlikely to become. I’ve realized there’s no guarantee I’ll be around for graduations, weddings, births, and even the death of others.
“The chances are 50/50 you will be alive in three years,” my oncologist said when pressing me on doing more chemo and maintenance therapies.
“But how much of that time is dying?” I asked, somewhat dismissively.
“None of it if you are alive,” he said. And here, it is important to share that my oncologist is both doctor and minister and though I’m not religious, it is one of the things I love most about him, that and his kindness and responsiveness. Once, when I was fretting, he said, “Never worry alone.” I love a doctor who invites you to share your worries and concerns, and who means it as well. I also have his cell phone and email and he texts me almost immediately after scans. This is invaluable and generous and rare, from what I have heard.
But, in the last few months, I’ve had trouble breathing, exercising, and exerting on any level. I spent a day in the ER ruling out a pulmonary embolism, getting cardiac work-ups, follow-ups, and a specialist appointment to see if I have a right atrial enlargement. The thing about cancer is that it’s not even the cancer that causes most of the problems, but the cancer treatments including chemo, immunotherapy, maintenance drugs as well as all of those in combination. And that’s after surgery, for most, and for some it also means radiation treatment.
The longer I live with cancer, the more often I go to the doctor’s office. I kept saying, “It feels like I’m on chemo but I’m not on chemo,” as though this should be a red flag, an alarm, and mean something significant. It didn’t.
And then, the breathing got even worse, and there was pain that made it hard to sleep, stand, walk, workout, or be. Sometimes the pain was heavy, like a hardness in my chest, or like a weighted blanket on my back. Other times, when I sneezed or hiccupped or breathed in deep it was more like a shooting pain beneath the ribs in my back and was like a bad back where the times you find comfort are far outnumbered by the hours when everything hurts.
Sure enough, there was fluid in my right pleural space beneath my lung. My back got “tapped” like a keg, and it looked like a pitcher of beer was drained from me. Immediately, I felt better – not so much in terms of pain relief but in energy, ability to walk stairs, stand upright for hours, and clean the house. I felt sort of like myself and it made me realize how bad it had actually got. It happened slowly and I thought I was just lazy and out of shape.
I wanted the fluid in my lung to be from the Moderna shot or even maybe a past case of COVID, but the most likely thing, malignant cells and cancer as the cause were indeed what it turned out to be.
Even when I think I’ve sort of realized I might not get to 58 or 60, then it occurs to me that I might not even make it to my next birthday. “Whew,” my oncologist texted when I told him that the pulmonary embolism the PA said meant would require immediate blood thinners and hospitalization, was actually not a pulmonary embolism but a pleural effusion.
How does a mistake like that happen? Is it just from a quick glance of someone in a hurry? Pulmonary embolism and pleural effusion sort of look and sound alike and if you aren’t used to treating cancer patients maybe seem more similar than different.
I don’t know I only know that it’s terrifying to Google pleural effusion and cancer and so I’m not even going to Google pulmonary embolism and cancer. I’ll trust my oncologist’s “whew” and try to think of this as better than it could have been otherwise news.
But, when my oncologist called me about a week later with the cytology and said it was positive, I said, “not as in good news, but positive for cancer, right?”
“Yes,” he said, “Positive for cancer so negative news.”
“Got it,” I said.
“The lymph node growth is small,” he said, “but the recurrence is real.”
Somehow I still feel optimistic. I don’t know if I’m in denial, if it’s all my loved ones lathering me with prayers, calls, and kindness or a bit of both. I am exploring low-dose chemotherapy combined with off-label drugs. I’m not so keen on clinical trials as I used to be given that I wasn’t able to be unblinded when I had cardiac, lung, and even Moderna vaccine related questions about it and when I was (or was not) on PARPs or immuno or both or just placebo.
All I know for sure is that dying is not dead, though I was irritated when my oncologist first said this. I am alive. I am living. This is the way my life is right now and maybe it gets better and maybe it gets worse. I don’t know that yet. And neither, really, does anyone!
“I’ve lived with someone with ovarian cancer,” I told my oncologist, “And dying isn’t the same as living – and can include a lot of misery as well as closeness and intimacy.”
He may treat hundreds and thousands with ovarian cancer but I have the disease and loved and lived with my Nana when she did. I can’t help but think of what those who love me will go through if I get worse, and worse, and worse, and worse. Is there any way we can all see this as life and living? I don’t want to waste my time worrying about death which will come for each and every one of us. But sometimes I do.
I’m trying to savor all forms of beauty and life, including honoring and acknowledging the shifts, changes, and even the breaking and withering. That too is part of life and is why I am glad my oncologist sometimes talks like a minister. Sometimes it takes me a minute or even months to hear and listen and trust and believe him.
Today, I walk the beach with loved ones and furry companions. Today, the sun is shining. Today, I have no horrible or distracting pain. Today, I am aware and awake and have had an exceptionally good week.
Today, I love these daffodils. Today, I can see they are not yet dead while also knowing they are dying. Dying is a also a kind of living and one I’m learning how to appreciate. And if I get more days and times, if my bloom and color returns, I will appreciate it even more. If it doesn’t, that too is a way of life and one we should all learn to notice, accept, and even embrace. We all know, “No one gets out of here alive,” but how many really integrate that knowledge into our way of living? I didn’t. And I hope you don’t have to get cancer to do so.
See below. The same flowers. Two types of beauty.
When not recovering or coping with her recent ovarian cancer diagnosis, chemo brain, and the other treatment-related side effects, Christine “Cissy” White works as Community Manager of the Parenting with ACEs community on ACEs Connection and blogs at www.healwritenow.com. White has been published in The Boston Globe, Spirituality and Health, Ms. Magazine, The Mighty, To Write Love on Her Arms, Elephant Journal, the Center for Health Journalism, and ACEs Too High. She is the 2019 recipient of the Touching Trauma at Its Heart Award, given by the Attachment Trauma Network for her work advocating on behalf of families coping with traumatic stress from developmental trauma. White has led Parenting with ACEs, Parenting After Trauma, and Writing to Heal workshops and speaks passionately about the need for first-person perspectives and the power of lived expertise. Her survivor-led advocacy has been written about in The Atlantic, Huffington Post, and The Mighty.
According to recent data from the American Cancer Society, 19 million new cancer cases were diagnosed in 2020 alone. However, times are changing, and cancer patients now have access to better treatment and thus an increased chance of survival. But sometimes the cancer treatment itself has detrimental effects on the body, especially the heart. This can predispose patients to heart diseases or worsen already existing symptoms. Furthermore, chemotherapy, radiation and immunotherapy can cause abnormally high blood pressure, arrhythmia, and in extreme cases, even heart failure. It is important, therefore, not to overlook the health of the heart, as it is vital to the chances of survival when undergoing treatment for cancer. The good news, however, is that the heart can be cared for through healthy life choices, and there’s a lot patients can do to protect themselves throughout their treatment.
Chemotherapeutic agents in use during cancer treatment have been extensively studied for years and have some known side effects during the course of therapy. Drugs, such as Adriamycin, which is widely used as the first line of treatment for breast cancer, lymphoma, and leukemia, are known to have the highest risk of developing heart-related symptoms, with a 2% risk for developing heart failure. Two percent might not seem significant, but if combined with another chemo agent, Herceptin, which is used for HER2+ breast cancer patients, the lifelong risk for heart failure is now increased to 8-30%. In fact, adding stress to an already weakened cardiac system can lead to sudden cardiac arrest, which occurs when the heart stops beating suddenly, and is the leading cause of death in the US.
Although the side effects of some therapies are frightening, it is necessary to weigh up the pros and cons of undergoing chemotherapy. The cardiac problems are rarely present in those undergoing cancer treatment, but often enough that cardiac care and prevention should be focused on before the beginning of therapy. Over time, inflammation can lead to sudden irritation in the cardiac system, which can cause the formation of plaques and blood clots. This will also lead to triggers of a sudden heart attack.
Even with the advancements in medical innovations, treating cancer is not yet a precise science. Before chemotherapy can be authorized to begin by your oncologist, your medical history and results from various tests will be discussed by the medical team to pursue the most efficient treatment. Chemotherapeutic plans are specially tailored to each patient to ensure the best possible outcome and to not interfere with other conditions. During the course of treatment, regular check-ups to monitor the heart for potential conditions are vital so that problems can be found and addressed early on. Healthy lifestyles such as nutritious eating habits, daily exercise, and keeping blood pressure under control are additional, yet vital, ways to keep your heart healthy.
Detecting cardiac symptoms early is key in the treatment of heart problems. To protect your heart during and after treatment, pay attention to your entire body and maintain regular check-ups with your doctor. Not only will doing so give you peace of mind, but it will also pave the way for living a longer and healthier life.
