Last week we hosted a “Ask Me Anything (AMA) Part 2” #patientchat with special guest, Marie Ennis-O’Connor (@JBBC). The #patientchat community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.
Everyone living with cancer understands the dangers of their disease. But did you know that infections cause, or are involved in, about 60% of all deaths for cancer patients? This is because many cancers, and many cancer therapies, can weaken your immune system. As you enter each phase of treatment, your doctors will prepare you for what to expect, but here are 7 things every patient with cancer — and those around them — need to know about infections.
Almost 20 million people are diagnosed with cancer each year, and nearly all cancer patients are likely to be immunocompromised at some point (or points) of their disease course. Hematologic cancers like leukemia, lymphoma, or multiple myeloma can weaken the immune system themselves, and certain solid cancers are related to diseases that weaken the immune system, like AIDS.
But even if your disease doesn’t impact your immune system, the treatment might. Most patients undergo treatments with chemotherapies, which attack the fast-dividing cells of the cancer, but also bone marrow that manufactures immune cells. Similarly, common treatments for blood cancers involve destroying and replacing bone marrow to reboot the immune system. Your doctor will inform you if you enter a treatment phase that requires extra caution and vigilance.
Patients with cancer may have unique challenges from infections that people with fully functioning immune systems may not. The most obvious issue is your body can’t mount its usual defense, leaving you unable to fight off what would be otherwise routine illnesses. Also, you are susceptible to certain types of pathogens, like certain fungal infections and hospital-acquired infections, that a healthy immune system would block early.
Importantly, your body’s common tools against infection — fever, inflammation, increases in certain easily-detected immune cells — are often the telltale signs of an infection. If they don’t occur normally, it’s easier to miss red flags of early disease, when treatment is often easier.
The best defense against infection is to not get one. Living through the pandemic has likely made you familiar with some common tools and strategies to minimize exposure to infectious diseases: wear the right mask, wash your hands frequently, and avoid contact with sick people and crowds. Vaccines can be important armor against infections, especially if you are not yet immunocompromised — but may become so later in treatment. (Your doctor can guide you on which vaccines to update.)
If you are already immunocompromised, it’s important for those around you with healthy immune systems to get vaccinated. They become your first line of defense.
If your white blood cell counts are low, you are considered neutropenic. Neutropenic patients should avoid hiking, where you risk exposure to molds growing in natural environment that might be dangerous. Similarly, avoid construction sites, which tend to aerosolize dirt — increasing the spread of dangerous pathogens.
Sometimes getting sick may be unavoidable. Infections may present differently in immunocompromised patients, depending on the type of infection, immune status, and how far a disease has progressed. But there are signs to watch for:
This is the number one red flag, though it can be hard to interpret. When patients with low white blood cell counts have a fever it’s called febrile neutropenia. Because of the danger in developing a blood infection that escalates to life-threatening sepsis, patients will often be placed on broad-spectrum antibiotics immediately when presenting with a fever, though more accurate treatment. Fever, however, can also be a sign of cancer progression.
Things like shortness of breath or difficulty breathing can be signs of lung infection and pneumonia.
As with many symptoms, pain in the chest or abdomen are not necessarily signs of infection, but need to be investigated in immunocompromised patients
Weight loss is associated with serious infections like tuberculosis, which may be slow to show symptoms in patients with compromised immune systems.
Another symptom that can have many causes.
Don’t let the signs of infection catch you off-guard. The point at which you’ll be most at risk of infection is often predictable — for example, when white blood cell counts have dropped just after chemotherapy. This can help you prepare and stay vigilant.
Typically, doctors will advise blood cancer patients with signs of infection not to go to an emergency room — mixing with a general population of acutely ill patients could expose you to other dangerous pathogens.
But that doesn’t mean to ignore symptoms or avoid care — if you wait until you experience drops in blood pressure or spiking fever, the outcomes could be worse. Instead, many oncologists recommend you call your cancer clinic, where your potential infection can be addressed by your doctors in a controlled setting. It’s understandable that patients will not want to be admitted too early, but early treatment tends to give better results. Make a plan with your specialists before you wind up in harm’s way. Speak with your family members so they know how to help you if you are in need. And know where you need to go.
The most common infections for immunocompromised patients are from opportunistic pathogens. This can include hospital-acquired infections, which is why most specialists will help you try to avoid the hospital if possible.
But sometimes it’s unavoidable. In these cases, you will most likely be transferred in from your cancer center or — after a phone call to your specialist — directly from home, avoiding the ER. Often, this means you will be in a dedicated cancer ward, intensive care, or otherwise segregated from people with normal immune systems. In any event, health care providers will be wearing masks and other protective gear to prevent exposing you to new pathogens. Hospitals also have additional safety protection like HEPA air filters and rigorous protocols to prevent contamination.
Clinicians will often use empiric antimicrobial therapy for cancer patients showing signs of infection. Under this approach, doctors begin the process of testing for the specific pathogen, but simultaneously start the patient on a broad-spectrum antimicrobial therapy while waiting for the results of testing. If testing can identify a specific cause, the doctors can switch to a more directed therapy that is appropriate for the specific illness.
If they can’t, there is still a chance the signs of infection will resolve, sometimes without ever finding a specific diagnosis. Those patients may have endured additional suffering, remained at elevated risk for new infections in a hospital setting, or encouraged antimicrobial resistance by treating a pathogen with an inappropriate treatment course. In the worst-case scenario, failure to identify the right pathogen may lead to worse outcomes for the patients.
The good news is that diagnostic testing is improving, and there are novel, highly accurate tools to help doctors get their patients on the most appropriate therapeutic course faster. This means directed treatment for more patients, earlier in the course of disease, for better outcomes with less antimicrobial resistance.
Sarah Park, MD, is a pediatric infectious diseases physician at Kapi’olani Medical Center for Women & Children in Hawaii. She is also an assistant clinical professor in the department of pediatrics at the University of Hawaii John A. Burns School of Medicine, and Medical Director of Medical Affairs at Karius Inc.
What Should You Ask Your Doctor About Myeloma Testing? from Patient Empowerment Network on Vimeo.
Testing and test results may affect your myeloma care and treatment. Dr. Nina Shah, a myeloma expert, shares key questions to ask your doctor about testing and reviews testing techniques for myeloma.
Dr. Nina Shah is Associate Professor of Medicine in the Fepartment of Medicine at the University of California San Francisco (UCSF) and treats patients at the Hematology and Blood and Marrow Transplant Clinic at UCSF Helen Diller Family Comprehensive Cancer Center. Learn more about Dr. Shah, here.
|
|
|
Katherine Banwell:
If a patient wants testing beyond the standard, what should they be asking their doctors for?
Dr. Shah:
Well, thankfully a lot of these tests can be done as a standard. We actually have some approved testing for it. So, the most important thing is to ask the doctor at all. For example, the patient may ask, 1.) “When will my next bone marrow biopsy be?” and 2.) “When I get that bone marrow biopsy, will you be looking at cytogenetics and FISH?” and 3.) “When you get the bone marrow biopsy, will you be also looking for minimal residual disease?” And finally, “What technique will you use to look for that minimal residual disease?” There are different ones that the patients might find useful to know about.
Katherine Banwell:
What are some of the different techniques?
Dr. Shah:
There are a variety of ways that we can look for minimal residual disease. One of them is called flow cytometry. What that is is you send all the cells that are in the bone marrow through a chute, and in that chute you can sort of detect one or however many cells that are – that have a specific characteristic on their cell surface.
You think of it as a bunch of balls with lollipops sticking out of it. And based on the characteristics of those lollipops, you can tell if there are any plasma cells or myeloma cells. Another thing we do with minimal residual disease, another technique, is called the next-gen sequencing or NGS.
And for that, we need to know the specific DNA sequence that is very personal to your myeloma cells. So, your particular plasma cell or the cancer cell will have a sort of sequence, a specific sequence that can be identified when you’re first diagnosed. And if you have access to that tissue, that can be sent off to the company, and they use that as sort of a template or a measure – an individual identification. And then, they scan the subsequent bone marrow samples against that to see if there’s any sequence that matches that original one, and that’s the way you can detect one in a million positive cells, if there are any.
Understanding Your Role in Myeloma Treatment Decisions from Patient Empowerment Network on Vimeo.
Many factors are considered when choosing a myeloma treatment. Dr. Nina Shah, a myeloma expert, reviews how treatment decisions are made and the patient’s role in deciding on an approach.
Dr. Nina Shah is Associate Professor of Medicine in the Department of Medicine at the University of California San Francisco (UCSF) and treats patients at the Hematology and Blood and Marrow Transplant Clinic at UCSF Helen Diller Family Comprehensive Cancer Center. Learn more about Dr. Shah, here.
|
|
What Key Questions Should Myeloma Patients Ask About Treatment? |
|
Katherine Banwell:
What are the main factors that you take into consideration before a treatment approach is decided on?
Dr. Shah:
We always have to remember that treating a patient is also treating a person. So, it’s not just about what the disease the patient has but who the patient is. And so, we take into consideration goals that the patient as well as other health factors that may take – be taken into consideration. For example, the patient may have high blood pressure or a heart condition. But regarding the disease, we really also take into consideration what the profile of the disease is, maybe how much disease burden the patient has and some genetic factors that may impact our decision-making.
Katherine Banwell:
What is the patient’s role in treatment decisions?
Dr. Shah:
The patient should always be the center of the decision-making. I think that’s a really important thing for us to remember because ultimately, it’s the patient who has to make the decision and has to withstand the treatment. Alongside of that there may be some caregivers as well, but the patient has to, 1.) understand the disease, and 2.) understand the treatment options. So, it’s best if the patient has as much information as possible.
Katherine Banwell:
Are treatment considerations different for patients with relapsed disease?
Dr. Shah:
For patients with relapsed disease, there’s a lot of things to consider that may not have been true when the patient was first diagnosed. For example, you always have to think of what maybe the patient had as a prior – excuse me, as a prior treatment, and also how the patient tolerated it.
As we enter the final days of Breast Cancer Awareness Month, I am remembering a time over a decade ago, when immersed in a sea of pink ribbons I felt part of something. I had been diagnosed with breast cancer as the month of September turned into October and surrounded by Breast Cancer Awareness Month activities I felt supported as a newly diagnosed patient.
But as the last days of October faded and the pink ribbon wearers began to disappear, I was left wearing the everyday reality of a disease that I still felt ill-equipped to bear. I still feel a sense of sadness today at all that I had yet to learn and go through on my journey with breast cancer. I often wonder how much easier that path might have been had I known then what I know now.
One thing I know for sure is that those of us who have traveled this road can ease the way for others who are just starting out. In this spirit, I reached out to the breast cancer community to ask them what advice they would give to a newly diagnosed person with breast cancer. You will find their responses below alongside some of my own.
Cancer research advocate and 20+ year breast cancer survivor, Lisa DeFerrari [1] emphasizes the important role of support. “Don’t be afraid to reach out for support early on,” she advises. “I realize that many of us are very independent-minded – I certainly am,” she says, “but breast cancer and learning how to deal with it are complicated and there are lots of great resources out there. Reaching out for information and support can also be a way to recover from the sense of loss of control that often comes with a cancer diagnosis.”
To this cancer blogger, Megan-Claire Chase [2] adds, “let go of your pride. Don’t be afraid to start a GoFundMe. You’d be amazed by people’s generosity to pay your medical bills and regular bills.”
“Ask questions and push for information,” recommends Julia [3] creator of #BCCWW breast cancer Twitter chat. “For people living with long term conditions and disabilities before breast cancer it is valid to worry about the consequences of cancer and the risks of treatment on your wider health,” she adds. “Don’t let anyone invalidate those concerns with ‘but cancer’ – it’s your body and health, it’s you that has to bear the possible risks and potential consequences of both. So make sure they’re centered to the degree you need them to be.”
Diagnosed with late-stage invasive lobular breast cancer in 2015, Siobhan Freeney [4] who campaigns for essential breast screening and early detection of breast cancer for women with dense breasts, urges women to ask about their breast density even after a diagnosis, as this is important information because It will influence their surveillance imaging. Siobhan highlights the fact that “many women diagnosed with breast cancer don’t know anything about dense breasts and associated risk factors.