AML expert Dr. Jeffrey Lancet shares news from the 2020 American Society of Hematology (ASH) annual meeting. Dr. Lancet sheds light on headlines from the meeting including FLT3 inhibitor research, combination therapies with venetoclax, a promising inhibitor therapy, and shares his optimism about the future of AML treatment.
About the Guest:
Dr. Jeffrey Lancet is Chair and Program Lead in the Department of Malignant Hematology at Moffitt Cancer Center in Tampa, FL. He is nationally and internationally recognized for his clinical research in the field of acute leukemias. Learn more about Dr. Lancet, here.
Katherine:
Hello and welcome, I’m Katherine Banwell. Today we’ll discuss the latest news from ASH 2020 and how AML patients can advocate for personalized care. Joining me is Dr. Jeffrey Lancet. Welcome, would you please introduce yourself?
Dr. Lancet:
Hi, sure. My name is Dr. Jeff Lancet. I’m at the Moffitt Cancer Center in Tampa, Florida where I am the Chair of the Malignant Hematology Department. We spend a lot of time treating patients and conducting clinical trials of Acute Myeloid Leukemia.
Katherine:
Dr. Lancet, the American Society of Hematology annual meeting just closed. What are the AML headlines from this year’s meeting?
Dr. Lancet:
Yeah, so as usual AML was a very busy area for clinical presentations this year at the ASH meeting focusing largely on novel and targeted therapies. I don’t believe that there were many practice changing delevelopments, per se, but rather discussions about many promising therapeutic strategies that are still under development and moving forward rapidly largely in the areas of targeted therapy, low intensity therapy, measurable residual disease, and things of that nature.
Katherine:
What does this research news mean for patients?
Dr. Lancet:
Well, I think that there is a lot to be encouraged about and maybe I’ll take the time to review some of the highlights in what was presented with respect to some of the novel therapeutic approaches that many of our patients can look forward to receiving in the not-too-distant future.
So we often talk about targeted therapy instead of, of course, one of the major targets over the years has been that of a mutated FLT3, which is one of the most common mutations in AML.
And at this meeting, we saw several presentations on clinical trials results utilizing Inhibitors of FLT3 with some emphasis on the most recently approved 2nd generation drug called gilteritinib.
There were, I thought, three major presentations focusing on gilteritinib. One was an update on a randomized phase 3 trial comparing gilteritinib plus azacitidine versus azacitidine alone in newly diagnosed unfit for induction chemotherapy patients with FLT3 mutations. Preliminary showing good tolerability and high composite complete response rates in the combination arm.
There was another trial of gilteritinib plus venetoclax in relapsed refractory FLT3 mutated AML and what was interesting was that a very high percentage of patients achieved response with this combination of gilteritinib plus venetoclax. Many of whom were heavily pre-treated previously and many of whom had also got prior FLT3 inhibitor therapy during an earlier stage of the disease, so the combination of gilteritinib plus venetoclax in this more refractory setting was encouraging to see these promising responses.
And then we say some data reporting the effects of gilteritinib in combination with more traditional chemotherapy induction with a couple of studies demonstrating both high complete response rates, as well as high rates of mutation clearance of the FLT3 mutation. So those are very encouraging data that were presented with respect to the FLT3 mutated AML population.
So another very important drug that reached the marketplace for AML recently is a drug called venetoclax, which is an inhibitor of a protein called BCL2. And this drug was recently FDA approved for use in combination with low-intensity chemotherapy drugs such as azacitidine or decitabine. And it seems as though the combination of venetoclax plus one of these hypomethylating agent drugs, azacitidine or decitabine, has resulted in very strong efficacy signals as recently published in the New England Journal of Medicine paper that reported on the results of the Phase 3 trial of venetoclax plus azacitidine.
So that has now become standard of care for older, less fit adults with newly diagnosed AML. The combination of venetoclax plus hypomethylating agent such as azacitidine. And naturally there’s been interest in really kind of taking it several steps further to advance the role of these combinations and to also look at additional drugs in combination with venetoclax plus hypomethylating agent therapy. So, we saw some of that at the ASH meeting this year.
One approach would be to take venetoclax and then to combine it with more intensive chemotherapy for perhaps more fit patients or younger patients that could undergo a more intensive program. So we saw presentations of venetoclax being combined with a drug called CPX-351 which is a novel liposomal formulation of two common chemotherapy drugs that had been approved a few years ago for secondary AML. And we also saw a combination strategy with venetoclax and a regimen known as FLAG-IDA, which is a commonly used induction regimen in Acute Myeloid Leukemia.
I think it’s important to recognize that although these trials they combine venetoclax with more intensive chemotherapy show signs of good efficacy with good response rates, there are definitely signals of increased toxicity, hematologic toxicity, primarily. Which is not really unexpected with venetoclax knowing that it can cause significant lowering of white blood cells, platelets, and hemoglobin.
Then finally, there is a lot of interest in doing these types of combinations with venetoclax in different subsets of AML. And one subset of AML that has been very important recently is that of the IDH-mutated AML population of patients. IDH is a fairly common mutation that occurs in either in the form of IDH1 or IDH2, and there’s about a 15-20% incidence of IDH mutations in AML. Though we do have an inhibitor for both of these types of mutations, ivosidenib for IDH1 and enasidenib for IDH2, but there also appears to be a strong role for venetoclax plus azacitidine in IDH mutated AML. We saw from a series of patients presented by a physician at MD Anderson looking at outcomes with venetoclax plus azacitidine in IDH mutated AML. The response rates were very high when you give HMA plus venetoclax to these patients with IDH mutated AML. But, I think more importantly, is that there were what we call high intra-patient response rates when switching between venetoclax and HMA therapy with IDH inhibitor continued regimen. In other words, a patient would have a good chance of responding to the initial therapy, then, if or when that therapy stops working, having a good effect from the salvage therapy with the other regiment, So if you received initially azacitidine plus venetoclax, and then had a relapse, the IDH inhibitors worked well and vice-versa if have received an IDH inhibitor, then subsequently received HMA/venetoclax at a later time point, that also worked well.
So it’s encouraging to see that you can potentially sequence these drugs and get continued responses along the way that ultimately we think that will help survival and keep patients in a better state of health for longer.
So I just wanted to take a few minutes also and discuss some of the newer more novel therapies that are really hitting or approaching the landscape right now. One of these is called CC-486, also known as oral azacitidine or onureg, and this drug was shown in a recent literature to prolong overall survival in patients who are in first remission from their AML who had received induction chemotherapy. So this drug was used as maintenance therapy after a variable number of consolidation regimens and people who got this onureg or azacitidine drug as maintenance therapy, it resulted in longer survival compared to those who had received placebo. This was presented at last year’s ASH meeting, but this year’s ASH meeting provided an update, a very important update, showing that the overall survival advantage from this drug, this oral azacitidine drug, when used as maintenance was independent of whether a patient had measurable residual disease at the time that they went on to the maintenance therapy. In other words, whether you had MRD (measurable residual disease) or not at the time of the study entry, your responses were still more favorable, your outcomes were more favorable if you received this oral azacitidine drug. So this was FDA approved earlier this year for patients in the maintenance phase of therapy for AML who had got prior induction chemotherapy.
And importantly, this drug was also shown to be able to convert about 25% of patients who were positive for measurable residual disease, to convert them from positive to negative. So even though they were in remission, they had measurable residual disease and this drug in about 25% of the cases converted them from positive to negative. So that’s a very important finding as well.
Another important drug that I think you should keep your eye on is a drug called magrolimab. This is an antibody against a certain type of protein that is present on an immune system cell called the macrophage. And when this magrolimab drug is combined with azacitidine in a recent clinical trial, it was demonstrated very high response rates of over 65%, and in particular in patients with P53 mutation, which is a very bad mutation to have in most cancers including AML. In patients with this high-risk mutation, the combination magrolimab with azacitidine appears to be effective based on the early data that we have with high response rates.
And then finally, I just wanted to make mention of another important area in, not really just AML, but all cancer, and that’s outcomes disparities between different races and ethnic groups. And we saw a very important presentation at the plenary session this year where the authors reported outcomes amongst younger patients with AML who are African American compared with caucasion. And the data clearly indicated a worse overall survival amongst black patients compared to white patients under age 60. And this included patients who are enrolled in clinical trials. So that, it appeared that African American patients had a worse outcome than Causian patients with Acute Myeloid Leukemia. Highlighting the need to better understand various risk factors and other factors that play into these disparate outcomes between our black American population and our white American population, which I think could shed light on additional disease characteristics that many help everybody.
Katherine:
Dr. Lancet, thanks so much for joining us today
Dr. Lancet:
Thank you very much for having me. It was good to be with you.
Katherine:
And thank you to our audience, I’m Katherine Banwell.