Although you may be reeling from the news of a cancer diagnosis, it’s important that you learn as much as you can about your diagnosis and what treatment options are available. Siobhan advises taking time to absorb what’s just happened and then take notes at meetings and consultations. “Find out as much as you can about your particular cancer and speak up,” she recommends. “Ask for MRI, PET, CT any baseline scans available to you. Find reliable, evidence-based information.”
Jo Taylor [5] founder of After Breast Cancer Diagnosis stresses the need to be your own advocate. “Be your own advocate – try to understand what type of breast cancer it is and ask questions and research it. Always ask for copies of scans and details. Then find your community who support you and you can support them.”
Megan-Claire offers this advice for those who are working full time at the time of diagnosis “Talk with your manager or direct supervisor and work out a plan where you can work from home (if not already due to COVID) and work out a schedule for coverage when your chemo treatment starts.” She also offers two practical tips when undergoing chemotherapy: “I suggest getting your chemo on Fridays so you’ll have the weekend to rest,” and “ask your oncologist for a temporary handicap sign. It helped me immensely due to deep fatigue.”
As Megan-Claire mentions, fatigue is an issue that cancer patients face. We all know what it’s like to feel tired — physically, mentally, and emotionally, but usually, after some relaxation and a good night’s sleep, we are ready to take on the world again. When you have cancer, though, rest often isn’t enough. You experience persistent, whole-body exhaustion. Even after adequate sleep or rest, you will still feel tired and unable to do the normal, everyday activities you did before with ease. A lot of cancer patients don’t report fatigue to their doctors because they think that nothing can be done about it. In fact, there are things that can be done to alleviate the debilitating effects of cancer-related fatigue. If left untreated, fatigue may lead to depression and profoundly diminish your quality of life, so it’s important that you speak to your doctor if fatigue is an issue for you [6].
It is amazing how quickly you forget what you thought and felt in those early days of diagnosis and treatment. Megan-Claire recommends keeping a journal to note down your thoughts. “It could just be a sentence or two and either save them on your laptop or in a journal,” she recommends. “There was a lot I forgot about and was glad I had my little notes from the start of treatment to look back on.”
One of the things you might like to journal about is the feelings of loss and grief you will experience with a cancer diagnosis. While many people think of grief only as a reaction to bereavement, we can feel grief after any kind of loss. Some of our losses are tangible, for example losing our hair, and some are more intangible, such as the loss of trust in our bodies. Coping with the losses associated with cancer is challenging. Grief brings many emotions with it. Patients, as well as caregivers and family members, may go through emotions of anger, denial, and sadness [7].
This final piece of advice comes from Betsy Mullen [8]. “Respect the diagnosis; question the prognosis,” she says. “I was diagnosed with a grade III triple-negative breast cancer and given 2-3 years to live at best. That was 29 years ago.”
Being diagnosed with cancer is a life-changing event. Know that you will go through many emotions and experiences on the roller-coaster ride of diagnosis, treatment and beyond. Each person will experience the journey in their own way. While there’s no right or way to go through the experience, it’s important as mentioned above that you find support. Reach out at each step of the way and find someone who understands what you are going through and can offer you the support you need.
[1] Lisa DeFerrari Finding Great Support After a Cancer Diagnosis
[2] Megan-Claire Chase Life On The Cancer Train
[3] BCCWW https://twitter.com/bccww
[4] Siobhan Freeney https://beingdense.com
[5] Jo Taylor abcdiagnosis.co.uk
[6] How To Cope With Cancer-Related Fatigue
[7] Grief, Loss, and the Cancer Experience
[8] Betsy Mullen https://twitter.com/betsymullen
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.
From PEN-Powered Activity Guide VIII: Supporting Your Support System
It seems every day we’re being bombarded with ways to stay fit. there is always a new fitness program or a new types of fitness equipment that’s supposed to give us the best bodies we can have. But with those who are dealing with a chronic illness, fitness takes on a different meaning. Not only do we need to feel our best physically, we also must be prepared in every aspect of our lives with your sight always set on your best possible treatment and your continuum of care.
I thought this would be a great time to review four of the most impactful areas you can review, reallocate, and make the changes that are most appropriate for your specific circumstance.
A good way to look at it is, in the fall we make sure we perform maintenance checkups or in our furnaces. We prepare our gardens and lawns for the upcoming spring, we check the exterior for homes for energy efficiency and we do checkups on our cars to prepare them for the winter season.
Unfortunately, few of us take the time to review the foundations of our financial lives that in fact dictate our ability to remain on treatment plans and meet all of our financial obligation. It is my hope, that everyone takes the opportunity to review at least these four areas that I’m covering in this article before the end of the year.
First, the big one for a lot of us, Medicare. As you know the Medicare season is almost upon us. And there are changes as there are every year. If you are already a Medicare enrollee, this open enrollment period gives you the opportunity to make changes if needed. And if you have been enrolled for 12 months or less and you have a Medicare Advantage plan you even have the opportunity to replace it with a Supplemental plan perhaps with guarantee issue If you qualify. Here may be a wait period but you may not be able to get in at a later date and the coverage may be better for you.
Also, if you have an HMO plan you may be able to switch to a PPO for more plan flexibility. Review your Prescription formulary if there have been changes to your treatment. The worst thing you can do is to not review your Medicare options as there are changes every year and more plans may be available to you and the cost may be better as well. Don’t assume that the cheaper the premium the better off you are. Review your total cost. That includes the premium, co-pays, deductibles, coinsurance, and the cost of your meds as well.
Secondly, review your life insurance plan. Many people aren’t aware of the benefits that insurance offers. Such as, accelerated benefit riders in the event you need access to some cash or the options of taking a loan from your policy.
Additionally, if you are still employed, on your next enrollment period with your employer see if you can add or increase your life insurance amounts. Even if you plan to retire or terminate your employment next year or at a later date the cost to take life insurance with your employer may be the only place you qualify without medical underwriting and it’s much cheaper. Also, see if your employer offer a supplemental life insurance that you can enroll in that may be portable at your termination from employment.
Review your credit to make sure there isn’t anything on it that’s incorrect. If you anticipate making a big purchase this will really affect your interest rate.
Third, as a financial advisor, I found a lot of clients would not look at their monthly statements to see how their retirement accounts such as 401k’s and investment accounts were doing. You are doing yourself a huge favor if you keep up with these no matter if the market is up or down. Speak to your financial advisor to make sure you’re taking advantage of growth, income producing, and tax efficient opportunities.
And finally, don’t assume you won’t qualify for financial assistance. The cost of treatment is expensive and probably always be. Talk to your doctor or social worker to help you uncover sources that can help you pay for co-pay, deductibles, coinsurance and other needs.
Do this before you find yourself in a financial crisis. Be proactive with understanding your illness and the anticipated change in treatments that may be available for you.
Instead of waiting for spring cleaning, take the time to do a financial review now. Go into the new year in the best possible position you can. And then, like getting a check-up on your car, do the same for your financial future every year. After all, you are worth more than a car!!
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.
The Benefits of Having a Role in Your DLBCL Treatment Decisions from Patient Empowerment Network on Vimeo.
Diffuse large B-cell lymphoma (DLBCL) patients have a vital role in their treatment decisions. Expert Dr. Loretta Nastoupil shares advice for patients on how to advocate for their best care, the value of a second opinion, and credible resources to boost knowledge about DLBCL.
Diffuse large B-cell lymphoma (DLBCL) patients have a vital role in their treatment decisions. Expert Dr. Loretta Nastoupil shares advice for patients on how to advocate for their best care, the value of a second opinion, and credible resources to boost knowledge about DLBCL.
See More From The Pro-Active DLBCL Patient Toolkit
|
|
|
Katherine:
But what do you feel is the patient’s role in this whole decision?
Dr. Nastoupil:
So, I’ve actually been a patient myself, and I have mixed feelings about it. I think oftentimes as an oncologist, we share decision-making when we don’t know the exact path forward, meaning if there’s something controversial or you have more than one option, generally, we kind of put out all the information to the patient, and we want you to be part of that decision-making.
And I think that’s important because we’re all humans, and we all want liberties. And we want our patient rights to be acknowledged and respected. And that’s important. I think sometimes though that also burdens patients with making decisions when they may feel they don’t have all of the information to make an informed decision.
But your role as the patient is you know your body better than anyone. And, generally, if there’s something that just doesn’t fit well or sit well with you, be vocal about it. So, I’ve been in a situation where I felt like I had to speak up a few times, and not that I have all the answers. And I am an oncologist. So, I generally have more insight than others.
But, generally, I was right in that, again, I think we know our own bodies. And when you feel that something is being missed or maybe not given the time and attention it deserves, speak up. You also have a role in making sure that the diagnosis is correct.
So, I generally advise all patients because everything hinges on the diagnosis in lymphoma, more so than the staging, more so than sometimes even the treatment itself.
Getting a second opinion can be incredibly valuable because you have another pathologist that will lay eyes on this biopsy. And lymphoma is rare. So, a second opinion can be incredibly valuable, and that’s usually something driven by a patient more so than an oncologist. Though some oncologists – and I would say the majority – are open to an opinion because they too would like information or confirmation that they’re on the right path.
Katherine:
Certainly.
Dr. Nastoupil:
The other thing that I think patients can have role is exploring what trial options are out there and available to them. I think that is sometimes a tough subject to discuss. Clinical trials are not only for patients who have failed all the standard treatments.
And it’s usually not an option of hospice versus a clinical trial. That’s absolutely an inappropriate time to consider a clinical trial. And, generally, there are trials at any point in a patient’s journey where there is some controversy as to the best path forward.
Again, I’ve been discussing the last 40 years of trying to improve upon R-CHOP is because 60 percent of patients were cured, but 40 percent were not. There is always a scenario where we could do better. And, generally, the only way we will improve upon outcomes is to conduct important rational clinical trials.
So, sometimes, it’s as simple as reaching out, participating in programs such as this, reaching out to The Lymphoma & Leukemia Society or the Lymphoma Research Foundation to just explore what are your trial options. They may not be appropriate for you right now, but at least understanding where there is an opportunity to participate in a trial is worth exploring.
Katherine:
Dr. Nastoupil, I’m wondering how patients can feel confident in speaking up and becoming a partner in their care?
Dr. Nastoupil:
So, it’s important to recognize, and I reflect on this all the time. Generally, once patients have been rendered a diagnosis of cancer, that’s a life-altering event. And even if I spend a lot of time trying to reassure patients that outcomes for lymphoma patients are very good, generally we’re aiming for cure, that’s not true for everyone.
And you can’t help but be concerned that you will succumb to this disease or that the toxicity of therapy is going to be life-altering and impact your quality of life in such a way that it’s no longer the life that you were happy to live.
And so, I recognize that we are partners in this. My job is to choose the most effective therapy that will try and accomplish the goals we set out to achieve. However, sometimes, oncologists make assumptions about what the goal of a given patient is.
We’re assuming that longevity or living is the most important goal. Whereas sometimes, people might care more about the quality of life, or they may need more reassurances about what the options are or their realistic outcomes with therapy. Because, again, I’ve mentioned before, oncologists are generally eternal optimists. We tend to sugarcoat things a little bit.
So, it’s important for patients to recognize that they will have a shared decision responsibility, meaning oftentimes we will provide all the information that we have access to in terms of a given treatment.
What is the likelihood of success, what is the potential risk in terms of toxicity, and what we’re leaning towards one therapy over another, particularly if you have more than one option.
But, ultimately, we need patients to share with us what their goals are in terms of outcome of that treatment so that we can then potentially refine our treatment selection. So, again, being informed, participating in programs like this so that you understand what makes one lymphoma different from another. Why would one oncologist offer one treatment and another discuss something else?
So, understanding what the different lymphomas are, how they might be approached differently, what the new therapies are. I struggle to keep up with just the lymphoma literature and changes. I can’t imagine what it must be like for an oncologist that treats every cancer type. So, again, understanding that new drugs are approved almost every couple of months in lymphoma may provide an opportunity for patients to share new information with their oncologists as well.