Don’t miss an episode and subscribe to PEN’s Empowered! Podcast wherever podcasts are available.
The COVID-19 pandemic has changed so many things about the healthcare industry, including the way patients, providers, and visiting loved ones stay safe. Luckily, since January 2021, hospital admissions due to COVID-19 have decreased by 67%1.
But, for people with cancer who often deal with a weakened immune system and longer-term hospital stays, the threat of COVID is still very real, very scary, and very dangerous. Whether you’re in a long-term care facility or you’re able to be at home with the help of a caretaker, it’s crucial to be vigilant when it comes to keeping yourself safe and social distancing.
Unfortunately, that can lead to issues with your emotional and mental health. Isolation and loneliness have become real problems throughout this pandemic, and isolation has been shown to negatively affect the immune system and can cause mental health issues like depression or anxiety. A lack of interaction can even negatively impact how you respond to treatment in the hospital2.
So, what can you do to socialize with your loved ones while keeping yourself safe and socially distanced?
While the pandemic hasn’t been easy on anyone, there is one silver lining to the fact that it came in 2020 — we have highly advanced technology to help us through it. Thanks to that technology, it’s easier than ever to stay connected virtually to the people you love.
Everything from scheduling daily FaceTime calls with your family members to having larger Zoom gatherings once in a while can help you feel more connected with everyone you care about. While video chatting isn’t the same as being with someone in person, it’s the next best thing. Thankfully, it still allows you to see expressions and feel a sense of “belonging” when you’re talking.
Technology also gives you the power to send text messages, make phone calls, and even find unique ways to connect with loved ones. You can play games together online, chat in messaging apps, or even watch a movie together, thanks to platforms like Teleparty.
By getting creative with your technology use, you can make the most of what you’re given and find unique ways to stay in touch, even when you can’t be together.
Life goes on, whether you’re dealing with an extended hospital stay or you’re in a care facility that is unsafe to leave right now. Unfortunately, that might mean you have to miss out on some major events with your family and friends.
Again, technology comes to the rescue to make sure you can still be a part of big family moments. For example, if you want to go to your young relative’s birthday party but you can’t leave the hospital, consider talking with their parents about a virtual party. If your child is the one fighting cancer and has to stay in the hospital, a virtual party is an even better idea. It allows them to be celebrated while staying safe. Just make sure to:
Other life moments shouldn’t be missed just because you’re in the hospital. Many couples have held “virtual weddings” or vow renewals over the last year, allowing family members and friends to “tune in” to their special event. Encourage your loved ones to utilize technology as much as possible, especially when they have an event planned. It will allow you to remain involved and be a part of everything while staying safe and healthy.
If you’re feeling lost and alone because you can’t be with your loved ones in person, it’s important to know that you’re certainly not alone in how you feel. But, letting stress and anxiety overwhelm you due to loneliness will only make matters worse. Additionally, it can impact your treatment and change your outlook in a negative way.
One of the best things you can try to do for yourself in times of isolation is to reduce your stress levels. Find things that relax you or utilize practices that are known to reduce anxiety, like:
Once you’re better able to manage your stress, don’t be afraid to seek out support in different or unique ways. Talk to your doctors and nurses that you see on a daily basis. Connect with other patients you might regularly see. If you’re in a care facility, take part in different activities that are offered.
You can also take advantage of technology once more by considering teletherapy3. If you’re truly struggling with loneliness and isolation, talking with a mental health professional can help. Telehealth has become increasingly popular throughout the pandemic, and online therapy is no exception. You can connect with a therapist from anywhere in the country without having to leave your bed. Or, consider joining an online support group for cancer patients. It’s a convenient and effective way to manage your mental health and combat feelings of loneliness while understanding that this pandemic won’t last forever. Already, there is a light at the end of the tunnel. Take comfort in knowing that it may not be long before you can see your loved ones face-to-face again. Until then, keep these ideas in mind to stay connected and to fight back against isolation.
Sources
Beau Peters is a creative professional with a lifetime of experience in service and care. As a manager, he’s learned a slew of tricks of the trade that he enjoys sharing with others who have the same passion and dedication that he brings to his work. When he is not writing, he enjoys reading and trying new things.
How to Play an Active Role in Your CLL Treatment Decisions from Patient Empowerment Network on Vimeo.
How can you partner with your healthcare team to feel confident in your CLL decisions? In this webinar replay, Dr. Matthew Davids discusses CLL treatment approaches, developing research and tools for partnering with your healthcare team. Dr. Matthew Davids is the Director of Clinical Research in the Division of Lymphoma at Dana-Farber Cancer Institute.
|
|
|
Katherine:
Hello and welcome. I’m Katherine Banwell, your host for today’s program. Today we’re going to explore the factors that guide CLL treatment decisions, including your role in making those decisions. Before we meet our guest, let’s review a few important details. The reminder email you received about this program contains a link to program materials. If you haven’t already, click that link to access information to follow along during the webinar. And at the end of this program, you will receive a link to a program survey. This will allow you to provide feedback about your experience today, and it will help us plan future webinars.
Finally, before we get into the discussion, please remember that this is not a substitute for seeking medical advice. Refer to your own healthcare team. All right, let’s meet our guest today. Joining me is Dr. Matthew Davids. Dr. Davids, would you please introduce yourself?
Dr. Davids:
Hi, Katherine. Thanks so much for having me. It’s great to be with everyone today. I’m Matt Davids. I’m a CLL-focused physician based at Dana Farber Cancer Institute in Boston, and I’m also an associate professor of medicine at Harvard Medical School. And I get to wear many hats here. First and foremost, I take care of patients, particularly patients with CLL, but I also have some administrative roles. I direct our clinical research program in the lymphoma division. I also run a research laboratory focused on CLL and other lymphoid cancers, and I run about a dozen clinical trials mostly focused on developing new treatment options for patients with CLL.
Katherine:
Wow. Sounds like you’re a busy guy. I’m glad you have the time to join us today.
Dr. Davids:
My pleasure.
Katherine:
Let’s start with a question that’s on the mind of many of our audience members. Is the COVID-19 vaccine safe for CLL patients?
Dr. Davids:
Very timely question. The simple answer is yes. There are now actually three different vaccines that have been granted emergency use authorization by the FDA.
And I would say that so far, we’ve seen clinical trial evidence suggesting these are very safe vaccines in the general population.
Our own experience with our own CLL patients so far has also suggested safety, so I think it’s very important that our CLL patients get vaccinated as soon as they can. I think the bigger concern more than safety is on the efficacy side of the vaccine, meaning how effective are these vaccines going to be for CLL patients? That’s not something that we know yet from the larger clinical trials that have been done. So, those numbers you see quoted, 95 percent protective, that’s in the general populations.
We do worry a bit based on our experience with other vaccines in CLL patients that they may not be quite as effective, but we don’t know that yet. Fortunately, that’s something that we’re studying now, both at our center and in some nationwide efforts, to look for example at the antibody production that CLL patients can make before and after vaccination. I’m hopeful that over the next few months we’ll start to learn about how effective these vaccines are specifically for CLL patients.
We certainly expect they will have some benefit, so that’s why we recommend vaccination for all of our CLL patients. But once patients are vaccinated, it doesn’t give them a free pass to then take their masks off and go back to normal life. Particularly CLL patients I think need to be careful even after vaccination to continue to do social distancing, hand hygiene, and all these things.
Katherine:
Is there one type of vaccine that’s more suited for CLL patients?
Dr. Davids:
Nope. As far as we can tell, all three of the approved vaccines so far are safe and should have some good effects for CLL patients.
There’s no benefit of one versus the others, so the best one to get is the one that’s in your muscle and injected. Whatever you can get access to, that’s the best one for you.
Katherine:
Dr. Davids, have there been any recent developments in CLL treatment and research that patients should know about?
Dr. Davids:
Yeah. We could spend a few hours on this, but I’ll try to summarize it. There’s a lot of exciting developments in the field. and I think we’re going to get into some of the specific treatments in a few minutes, but I would say at a high level obviously, over the last decade the entire field of CLL treatment has been transformed. Whereas we only had chemotherapy-based approaches before, now we have a whole number of different drugs that we call novel agents. And the reason why they’re novel is that they target the CLL cells, but they spare the other cells in the body, so there’s less collateral damage there. What that means is that they have fewer side effects, and they’re more effective, so it’s really a win-win situation for patients.
There’s kind of been two main approaches for this.
One is to start a novel agent drug and to continue it for as long as it’s helping, which fortunately for most patients is a long time, many years. And then, a newer approach is actually to do what’s called time-limited therapy where you start usually at least a couple of these different novel drugs together but hopefully achieve what we call a very deep remission, meaning excellent shrinkage of lymph nodes and improvement of blood counts and bone marrow disease. And by getting these very deep remissions the idea is we can do a finite period of treatment, whether it’s one year or two years, it kind of depends on the regimen. And then, stop therapy and hope that patients can then enjoy many years of remission while off therapy, which can be nice in terms of reducing side effects and costs and all these other things.