Last week we hosted a “Let’s Talk Burnout: Patients and Care Partners” #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.
What Questions Should Patients Ask About MPN Test Results? from Patient Empowerment Network on Vimeo.
What should you know about your MPN test results? Dr. Mascarenhas discusses how test results are used, including the importance of genetic mutations and risk stratification when analyzing results.
Dr. John Mascarenhas is Associate Professor of Medicine at the Icahn School of Medicine at Mount Sinai (ISMMS) and the Director of the Adult Leukemia Program and Leader of Clinical Investigation within the Myeloproliferative Disorders Program at Mount Sinai. Learn more about Dr. Mascarenhas, here.
|
|
|
Katherine Banwell:
Some patients may not know if they’ve received these important tests. So, what key questions should they ask their physician about testing?
Dr. Mascarenhas:
Well, I think it’s important that the patients feel empowered to understand sort of where the field is and what key questions you would ask a physician, hematologist who’s taking care of you. So, I think all patients should be aware of their diagnosis, the name of the diagnosis, the subtype, but also do they have any of the key driving mutations, the JAK2 mutation, the calreticulin mutation, the MPL mutation, and that’s usually done off of a bone marrow biopsy sample, but it can be done off peripheral blood. And, they may not always know that it’s done. So, I think having a discussion with the position to understand there are criteria that exist called the World Health Organization criteria that are updated frequently and should set a standard throughout the world of how you diagnose and establish these diagnoses.
So, I think it’s important for physicians to be able to convey to the patients with confidence, “We follow these criteria and you have these criteria and we’ve done this testing that shows that you have these mutations.” And not just regurgitate what they found, but help them understand and navigate with that means, which again, I will point out that sometimes we don’t know. But, I think it’s important for physicians to convey sometimes that some of the findings that they may see, for example, patients look on portals these days and they can look at their labs and stuff like that. And, we don’t always have a terrific answer or an informed answer for everything that we get back. And, we will potentially in 10 years from now, but sometimes at the moment, we don’t. But, I think a discussion about the meaning of the labs that are obtained is probably good for the patient to understand what’s being done.
Katherine Ba:nwell:
Absolutely. It sounds like each person’s situation is unique and should be considered before making any treatment choices. Can you talk about how the results of these tests may affect prognosis and treatment?
Dr. Mascarenhas:
So, we do have risk stratification systems that we use for essential thrombocythemia, polycythemia vera, and myelofibrosis. I’ll talk about myelofibrosis because that’s probably a little bit more of a complex and sophisticated model. It’s also changing, and we update it frequently. And, these models are imperfect, so I always warn patients to not put all of their money in one basket when we talk about risk stratification. They broadly help us understand where a patient is in their disease course. So, for example, in myelofibrosis, historically, the DIPSS, the Dynamic International Prognostic Scoring System is used, which considered five clinical variables that have been shown to be independently prognostic. So, at age over 65, the presence of blasts or circulating immature cells in the peripheral blood, anemia, hemoglobin less than 10, symptoms, fevers, night sweats, weight loss or a high white count over 25,000, you those points up.
And patients can do this online. There are calculators that you can calculate your DIPSS score. And, you’ll see that there are four different risk groups that range from low risk to high risk, and they are associated with median survivals. We now know that mutations influence those, have influence on prognosis. So, there are a group of high molecular risk mutations like ASXL1, SRSF2, IDH1/2. So, there are mutations that also have prognostic significance, and we incorporate them into the decision-making.
And, essentially, and this is where I think patients have to be very careful, physicians have to be very careful with conveying this. With these risk models whether they are clinical variable risk models or these integrated molecular risk models, each category is associated with a median survival, that’s based on retrospective studies. But that doesn’t tell the patient specifically what they should expect in terms of survival. And, I always fear that patients, when they look at these things, or even physicians when they convey them that they may inadvertently misrepresent or convey what those really mean.
And, I think the purpose of those risk stratifications is really to help guide a risk adapted treatment approach that’s reasonable and is weighted for benefit to risk of the disease. So, for example, if you have advanced disease with a high-risk score of intermediate to or higher, bone marrow transplant in certain patients may be a warranted therapy to consider. So, they really help inform treatment.
Patient involvement in every facet of healthcare is incredibly important in creating better patient outcomes. I believe this is especially true in the rare and chronic disease communities, including cancer. One facet that is particularly key for patient engagement is the development of drugs produced through the clinical trial process.
Clinical trials can cost millions to fund with the goal of producing a product(s) that may or may not help it’s targeted disease population. Thousands of patients rely on these trials to find a cure and/or enhance their quality of life by providing symptoms of relief. Yet many don’t know about them, and if they do, it’s a struggle to find them, much less enroll in one.
As a person who takes on many roles, including a rare disease patient and a cancer patient, as well as someone who has translated clinical trial protocols for a lay audience and now recruits for those trials, I have seen firsthand the barriers that patients face when it comes to potentially life-saving treatments. Below is what I have encountered and what we as healthcare professionals can do about it:
While most patients know of and about clinical trials, they are often not aware that they may be an option for treatment. Healthcare is a business, and because of this, doctors feel like they’re “losing” their patients (aka revenue) when they refer their patients. However, most healthcare organizations, facilities, etc. boast that they’re focused on patient-centered care. Patient-centered care means focusing on the needs of each patient and providing the best treatment possible even if it comes from another source.
Clinical trials are often discussed using medical jargon that is too confusing for patients to understand, especially the eligibility criteria. Patients should not be expected to learn a new language to understand the treatment process. Rather, they need resources that will help them understand if they qualify, what will happen in the trial, and how long they’ll be in the trial for.
A patient who had participated in a clinical trial once told me that the investigators focused mainly on whether the drug that she was receiving was treating her condition and never considered her quality of life. Quality of life should automatically be included as a measurable outcome in each clinical trial even if it’s not the main purpose.
Patient centricity, as written above, has become a buzzword in the healthcare industry. The drug company, AstraZeneca, defines it best: “Putting the patient first in an open and sustained engagement of the patient to respectfully and compassionately achieve the best outcome for that patient and their family.” Are we really doing this if patients aren’t involved in the drug and clinical trial development processes?
How can patients invest themselves, and the government and pharma invest in patients, to potentially get a better ROI?:
Find more information in this PDF created by Global Genes
Carly Flumer is a young woman who was diagnosed with stage I papillary thyroid cancer at the age of 27. She recently received her Master’s degree from Boston University in Health Communication and received her Bachelor’s from George Mason University in Health Administration and Policy. While being diagnosed with the “C” word at such a young age was a surprise, as it would be to anyone, she found strength, support, and inspiration in sharing her cancer journey on social media. As a result of her health outcome, she looks to advocate for other cancer patients through education, research, and health literacy.
Leading up to the NORD’s Rare Diseases and Orphan Products Breakthrough Summit on October 18 – 19, we interviewed NORD’s Director of Policy, Heidi Ross.
My name is Heidi Ross, and I am the Director of Policy at the National Organization for Rare Disorders (NORD). My job at NORD involves working at the state and federal level to ensure laws are in place so patients have access to affordable, quality health care coverage, including necessary health care providers, diagnostics, and treatments. I love getting to work with policy makers and advocates to ensure our health care system is meeting the needs of rare disease patients.
According to the National Institutes of Health (NIH), there are an estimated 7,000 rare diseases and 2/3 of rare diseases are thought to be directly caused by changes in genes or chromosomes. Additionally, it takes on average 5-7 years for rare disease patients to get an accurate diagnosis. There are a lot of different types of genetic tests. Some tests only look for variations in one gene, but other genetic tests are more complex and can look at the entire genome for changes. For some rare disease patients genetic testing can be a useful tool for obtaining an accurate diagnosis and can assist health care providers in determining an appropriate treatment plan.
Patients should consult with their health care provider to determine if genetic testing would be helpful in the diagnosis of their condition.
The costs associated with genetic testing vary significantly, as does the out-of-pocket expenses for patients, depending on the type of genetic testing being conducted and the type of health care program or insurance a patient utilizes. However, the costs associated with a long diagnostic odyssey can also be significant for patients and the broader health care system, as patients suffer though unnecessary or unhelpful tests, treatments, or hospitalizations. The uncertainty can also take a significant toll on the mental health of patients and their loved ones.
This break out session is focused on Project Baby Bear, which was a $2 million pilot project to provide rapid whole genome testing to ill newborns eligible for care under California’s Medicaid program, Medi-Cal. We have an amazing panel, including the state legislator, Assemblyman Brian Maienschein, who championed the creation of Project Baby Bear, Dr. David Dimmock from Rady Children’s Hospital, which was one of five hospitals who participated in the pilot, and Ms. Christy Moore from Blue Shield of California, which has expanded coverage of rapid whole genome sequencing for their plan participants.
According to the final report on Project Baby Bear:
“The pilot project to expand access to rapid whole genome sequencing provided diagnoses for 76 babies, led to a change in the management of 55 babies that resulted in fewer hospital days, fewer procedures or new therapies, and diagnosed 35 rare conditions that occur in less than one in one million births. In addition, the project reduced healthcare costs and downstream spending, primarily by empowering doctors to eliminate unnecessary procedures and discharge babies sooner, resulting in an estimated $2.5 million in health care savings.
For patients specifically, access to the results of rapid whole genome sequencing through Project Baby Bear led to 513 fewer days in the hospital, 11 fewer major surgeries and 16 fewer invasive diagnostic tests.”
As a result of Project Baby Bear, the insurer Blue Shield of California is now providing coverage for rapid and ultra-rapid sequencing of babies and children who have life-threatening and unexplained medical conditions. Furthermore, this year, California’s budget included significant funding for a whole genome sequencing benefit for Medi-Cal eligible children. Attend the session on Monday, October 18 to learn more about this incredible pilot program.
The variety of panels and the expertise of the various speakers makes for a compelling Summit, even in a virtual setting. It is always exciting to learn more about the research and development of new diagnostics and treatments for rare diseases, because I know the hope that they give to many rare disease patients. The Summit is also a great chance to learn about rare disease challenges and opportunities and what they mean for public policy, both now and in the future. Registration is still open! We hope to see you next week.
We all have acknowledged that the silver lining of the COVID-19 pandemic has been the use of telehealth services. You should have a choice on who you feel comfortable with on your healthcare team and now telemedicine grants that choice to many populations.
Newly diagnosed breast cancer patients living in a rural area or farther from major academic health centers are now able to obtain second opinions from experts without travel and with minimal exposure to COVID-19. The quality of a televisit does not differ from an in-person visit. Although you’ll be without a physical exam, your provider can still prescribe medications and send you for various tests/blood work.
If you are unsure that your chief complaint requires a telehealth visit versus an in-person visit, ask. You can avoid an unnecessary trip or multiple appointments.
Will your appointment be via phone call, or will there be video? Is there an application you should download, or is it accessible via your web browser? Is this televisit covered by your insurance? Don’t be afraid to overprepare. In the end, it saves time and benefits everyone involved in the appointment.
Telemedicine may seem less formal causing us to not be as prepared as we would for an in-person visit. Write your questions and concerns down. Just because you’re connecting virtually does not make your appointment time any less important.
At first thought, you may see no reason why someone should accompany you to your telehealth visit; however, you still need that support. It’s okay to have someone in the room or even on camera with you. Your provider will not mind and will encourage it. Many times, emotions are high in the exam room, and we hear what our providers are saying, but we’re not really listening. Having support at your telehealth appointment ensures that you won’t be overwhelmed with trying to remember every detail. The best part is that with telehealth your loved one can join from almost anywhere in the world!
Telehealth extends beyond appointments. It also includes patient portals. If you have a quick question for any member of your healthcare team, more than likely there is a system that you can use to quickly contact someone. Your patient portal can also give you easy access to results of blood tests, urinalysis, and more.
Telehealth services are likely here to stay. As you enter survivorship of your breast cancer care, annual visits can be maintained via telehealth. While in survivorship, you’ll most likely no longer be seeing multiple doctors on a regular basis for your care. With telehealth, you are able to maintain your health with one provider during survivorship without taking time off of work, finding childcare and/or sacrificing travel plans. As telehealth services continue to develop and to improve, the future of breast cancer care will steadily become more accessible.