So, those are the biggest developments in the field right now, the continuous novel agent therapy and time-limited novel agent therapy. And a lot of the clinical trials that are getting off the ground now are starting to compare these two strategies to figure out really what’s the optimal way to treat CLL patients.
Katherine:
How can patients stay up-do-date on developments like these?
Dr. Davids:
It’s definitely challenging. It’s challenging even for us who are in the field to keep up with things on the academic side. I think for patients, seeking out patient-friendly sources of information on the web are helpful, but sometimes it can be hard to know what’s reliable information on the web. So websites like this and programs like this I think can be very helpful. Another resource that a lot of my patients find helpful is the CLL Society, so www.cllsociety.org. Brian Koffman really curates a lot of the new developments in the field on that website nicely. He interviews a lot of different CLL experts in this short format that can be very digestible for patients. Patient Power is another great website. So, there are a bunch of them out there, and I think those can be a great resource for our patients.
Katherine:
When a person is diagnosed with CLL they have a whole healthcare team. Who’s typically on that team?
Dr. Davids:
It’s definitely a multidisciplinary team.
Usually there’s an oncologist-hematologist who’s leading the team as a physician, but there’s a very large team of other people who are involved, whether it’s an advanced practice person such as a nurse practitioner or a physician’s assistant. They’re often very closely involved with the day-to-day patient care. There’s nurse navigators in some places that can help with getting access to these novel agents and with looking into clinical trial opportunities. There’s pharmacy folks who are very helpful sometimes in checking in on side effects, and advising on dosing, and so forth.
That’s more on the provider side of things. But, of course, the care team really includes the caregivers for the patient, whether it’s family members or friends, who are really a crucial part of this. The field is very complicated, and one of the challenges with COVID recently is that I’ve always invited family members and friends to come to visits with patients, because I do think it’s helpful to have many people listening. And that’s been hard because we’ve had to restrict visitors usually to either no visitors or one visitor because of COVID precautions.
Even if that’s the case, you can still have people dial in by phone or use technologies like FaceTime to try to have them there with you, because I think having that extra set of ears can be helpful as you hear all this information coming at you from your oncologist.
Katherine:
Yeah, absolutely. So, it really does sound like it’s a whole team approach. We have a question from the audience. Linda writes, “I’ve heard that CLL doesn’t need to be treated right away. Is that true?”
Dr. Davids:
That is true for the majority of CLL patients, and it’s actually a very counterintuitive thing. We’re conditioned that if you have cancer that it’s important to be proactive and get rid of it as quickly as possible, the sooner the better, and that is actually not the case in CLL. And we didn’t just take a guess that that’s the best approach. This is actually something that’s been studied in clinical trials. There were several clinical trials launched in the ‘70s and ‘80s looking at an early intervention strategy using a chemotherapy-based approach to see if treating at the time of diagnosis would be better than waiting until patients developed more significant symptoms.
And all of those studies did not show a benefit to early intervention.
Now, more recently those studies have been challenged as somewhat out of date, which is a fair criticism because they used an older chemotherapy drug. And so, there is a newer study now going on in Europe that is looking at early intervention with the drug ibrutinib, which is one of our novel agents for CLL, looking to see if early intervention with ibrutinib, particularly for patients who have a higher risk form of CLL, may be beneficial.
But we have seen some data now already presented from this study that do not show any improvement in how long the patients live by treating with ibrutinib early, and we do see some of the typical side effects that we’re accustomed to seeing with ibrutinib. So, even with the newer data that we’re seeing, we still do not recommend early intervention for patients with CLL.
Katherine:
I’ve heard this term “watch and wait.” What does that mean?
Dr. Davids:
Yeah, it’s not the best term because it’s very passive. That refers to this observation strategy. I like to think of it more as “active surveillance.” It seems more proactive because you’re doing something about it.
You’re really checking the blood counts, you’re getting your physical exam, you’re checking in on symptoms, these sorts of things, and really keeping a close eye on the disease. And that’s the approach that we like to take with our patients to really keep them engaged, making sure they’re staying up-to-date on their screenings for other cancers, making sure they’re getting vaccinations, these sorts of things are all the things we do with active surveillance.
Katherine:
How is someone monitored during this watch-and-wait period?
Dr. Davids:
It varies depending on individual patients. We’ve alluded to the fact that there’s different genetic subgroups of CLL already, so there are some patients that have higher-risk disease. The example of that usually is deletion 17p that people may have heard of on the FISH test. For those patients I usually am seeing them every three months or so, physical exam, checking on their history, checking their bloodwork. But there’s quite a few CLL patients who have lower-risk disease. If they have for example mutated IGHV, if they do not have the 17p for example, those patients may be able to be seen once every six months or so with a similar setup.
I don’t routinely get CAT scans on a regular basis for most patients. Most patients don’t need bone marrow biopsy tests unless they’re starting treatment. So, it’s mostly it’s exam, talking to patients, and checking the bloodwork.
Katherine:
Okay. So, how does CLL progress? When do you know when it’s time to treat?
Dr. Davids:
The stages of CLL involve the progression of the disease. When we first meet patients, often they only have cells circulating in the blood, and that’s called stage 0 disease. It’s one of the few cancers where there’s actually a Stage 0 before even Stage I, and the reason for that is that many patients can go for years on Stage 0 disease. But as the burden of the CLL cells begin to accumulate in the body they can start to collect in their lymph nodes, and the lymph nodes can start to swell up whether it’s in the neck or the armpits or elsewhere. That’s stage I disease.
They can accumulate in the spleen, which is an organ in the abdomen. It’s kind of a big filter for your bloodstream, and as the filter traps more of these lymphocytes the spleen can slowly enlarge over time. That’s stage II disease.
And then finally, the CLL cells can get into the bone marrow, which is like the factory for making your blood cells. And if the factory floor gets all gummed up with CLL cells it can’t make the normal red cells, that’s called anemia. Or it can’t make the normal platelet cells, that’s called thrombocytopenia. And when we start to see those more advanced stages III and IV of CLL, that usually does require treatment. And what the treatment does is it clears out the factory floor and it allows for the normal machinery to make the normal blood cells again. So, that’s one of the more common reasons why treatment is needed is due to anemia and low platelets. Second reason can be if the lymph nodes or spleen get so bulky that they’re uncomfortable or threatening organs internally. We want to treat before that becomes a real threat.
And then, the third thing that usually happens as the disease progresses, patients can develop some symptoms, what we call constitutional symptoms. These can be things like unintentional weight loss, drenching night sweats that are happening on a consistent basis, and those sorts of things. So, if that’s happening at the same time as these other factors are progressing, those would be reasons to treat.
And notice that one thing I did not say is the white blood cell count itself.
That’s a common misconception. Some people think that as the white blood cell count goes higher – and people use all different thresholds, 100, 200 – that by crossing that threshold you need to start treatment. And in fact, that’s not the case. We have many patients whose white blood cell count can get very high but then it can kind of level off and plateau for a period of several years, and as long as they don’t meet those other treatment indications, they don’t need to be treated just based on the white count alone.
Katherine:
Hmm, okay. Well, once it’s time to treat, of course then it’s time to think about treatment options. Let’s walk through the types of treatments that are used today to treat CLL.
Dr. Davids:
As I alluded to before, we historically have had chemotherapy-based approaches to treat CLL. And that was an effective way to temporarily put the disease into remission, but it had a lot of side effects and inevitably the CLL would come back. And the challenge particularly with chemotherapy-based approaches it that when the CLL does come back after chemotherapy, it tends to behave more aggressively and be harder to treat.
So, there have been quite a few studies over the last few years trying to figure out ways that we can avoid using chemotherapy as the first treatment, and this can involve treatments such as monoclonal antibodies. People may have heard of rituximab or a newer drug, obinutuzumab. There are the inhibitors of the B-cell receptor pathway, and this is for example ibrutinib, which targets a protein called BTK, also a newer one called acalabrutinib, which targets BTK. And then, I mentioned at the beginning these fixed-duration therapies that stop after a period of time. Many of those are based on a newer oral drug called venetoclax, which when we give it as a first therapy, we give in combination with that antibody obinutuzumab.
So, a bit of an alphabet soup. I know it gets confusing with all the different treatments, but the good news for CLL patients is, 1.) we have a lot of options, which is great, 2.) we don’t necessarily need to use chemotherapy anymore, and in fact I use it pretty rarely these days. One situation where I do still consider chemotherapy is for younger patients – which in the CLL world is sort of under age 60 or so – if they have very favorable biology to the disease, in particular this mutated IGHV.