Last week we hosted a “Patient Advocacy in Drug Development: What Role Does it Play?” #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.
Empowered AML Patient: Ask the AML Expert from Patient Empowerment Network on Vimeo.
For acute myeloid leukemia (AML) patients, how can they get the best care no matter location? Watch as expert Dr. Catherine Lai and AML patient Sasha Tanori discuss advancements in AML detection and treatments, the use of remote monitoring, questions to ask if you suspect you have AML, how AML can vary by age, and clinical trials access for optimal care.
See More from Best AML Care No Matter Where You Live
What Treatments Are on the Horizon for Acute Myeloid Leukemia Patients? |
|
|
Sasha Tanori:
I want to start off by saying, thank you so much for joining me, Dr. Lai, I greatly appreciate it.
Dr. Catherine Lai:
Thank you for having me.
Sasha Tanori:
Dr. Lai, early on before my diagnosis, AML, many of my doctors I saw dismissed my symptoms and attributed them to me being plus-sized. Can you share with us how detecting AML has evolved over the last several years?
Dr. Catherine Lai:
Yes, and I’m sorry to hear that, but what I would say about the diagnosis is that how we diagnose patients with AML, unfortunately, hasn’t changed significantly in the sense that we still have to rely on our standard techniques with the bone marrow biopsy. But what I would say is that the technology for how we risk-stratify patients and subsequently treat patients has improved because we have a better understanding of the molecular characteristics of AML now, and so it has helped us in terms of being able to identify more targeted treatments, where patients are more likely to respond and help us with both our short-term and our long-term plan.
Sasha Tanori:
Right, got it. My next question is, can you speak on how monitoring and treating AML has changed during the pandemic?
Dr. Catherine Lai:
Yeah, so unfortunately, as you experience it, you spent your induction in the hospital for several weeks, and when you’re able to be in the hospital with support, either from friends or from family, it makes the experience much, much easier and with COVID, especially at the height of the pandemic, we weren’t allowed our hospital. And I know several of my colleagues as well, the hospitals weren’t allowing any visitors and that put a lot of stress on the patient, on family members, on the staff, the nurses, the physicians, really the whole care team. Just because we were needing to spend extra time to make sure that everybody was updated, so either if we couldn’t do it on FaceTime, having to make sure other phone calls later, which is just…it is what it is. And we made the best of the situation. Currently, we are allowing to have a limited visitor policy, which is helpful. I think the other thing that has really changed is what we consider when we’re starting treatment, if patients obviously need induction chemotherapy and need to be in the hospital, we don’t change the recommendation based on that, but if there are patients who…
Dr. Catherine Lai:
There are options whether or not the patient is done inpatient versus outpatient, I think that that’s a huge consideration in terms of quality of life and how we manage those patients.
Sasha Tanori:
Can you speak to the advances and treatment options for high-risk AML patients?
Dr. Catherine Lai:
Yes, so fortunately, we have made a lot of progress in the AML space, that is one thing that is really exciting, I would say. Since 2017, there have been nine FDA approvals for AML, and prior to 2017, and we have been using the same chemotherapy for the last 40 years. Now, that’s not for lack of trying. There are many leukemia physicians who have been working at this for the duration of their careers, but AML just is very heterogeneous, and it’s very smart. It’s smarter than we are, and it’s constantly changing, and so that has made it challenging in terms of being able to treat it. So, there are newer treatment options, both modifications to traditional chemotherapy as well as other targeted therapies that have improved the landscape for AML and high-risk AML in particular. That’s awesome.
Sasha Tanori:
Dr. Lai, I think another factor that played a role in my diagnosis is somewhat being delayed is my age, I was 24 at the time, what are some questions others who suspect they have AML should ask to rule out the diagnosis?
Dr. Catherine Lai:
So, Sasha, that’s a really good question. And what I would say is that, as you are aware, the median age of AML diagnosis is 68, so not to say that we don’t have young patients…I have plenty of young patients, but it doesn’t come to…it’s not a common thing to think about in younger patients right off the bat, the other thing that contributes to that is also AML compared to other cancers is an uncommon cancer. There are only 25,000 cases of newly diagnosed in the United States per year because it’s not as common in younger patients and because it’s not that common…doctors often want to rule out other simple things rather than just going straight to a cancer diagnosis though, unfortunately, that can lead to some delays, what I would say in young patients who are healthy is that they shouldn’t have low blood counts that can’t be explained for other reasons. So, I think having prompt attention in terms of if their blood counts are abnormal, to really understanding why they’re abnormal, and those are things that can be easily work up, and if all those things are rolled out, then you’re talking about doing a bone marrow biopsy I don’t like to do procedures for unnecessary reasons, but it’s one of those things that you can also…
I mean, I think if you have a physician who is the astute and is thinking about that, that you can…you can get to a diagnosis pretty quickly, I mean AML is a diagnosis in the name acute. It comes on acutely, so that means days to week, so I suspect you are probably feeling very well and over a very short prior of time felt very unwell, and you’re very in tune to your body, and that is very important because patients are smarter than we give them credit for, and so being persistent and knowing that something is wrong goes a long way. Again, I’m sorry that you had to deal with that, and I’m glad that they finally made the right diagnosis, but I think just awareness and education. While it is an uncommon disease, I think having a larger burden and strain that happen on younger patients because you haven’t been working for the majority of your life, and it takes a huge toll on what your potential is, both as a person, but economically and all sorts of things. So it’s a huge problem
Sasha Tanori:
Does prognosis of AML vary by age?