That’s a scenario where the older chemotherapy regimen, FCR, can be very effective. It’s a six-month treatment, and we have patients with those molecular characteristics who are now 12, almost 15 years out from their initial six months, and they’re still in a complete remission. So, many of those patients have been functionally cured of their CLL from the six months of treatment. But again, there are some risks to that approach. We worry about other cancers that may be more likely after receiving FCR. We worry about infections, and particularly in the COVID situation, we worry about COVID infection in patients on chemotherapy.
So, it’s been pretty rare that I’ve been using that approach these days. I’ve been opting more for the novel agent-based approaches. So, often now the conversation as an initial therapy comes down to, “Do you prefer more of a continuous treatment strategy with a BTK inhibitor drug like ibrutinib or acalabrutinib, or do you like the idea of a time-limited therapy with one year of venetoclax in combination with obinutuzumab?” And I would say there’s pros and cons to both approaches, and we don’t know which one is the optimal one for CLL patients to start with, but probably I think most patients at some point in their lifetime are going to need one therapy or the other.
So, maybe in the end it doesn’t matter too much which one you start with if you’re going to get both eventually anyway. But we don’t know that yet.
Katherine:
Right. Where do clinical trials fit in with the treatment approaches?
Dr. Davids:
So, clinical trials are really how we’ve made all these advances in CLL over the last decade. It’s how we learn about new treatments. It’s how we learn about how to optimize the treatments that we have. I think sometimes patients have a misconception that clinical trials are a last resort, the idea that you’ve exhausted all the standard options and then you go to a clinical trial as your last hope. But I actually like to kind of turn that on its head and say that clinical trials are actually the first resort, the first best option for patients. Whenever patients can get access to a clinical trial at any stage of their disease, I would really encourage them to consider it.
We have quite a few clinical trials now in the frontline setting, meaning as an initial treatment for CLL, including some that are in development and will open soon. And these are the studies that are going to really help us define what the optimal regimens are. What’s the optimal sequence of these different novel agents?
And in CLL, really, we’re at a point where the research on the disease is so mature that when you’re in a clinical trial you’re either going to be on one regimen that you know you’re getting and you know it’s going to be an effective regimen, or you might be in a comparative trial where you could be randomized to one of two or three different regiments, but you know that each one of those regimens is one that we think is a great regimen. We just don’t know which one is optimal for individual patients. So, this is not a situation where there’s placebo-controlled trials where you don’t know if you’re going to get an active treatment or not. CLL is an area where we design our clinical trials so that all patients are going to be benefiting from cutting-edge approaches.
And so, not all patients have access to trials, and that’s okay. Again, we’re fortunate that we have many good options that can be given locally, but I do encourage patients even if they’re only able to travel to a CLL specialist once to have an initial consultation to think about doing that to get a CLL specialist on your team, so to speak. That way they can identify clinical trial options that may be a good fit, and even if not, they can advise on what the optimal treatment options are to receive locally with your own oncologist.
Katherine:
How do patients find out about these clinical trials?
Dr. Davids:
I do think the best way is through a CLL specialist because certainly they would have a great pulse on the trials, they have available at their own center. They should also have a sense for what trials are available maybe at other centers. Some of that can also be, there’s a great resource through The Leukemia & Lymphoma Society where they can help navigate patients toward specific trials that may be applicable to them.
There’s also a website called clinicaltrials.gov. It can be a little challenging if you’re not familiar with it to navigate the site, but it is actually pretty straightforward. You can put in the disease and look at different options for trials based on different drugs, for example. They’ll list the eligibility criteria for the trial. That’s often I find a way that patients can begin to identify whether they may be a candidate. You can’t tell from the website whether you’re definitely a candidate or not. You really need to partner with an investigator who’s on the trial to learn that, but it certainly can be a good starting point to figure out what’s out there.
Katherine:
With CLL, what are the goals of treatment?
Dr. Davids:
I like to say to patients, “The goals are to make you live longer and live better.” You want to obviously have treatments that prolong life, but you also want to have treatments that are helping with symptoms, and giving patients more energy, and making them feel better, and protecting them from some of the risks of the disease. And so, I think the goals do vary a bit based on the stage of life that patients are at.
I see a lot of patients in their 70s and 80s, and in those patient’s symptom control, having the disease be in a good remission, allowing them to live their life is a good goal. I sometimes see patients in their 40s and 50s, and some of those patients want to be a bit more aggressive and try to do a strategy that will get them a very long-term remission, and even potentially explore potentially curative strategies.
If I have a higher-risk patient with deletion 17p who’s young and fit, and they’ve already had some of the novel treatments, that’s where we start thinking about clinical trials of some of the cellular therapies like CAR-T cells that people may have heard of where you use the T cells from the patient to try to use that as a therapy to kill off the disease. Or even a bone marrow transplant is something that we have used historically in CLL. We don’t use it as often now, but for younger patients with high-risk disease it’s still a consideration to try to achieve a cure of the CLL even though the risks of that are significant.
It sounds like there are several factors to weigh then in making this decision. Lately we’ve been hearing the term “shared decision-making,” which basically means that patients and clinicians collaborate to make healthcare decisions.
And it can help patients take a more active role in their care. What are your thoughts, Dr. Davids, on how best to make this process work?
Dr. Davids:
Yeah, I fully support that model. I think for most patients it’s very helpful to be an important decision maker. Really the patient is the ultimate decision maker to say what they want for their own treatment. And sometimes it’s hard for me to predict what a patient will want for themselves, so I see my role for most patients as providing the information that they need to make the best decision possible for themselves.
I do try to steer patients a bit in the directions that I think they should be thinking. I’m not going to necessarily present a laundry list of things to patients. I’m going to try to narrow it down to what I think are the most reasonable choices for a patient to make.
I feel that’s part of my job. I do still have patients who just say, “Just tell me what to do,” and I respect that, too. Not all patients want to be part of shared decision making, and they just want me to decide, and that’s fine. But I do find that most patients like the idea of having a voice and being the one to decide, and that way I can help to guide them, but ultimately, it’s up to them.
Katherine:
Well, speaking of patients having a voice, are there questions that patients should consider asking when they’re thinking about a proposed treatment plan?
Dr. Davids:
Yeah. I think some of the key ones revolve around basic stuff, but sometimes it’s hard to think of it in the moment. But thinking about, what are the risks of this therapy? What are the specific side effects that are most common? When you look at a package insert or you look at a clinical trial consent form, you’re going to see 100 different side effects listed. I always promise patients, “You won’t have every single side effect that’s listed here, but you may have a couple of them.” And again, my role often is to identify which are the more common side effects that we see and how can those be managed?
And then, I think often you’re just asking simply about what are the potential benefits of this therapy? What are the odds that I’m going to get into remission? How long is this remission likely to last?
And then, something that is often challenging for patients to think about – it can be challenging for me as well – is to think about what’s the next step? So, I think a good question to ask is, “If I choose Therapy A, what happens if I need therapy again in a few years? What are the options at that point?” because we’ve been talking so far mostly about what we call frontline therapy, making that initial choice of treatment. But then, once you get into what we call the relapse setting, a lot of the decision of what to receive at that point depends on what you got as the first therapy. And so, trying to think at least one step ahead as to what the next options are I think can be helpful, certainly for the physicians but also for the patients.
Katherine:
Do you have any advice to help patients speak up when they’re feeling like their voice isn’t being heard?
Dr. Davids:
That’s always a challenging situation, but I encourage patients not to be shy about asking questions.
There’s often an imbalance in terms of the information where the oncologist may know more than the patient about a particular condition. And so, I think reading up and trying to educate yourself as much as you can. Whenever possible, including a family member or friend as part of the visit to also help advocate for you. And then, if you’re not being heard the way that you think you should be, thinking about seeking out another provider who may be able to listen more.
And sometimes that can be again helpful to have a touchpoint with a CLL specialist who may be able to reinforce some of what you’re thinking. If what you’re reading online or seeing online is different from what your oncologist is telling you, that may be a sign that it’s good to get a second opinion and just make sure you’re on the right track.
Katherine:
All really helpful advice, Dr. Davids. Before we end the program, what are your thoughts about the future of CLL treatment and research?
Dr. Davids:
I’m very optimistic about where things are right now. We’ve gotten to this point where we have so many different effective options, so it’s fun for us to now design this next wave of clinical trials to really try to optimize the outcomes for patients.
One area I’m particularly interested in is a concept called MRD, which we haven’t talked about yet, but minimal residual disease is a way to look even at a molecular level for tiny amounts of CLL that may be left behind after treatments. And so, one of the things I’m particularly excited about is the idea eventually of using what we call MRD-guided therapy.
So, we talked before about continuous treatment. We talked about what we call fixed-duration treatment where everyone gets a year or everyone gets two years. MRD-guided therapy would actually allow us to vary the length of therapy depending on how a particular patient responds. So, some patients may need one year of a particular combination, but other patients may need two years. This could be a way to really individualize therapy for particular patients. It’s also a way to monitor patients who are in remission after they’ve stopped therapy.
And so, there’s another wave of trials looking at, should we be intervening early when patients develop recurrence of their MRD rather than waiting until they’re having progression of the disease? There’s still a lot of unanswered questions about these sorts of approaches, but I think it’s going to help us get even better at treating CLL.
All of this is contingent though upon the fact that patients continue to be interested in clinical trials and enrolling in trials so that we can really push the boundaries and learn even more about the disease. So, again, if no other message comes through, it’s really to think about clinical trials as a way to continue to improve outcomes for all patients with CLL. I think it’s a great situation where both the individual patient who’s participating in the trial can stand to benefit, but then also you can really be giving back and helping others.
Katherine:
Dr. Davids, thank you so much for taking the time to join us today.
Dr. Davids:
It’s my pleasure. Thanks so much.
And thank you to all of our partners. If you would like to watch this webinar again, there will be a replay available soon. You’ll receive an email when it’s ready. You’ll receive an email when it’s ready. Don’t forget to take the survey immed – don’t forget to take the survey immediately following this webinar. It will help us as we plan programs for the future. To learn more about CLL and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for joining us.
Health Equity and Myeloproliferative Neoplasms (MPNs) from Patient Empowerment Network on Vimeo.
MPN Network Managers Jeff and Summer share their thoughts on how health equity can impact various MPN patients. They focus on a big factor in equity and MPN patients being location. Unfortunately, not everyone may have access to a specialist due to their geographic location. Summer who is living with myelofibrosis and her care partner Jeff both admit they were lucky to find a specialist in San Diego. Hear Jeff and Summer share The Importance of Finding a Myeloproliferative Neoplasm (MPN) Specialist.
Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org or text EMPOWER to (833)213-6657.
Recently I had the pleasure of taking part in an Ask Me Anything #patientchat about social media (If you missed it you can catch the transcript here). I had forgotten how fast-paced a Twitter chat can be and given that social media is such a huge topic, inevitably I didn’t get to cover everything in that one hour.
One thing I really wanted to share but didn’t get a chance to go into in great detail is how useful it is to have some go-to tools to help you do more with social media. So I’ve put together this list of my own favorite social media apps. Whether you want to edit an image, create custom graphics or schedule your social media posts, there’s a tool here to suit your needs. Best of all, each of the tools listed are free so you can try them out before deciding if you want to upgrade to a paid tool or feature.
A free suite of apps which allow both web and mobile users to create and share visual content such as posts for social media, graphics, web stories, and animated videos. adobe.com/express/create
Anchor is an audio recording app for micro-podcasting, audio broadcasting, Q&As, and more. Features like sound clips and transcriptions make it simple to create audio for social media. Billed as “the easiest way to make a podcast, ever,” it lets you record a high-quality podcast, and distribute it everywhere (including Apple Podcasts) — all in one place. No fancy equipment or podcasting experience necessary, and it’s 100% free!
There is so much you can do with this tool to enhance your visual marketing assets, including creating collages, adding “one-click” photo effects (there are over 300 photo effects and filters to choose from) and an array of graphics (eg speech bubbles). The basic account is free to use and provides users with access to a library of 125 digital effects. https://www.befunky.com
A desktop video creation tool. You can choose from a selection of pre-designed templates or you can build your video from scratch yourself. Biteable hosts a large collection of video clips and images (many of these clips are included with the free plan) to add to your templates. It also provides simple animation and claymation sequences to help you produce engaging explainer videos in just a few hours. Biteable’s free plan allows you to create five projects per month and publish HD-quality video to YouTube and Facebook. https://biteable.com
Buffer is my go-to tool for scheduling my social media updates and with the Chrome extension, you can schedule content easily while browsing. It lets you design specific posting patterns and schedules to optimize your online presence. It’s free to post up to ten updates to one social channel only per day— to post more updates to more channels and to access analytics you will need to upgrade to a paid plan. https://buffer.com
Whether you want a Twitter post or Facebook profile picture, you can create them quickly using Canva’s drag and drop editor. Select from a number of pre-set designs, or create something from scratch. You can also add elements such as custom icons, fonts, charts, animations and illustrations. https://www.canva.com
Easil is a simple, browser-based system with pre-made templates that you can adapt in seconds with simple drag-and-drop tools. It’s especially useful for Instagram and Facebook stories. https://about.easil.com
A proofreading tool which clears your text of all unnecessary copy. Just paste your text into the editor and you’ll get an analysis that highlights lengthy, complex sentences, adverbs, passive voice, and common errors. https://hemingwayapp.com
Infogram is an infographic and data visualization tool. The Basic (free) plan is intended only for non-commercial use, such as personal projects, blogs and presentations, within the limits of fair use. It includes 37 chart templates and allows users to generate up to 10 three-page projects based on their data. https://infogram.com
Life of Pix offers free, high-quality images that are available for personal and commercial use. Each comes with a helpful color palette so you can plan your visuals accordingly. https://www.lifeofpix.com
This is a cool tool that enables you to turn your blog posts into slideshow-type videos in minutes. The free plan includes unlimited videos, access to 10 million video files, and 480p-quality video with the Lumen5 watermark. You can also upload your own logo. Upgrading to the Pro plan ($49/month) lets you remove the Lumen5 branding, upload your own watermark and outro, and more. https://lumen5.com
Pexels provides over 3,800 high-resolution photos, collated from other free image sites — making it one of the largest free image directories. Pexels has also added a large library of stock videos to its site also under the creative commons license. Use the site’s list of popular searches to find the most in-demand stock video. https://www.pexels.com
I use Pocket to batch my reading of online articles. Whenever I find something interesting I save it to Pocket to read when I have more time to focus. You can also share interesting articles directly to Twitter and Facebook or schedule it to Buffer. I like the daily recommended reading list which always brings something new and interesting into my inbox. https://getpocket.com
Quotes Cover turns quotes or short text into images for social media and high resolution images for posters or other print design. It’s so simple to use. Simply enter your quote or text and then choose your preferred design elements, such as font, shadow effect, and color. https://quotescover.com
This is a useful Chrome extension which gives you instant feedback on your hashtag choices as you type them. It checks the hashtags you begin typing in real time and color codes them according to which hashtag will get the most engagement for you. https://ritetag.com
A mobile app that lets you create short animated videos with professionally designed templates. Ripl is integrated with the major social media platforms, so sharing your final video is easy. Once you’ve connected your social profiles to Ripl, you can post directly to Facebook, Facebook groups, YouTube, LinkedIn, and more. You can export your videos if you want to use them outside of your social media platforms. https://www.ripl.com
A super content curation platform that allows you to easily find and share unique, relevant content to your social networks, website or blog. The free version will allow you to monitor a single topic and use the content generated on up to two social media accounts https://www.scoop.it
This tool provides detailed visual analytics on keywords and hashtags, top related hashtags and more. You can use it to export tweets to Excel, track clicks on the links in your tweets, and track the evolution of a particular hashtag over time.
Unsplash gives you access to a bank of 50,000+ free-to-use photos. All photos are licensed under Creative Commons Zero, which means you can copy, modify, distribute and use the photos for free, including commercial purposes, without asking permission from or providing attribution to the photographer or Unsplash. https://unsplash.com
Say goodbye to clunky video software and hello to one-click editing online.
With Veed, you can create and edit amazing videos, add subtitles, animations, audio and more. It works on your Windows or Mac computer, no software download or plugin required.
A mobile application that turns your ideas, quotes, and content into attractive graphics that can be shared on social media.
I feel sure you will find some tools in the list above to help you get more creative with social media and achieve more online.
Here’s to your social media success!
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.
Last week we hosted an “Ask Me Anything (AMA)” Empowered #patientchat with Marie Ennis-O’Connor (@JBBC) where she answered everyone’s pressing questions about social media. The #patientchat community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.
Patient Profile Barry Marcus’ Multiple Myeloma Journey from Patient Empowerment Network on Vimeo.
Empowered patient, Barry Marcus, shares his multiple myeloma journey from searching for a diagnosis to how he is managing his disease today.
In May of 2014, I was signed up to do a charity bicycle ride in Portland for MS with my cousin, her husband, and her son, who has an MS. And about a week before the ride, I started feeling exhausted for no apparent reason, terrible fatigue. All I could really do was lay on the couch and this was completely anomalous for me. I didn’t really have any other symptoms. I didn’t have a cough or a fever, chills, sweating, anything.
After about three or four days I got an appointment with my primary care physician. I went in to see him and he did a few blood tests and the blood tests all came back normal. And he was baffled, he really didn’t understand what was going on. I think he did a test for zika virus, that was going around at the time. I asked him if I could have mononucleosis and he was basically pretty stumped, and really didn’t have any recommendations to go forward.
So, I went home, I got back on the couch, and when I still felt the same way after a week, I called up another appointment and found that he was on vacation. So I went to see one of his colleagues and she did some more blood tests. And at that visit I said to her, “When someone starts feeling like this just out of the blue your mind goes to very dark places”. I said, “Could I have something like leukemia?” and she said, “Oh no”. And that was that. Basically I felt cut adrift and the message was it’s too bad to be you. There’s another version of that that I won’t say.
And then after about two weeks, I started to feel better. The fatigue went away, I got back on my bike, and was able to go to work and be productive. So I just sort of shrugged my shoulders that this is just one of those strange things that doctors aren’t able to explain.
Then, probably about February or March of 2015, I started getting some pains in my neck. If I pulled over a sweatshirt and it caught on my head, I’d get a pretty serious pain in my neck. And as a couple of months pass, this pain got worse, especially when I rode my bike. And I thought well maybe it’s from all this bike riding and having my neck in a strange position.
So I didn’t really follow up at that time. About maybe in June, I went back to my primary care physician and told him about my neck and he sent me for an x-ray at that time. No other imaging, just an x-ray. And he told me that I had minor disc degeneration in my neck and that physical therapy would probably take care of it. So he sent me the physical therapy, and I did physical therapy for a couple of weeks and this pain in my neck did not get any better at all. And then one night I was walking my dog, and I got a, how can I describe it, it was a numb feeling down my left arm. It wasn’t really painful, felt a little electrical maybe, and I knew that wasn’t a good thing.
So I called up the advice nurse, she had an on-call physician call me back. He said you have to go in for an MRI and I’m going to set that up for you in the morning. In the morning, I went for the MRI and when I got out of the tube I went over to the technician who’d done the test and I said what do you see? And his face turned ashen, basically. And he said well I don’t interpret these you know, I just run the machine and you need to see your doctor. It turned out I had a solid tumor in my neck between C4 and C5, about the size of a walnut, and it was pressing on my spinal cord. And I got a call shortly thereafter from my primary care physician who said you need to go see a head and neck specialist and I’ve got that set up for you. And it went in to see him and he said yeah I’m sorry to tell you that you have what appears to me to be multiple myeloma.
So at that stage, I’m sure that I had had this for about a year. And in addition to the tumor in the neck, I had I guess they call them lytic lesions, I had what are essentially smaller tumors in my ribs and on my sternum. They did a PET scan and it’s pretty widespread. And they said the first thing that you need to do is to get radiation therapy to get rid of this tumor in your neck. The head and neck specialist that I saw said that it was very likely that we could get rid of the tumor and he said oh and you’ll be back on your bike in no time.
I felt like that was maybe true or maybe not true, that he was doing his best to encourage me that this wasn’t the end of the world, and of course, I was devastated. I went for radiation therapy for the tumor, I had ten treatments. To make a long story short, the radiation was very successful. I’m going to have to otherwise describe it as it melted the tumor away. It was gone and the next phase was going to be chemotherapy.
I was assigned to an oncologist through my health plan, and I don’t want to be culturally insensitive in talking about this, but his English was not his second… first language. And I had a very hard time understanding him, especially on phone calls where I couldn’t understand him at all. I was feeling pretty down at that point because my primary care physician hadn’t followed up with me, and now I have an oncologist that I’m having problems communicating with, and they provided me with what seemed to me like a cookie cutter – this is the plan that we put everybody through type of chemotherapy.
I wanted to find out much more about it, so I’m very fortunate to have a sister who’s an MD and at the time, before her retirement, she worked at Montefiore Hospital in New York. I called her and she said well I’m good friends with an oncologist here and I want you to talk to him, which I did and his name is Shalom Kalnicki at Montefiore. And he became what we started to call my New York team and I bounce things off of him. The first thing he said was you really do need to get a second opinion and I’m going to set you up at another health provider that I have a lot of confidence in, that I’ve known people there for years. He said I wouldn’t take the chemotherapy that they’re suggesting until you talk to them.
Well that was…I got an appointment for the second opinion, but it was about a month away. That was an agonizing month because I knew I had these lesions, that I had myeloma, and I wanted to jump on it and get immediate treatment, but I didn’t. I waited. I went in and the physician I saw at the second Health Plan, I really liked a lot and she spent a lot of time with me. She looked at some of the other tests that had been done, and basically said yeah your health plan is on the right track, I would go ahead and start it. So I did, but again I frankly felt that if I stayed with my health plan and they were going to kill me.That I was sort of a cog in the wheel, that they basically treated everybody the same way, whether that’s true or not, I don’t know, but that’s how I felt.
And as it happens, August of 2015 and I was turning 65 in September. And it turned out that turning 65 and becoming medicare-eligible, was what they call a qualifying event to change your health plans outside of Open Enrollment. I have to credit CalPERS for that because I went to see them about what my possibilities might be ‘cause I didn’t want to wait till January to get a new Health Plan through Open Enrollment. A woman there was extremely helpful and she told me this information, and so I did change in September I got onto a new health plan that I had been in many years ago that I really liked. What CalPERS had removed from their list of approved providers because of cost, but at that point, they were back. So, I got back in this plan that I’ve been in many years ago, got hooked up with a terrific hematologic oncologist September 1st, and started working with him.
I wound up getting an autologous stem-cell transplant in February of 2016, about 5 years ago, and it produced…I was in the hospital for two weeks. The other health plan that I had been in, if I had a stem-cell transplant through them, they were going to send me 90 miles away and it was an outpatient procedure. I would have had to stay in a rental apartment for 30 days. So, I felt really good about changing health plans. That’s a piece of advice I would give to people is to really do some research and find out in your area where the best providers are, who they are, and see if you can hook up with them.
So after the stem-cell transplant, I had what they called a very good partial response. I was in remission for a year-and-a-half, at which time I didn’t need to be on any maintenance medications and felt great. I got back on the bike doing, you know, up to 50-mile rides and it was good.
But after a year-and-a-half, that was 2017, I relapsed and I had to go back on a chemotherapy regimen that was oral drugs. It was a 3-drug regimen and it kept my myeloma numbers down pretty significantly. Then I would say about a year ago, that regimen stopped working, which is very common, that I came to learn, in myeloma patients that you can go through many many many different treatment regimens during the course of your illness.
So about a year ago, my oncologist switched me to a different regimen that required infusions. So now I’m on IV infusion 3 out of 4 weeks a month and they’re very, very effective on what I would call complete remission. These are Kyprolis, Darzalex, and Dexamethasone. The worst side effect is neuropathy, which is also I’ve learned very common in myeloma treatment. Most people get neuropathy. Mine’s not too bad and it’s mostly in my feet and doesn’t prevent me from riding or walking and doesn’t affect my balance, so I feel, again, pretty fortunate there.
We’re going to stay on that regimen until it too stops working which seems to be inevitable, but I’m very encouraged by lots of the research going on for new myeloma treatments. So I guess, most people know there’s no cure, but they call it manageable and that brings me to the present.
Read more patient stories here.
One of the first things President Biden accomplished since taking office was by signing executive orders that will begin to restore and strengthen Americans’ access to affordable and quality health care. Let’s review what he has done and what that can mean for you, your family, and/or your friends. While you read this article, think of other people who you think could benefit and let them know. Just because most of you understand the need for quality insurance as a result of your cancer, others may not need it now but what if something happens in the future and they don’t have it? No one expects cancer to happen to them, it happens to other people, Right?
The first executive order he signed in regards to health care was to reopen the enrollment period to sign up in the Health Insurance Marketplace (healthcare.gov). Many states that operate their own websites to enroll residents in the healthcare exchange have followed suit and have also opened. This special enrollment lasts from February 15th through May 15th, 2021. After a horrible year of the pandemic and the needs that have arisen as a result, this should be a huge step in bringing affordable healthcare to those who have lost their jobs and find themselves uninsured. The process is very simple and can be done via a phone call or online. And for those who have an illness, this is very comforting because the previous threat to limit access to quality and affordable care because of a preexisting condition is no longer on the table.
In addition, President Biden is directing federal agencies to reconsider rules and other policies that currently limit Americans’ access to health care as well as consider rules and actions that will protect and strengthen that access.
Agencies will be directed to review:
These timely steps could provide additional coverage for millions of uninsured Americans. Some of whom may qualify for free or subsidized health insurance.
As a cancer patient, you realize the cost of healthcare. Having quality care and affordable care can be what allows you to be proactive in your healthcare with your healthcare team to stay on your treatment plan as well as to mitigate and prevent financial toxicity.
While thinking about these opportunities, don’t forget to consider your current insurance plan if you are enrolled in a Medicare Supplement, Medicare Advantage, or employer plan. Review with your healthcare providers to find out if your treatment may change. Then inquire if the costs are going to change as a result of medication changes or treatment facilities? Or perhaps you anticipate retiring before Medicare age or going on disability. Perhaps you are already on disability and will be completing the 2-year mark and can go on Medicare. Now is the time to review your options before the enrollment period expires.
Make sure you have the best possible insurance for your needs that you can afford. Don’t let an opportunity pass you by without investigating its benefits. Take a step to strengthen your health insurance program and possibly lighten your financial load.
Additional information can be found at:
Read the Full PEN-Powered Activity Guide VI
Diahanna Vallentine, BCPA, Financial Empowerment Lead
In 2002 Diahanna and her husband received the news that her husband had MGUS, a precursor to Multiple Myeloma. Upon her husband death in 2013, Diahanna immediately decided to make it her mission to help patients and caregivers empower themselves to speak up and to position themselves as partners in their treatment. Diahanna became a Board-Certified Patient Advocate. She is currently the Financial Myeloma Coach for The Myeloma Crowd Foundation.
Metastatic Breast Cancer Survivor: Taking Control of Your Quality of Life from Patient Empowerment Network on Vimeo.
Stage IV metastatic breast cancer survivor Lesley shares her story of taking control of her care. After her oncologist chose aggressive treatment that would include 8 rounds of chemo, bi-lateral mastectomy, and radiation, she experienced a severe emotional toll along with extreme nausea, fatigue, bone aches, low blood counts, neutropenia, gasping for breath, and then sepsis. After receiving an emotional response when asking for a second opinion, Lesley was able to get an appointment with another oncologist, took control of her own life, and decided to stop treatment until she achieved her goal of climbing Mt. Whitney. And after summiting the mountain, she chose a new treatment with her oncologist based on side effects and quality of life.
Lesley’s advice,
“We have this one life, let’s live it to the best of our ability. These actions are key to staying on your path to empowerment.”
See More From the Best Care No Matter Where You Live Program
My name is Lesley. I live in the Rogue Valley in Southern Oregon. In 2013, I was diagnosed with stage IV metastatic breast cancer.
During a monthly self-check, I noticed a lump in my right breast. I went to the primary care doctor who swiftly ordered a mammogram, ultrasound and a biopsy. Shortly after I met with an oncologist and to my surprise, I was immediately provided with a treatment plan of: 8 rounds of chemo, a bi-lateral mastectomy and radiation.
The side effects of initial treatment literally knocked me off my feet. I was plagued by extreme nausea, fatigue, bone aches, and low blood counts which resulted in daily shots for neutropenia. I would wake up in the middle of the night gasping for breath.
A few weeks into treatment, I was admitted into the hospital with sepsis. The port-a-cath site was infected and my family and I specifically asked for it to be removed. However, my care team was exclusively focused on saving the port-a-cath because of future chemo treatments I would need.
The side effects snowballed which really scared my family. I recall my husband yelling and asking why someone wasn’t doing anything to help me. My situation was dire and we felt no one was listening to the emotional toll of the treatment. Rashes as well as swelling, engulfed my body, and I felt at this point, it was not the cancer that was killing me, it was the treatment plan that the doctors set forth, and my body was rejecting anything and everything put into it, and yet again, the oncologist wanted me to start another round of chemo.
I knew that things had to change. I soon took matters into my own hands. I told my oncologist that I would not go back onto chemo, however, I pushed for additional treatment options. When I told her I was going to get a second opinion, she was upset with me and asked me to meet with her colleague. I told her I would not meet with another oncologist from the same practice.
I was referred to an orthopedic surgeon who was doing my bone biopsy and within one hour of meeting me and hearing my story, he suggested a second opinion doctor. He picked up his cellphone, called her right from the examining room and within a matter of time had already set up an appointment for me. I later had a successful breast sparing lumpectomy instead of a mastectomy. My new care team was extremely thorough, but also respectful of me and the quality of life I desired.
With a grip on my treatment path, I decided to start taking my life back and I began hiking. My goal for the year was to train for 8 months and summit Mt. Whitney. I met with my oncologist and told her I wanted to stop treatment until after my big climb. We did stop treatment and shortly after, I summited Mt. Whitney.
Several weeks later, I met with my oncologist and started another regimen, of which I chose as well with guidance from my oncologist. I progressed in 2018, again I also decided which treatment option I wanted to do, based on my quality of life, and the side effects I was willing to live with.
My advice to other metastatic breast cancer patients:
Since my diagnosis, I’ve made it my mission to advocate for my metastatic breast cancer community. Patient advocacy is my full time job. I share my story to inspire and empower others to take control of one’s care.
My best advice is to find and build a care team that sees you not as a number in a queue of patients, but as the person whose life is represented in that medical file. We have this one life, let’s live it to the best of our ability.
These actions are key to staying on your path to empowerment.
Living With a Cancer Diagnosis Amid the Pandemic from Patient Empowerment Network on Vimeo.
Empowered patients, Honora Miller and Barry Marcus, share what it has been like living through a pandemic while being immunocompromised because of their multiple myeloma diagnosis.
Barry Marcus:
I have really never hesitated from telling people that I have cancer and I’m immunocompromised and it wouldn’t be a good idea for me to get together with them and people understand that. They know what kind of times were in so I feel like I haven’t really put myself at risk, I have gone out to dinner a few times at restaurants that have outdoor seating, which is now pretty common in my area, and I’m also very fortunate to have gotten both doses of the Pfizer vaccine, so the interesting part of that is going to be whether I’m going to change my behavior because of that, I know I will continue to wear a mask, always when I go outside even though I’m now vaccinated.
Honora Miller:
Yeah, I have found it interesting actually, among a group of my friends, we meet via Zoom every Wednesday, and it’s been interesting to see over the course of the year that we’re now in this. They certainly know that I am compromised, but they forget, and so, of course, I’ve been directed very clearly that I need to do as much sheltering in place as possible to not go grocery shopping, to have things delivered, or my husband often goes grocery shopping and to really…you know, I can’t go to the gym. The gym has been opened a couple of times during this process, it opens and closes, but I can’t go to the gym, I need to do my exercise differently, I can’t go swimming, so there have definitely been changes and I have taken extra care because I’ve really been told in no uncertain terms that I need to. I’m a little anxious about when my son, who I have a high school student, he’s been having remote school when he goes back to school, if I haven’t been vaccinated yet, I’ve been told that I will need to quarantine from him, so we’re hoping that everything will coincide so that I don’t need to do that.
It requires ongoing planning, and I do have friends who have just spent ski week up and Tahoe, and they invited me to come and I can’t come. It’s not something I can do now, and I feel clear in my mind that this is a period of time where I need to not do things so that I can tell the tale later on, and what this experience was like Once COVID is over ’cause it will be.
How Can You Overcome Hurdles in Your Health Journey from Patient Empowerment Network on Vimeo.
Empowered myeloma patients, Honora Miller and Barry Marcus, discuss the biggest hurdle they faced in their health journey and the importance of finding a healthcare team you are comfortable with.
Honora Miller:
Hi, I’m Honora Miller, it’s my pleasure to be the Myeloma Network Manager for Patient Empowerment Network and I look forward to speaking with Barry Marcus.
Barry Marcus:
I’m Barry Marcus. I am 70 years old; I was diagnosed with myeloma in 2015. I am a retired Geologist, I worked for the sacrament of County Environmental Management Department for 20 years, and I’ve been retired since 2012. I think my biggest hurdle was finding an oncologist that I was very comfortable with that didn’t hesitate to give me all the information that I wanted, and it took me a while. When I first had my diagnosis, I was in a health plan where I had a very hard time understanding my oncologist, I didn’t have a lot of confidence in him, and I was able — because I had just turned 65 to get on Medicare and change health plans outside of the open enrollment process, and I was fortunate enough to find an oncologist that I now have complete confidence in, and I’ve been seeing him for four or five years now, and I wouldn’t want anyone else.
Honora Miller:
That’s great to hear that you have found someone you’re comfortable with. That makes such a difference. I found that for myself personally, the greatest challenge was to actually get diagnosed, I was comfortable with my medical providers, yet we didn’t know what was going on with me, and it was through their perseverance in tolerating my ongoing questions, they were really helpful in continuing to do testing, because we had no idea I had mild anemia that persisted and I had fatigue, and they had no idea what that was, and I was fortunate enough that I felt confident in those medical professionals that when I did get a diagnosis, through a lot of perseverance I felt like, okay, we got to roll. The data showed that I needed to move quickly. I can’t imagine what I would have done in that moment if I didn’t feel comfortable with them.