Dr. Catherine Lai:
So, yes and no. So let me answer that in two steps, so it does in the sense that older patients are more likely to have more comorbidities, so more medical problems, and so therefore have a higher likelihood of having complications, and also as patients get older, they acquire more mutations and more abnormality, so those molecular abnormalities, and so therefore, older patients then are become more challenging to treat as well. What I would say though, is that we typically risk-stratify based on molecular factors, so the different mutation than somebody has and the age and the comorbidities don’t necessarily play into that role of stratification, so for example, whether or not you’re receiving a transplant or not…age is a factor, if you’re kind of in that little risk category, the intermediate risk category, the other thing I would say is that for young patients, they are able to tolerate because many don’t have medical problems, so they are able to tolerate treatment better, so when I’m talking about numbers and likelihood of response and overall survival, those…all those mediums assume that somebody is in their mid-60s, and so I adjust the numbers because for younger patients that those numbers are likely higher…
Because they’re less likely to have complications.
Sasha Tanori:
Right. I had many medical professionals that participated early on in my care. Can you speak on the role of the multidisciplinary care team that plays in AML care?
Dr. Catherine Lai:
Yeah, this is…this is an excellent question. I would say that treating leukemia is a team sport, everybody has their role, and it’s not just one person, and this is part of why I love treating leukemia patients, is that we’re able to engage multiple players, everybody is good at their particular thing, and so one analogy is that…we’re kind of like a baseball team, is that you want everybody to be able to do their own…have their own position. What a standard for our center is that we have the leukemia physician, there’s a specific leukemia nurse, we engage our social worker very early on, and also our cancer nutritionists and physical therapist and occupational therapist so we all work together at different parts of the treatment journey to make sure the patient is getting everything that they need and the whole person is being taken care of.
Sasha Tanori:
Right. AML patients, just like anyone else, want to live and live a very long time. Are AML patients at risk for secondary cancers, and are there any studies that speak on this?
Dr. Catherine Lai:
Yeah, so I would say everything has its risk and benefits at the time of diagnosis, you need the chemotherapy in order to get into remission, and then if you need the transplant, whether or not you’re getting radiation and then further some chemotherapy before the transplant, so that’s not without risks, so especially in a young patient, for example, in your particular case, you’re at risk for secondary treatment-related MDS and other bone marrow-related disorders that could occur, most patients who are in their 60s who, if they live long enough would be at risk, but most of those patients will die of something else before you have that opportunity. As a young patient, the other thing to be aware of, especially with, given that you’ve had transplant, is that the increased risk of cardiovascular effects, as well as making sure in patients who have had your whole-body radiation, other effects in terms of their thyroid, lung function, and then screening earlier for other cancers. So in terms of looking at studies, we know that these risks are slightly increased and that monitoring starts a lot sooner, especially in young patients. So I think just being aware of what you need to do.
Dr. Catherine Lai:
We also have a survivorship clinic, which I think is really important to help understand, you know what your risks are, because once your leukemia is in remission, we don’t want you to develop other medical problems, so it’s important just for patients to be educated so that they know how to take care of their body at each stage of their…again, of their journey.
Sasha Tanori:
Alrighty, after getting a bone marrow transplant three years later, I’m still dealing with graft-versus-host disease or GVHD, but there are other obstacles that I’m also facing. Does GVHD ever truly go away or is it something that I’m going to have to learn to live with?
Dr. Catherine Lai:
Yeah, I wish I had a magic answer for you. Our data is that it gives us guidance for each patient, but then also each patient as an individual and how they respond to different medications, and the nuances of that is…it can be different. So what I would say is that there are patients who you have chronic GVHD for years and it can eventually go away, and in some patients, they deal with it for a lifetime, you’re young enough, and I’m hopeful enough that at some point it will improve and get better. So I would be cautiously optimistic that things will improve.
Sasha Tanori:
I’m…I’m trying my best.
Dr. Catherine Lai:
It’s hard.
Sasha Tanori:
Yes, it’s very hard. Yeah, my care team suggested a clinical trial for a new drug focusing on improving my lung function, fortunately, my lungs improved on their own. Dr. Lai, not every AML patient is offered clinical trial as a care option, what advice you have for AML patients who are seeking clinical trial and what’s the best way to locate one?
Dr. Catherine Lai:
Yeah, so this is an area, a huge area of unmet need, I would say in general, across all oncology trials, and I think less than 10 percent of the patient population is on trials, there’s a lot of stigmas around clinical trials and are you getting… Are you getting a drug that we don’t know what’s gonna work, am I being…am I being tested? In oncology, I would say for the most part, we try to make trials where you’re being measured to the standard, so you’re getting the standard plus, or we’re trying not to…just in terms of doing what’s best for the patient, in general, I don’t offer trials to patients where I don’t think that there’s scientifically a rationale for those drugs, but to answer your question, the best place to look is on clinicaltrials.gov. That’s cumbersome. If you don’t know what you’re looking for, I can give you a lot of unnecessary information. There are a lot of other resources out there, The Leukemia & Lymphoma Society is a great resource. I know that they have online or people that you can talk to in terms of helping you direct specific clinical trials, I know depending on where you live in the country, there are other local New Chapters, oncology chapters that we have that can help patients find…
And have access to clinical trials, and then I think the biggest thing is just if a patient is with the community oncologist, having enough education to say, can I have a referral to an academic institution where they can ask those questions and get that information, and local community oncologists are fantastic, but they see everything, they see breast cancer, they see one cancer where the academic centers were specialized where all I see is leukemia and MDS kind of acute leukemias. So it’s just a different set of knowledge.
Sasha Tanori:
Okay, my next question is, I’ve had one telemedicine visit via my online portal, is the role of the telemedicine in AML care becoming more important?
Dr. Catherine Lai:
Yes, so what I would say…so this is my personal opinion, but in my opinion, that medicine compared to other industries tends to be a little bit farther behind, we’re not as quick to adapt the newest technology where COVID has helped, I think is at least in my practices, help utilize telehealth in the sense that there was a period of time where I was seeing fewer patients and then it really picked up because especially for patients who have a local oncologist but want a second opinion, the telehealth really offers that they don’t have to travel two hours to come see me to get that opinion. So what I would say is that it cannot replace the physical exam, it can’t replace a face-to-face discussion when you’re really talking about new diagnosis and therapy, because I really do think that that should be in person, but where… I have found that it’s been really helpful is if I’ve had an initial visit with the patient, and they either have a local oncologist, so I’m just checking in with them periodically, or if it’s to review results, say they’ve had a bone marrow biopsy and it’s…
They’re further along in their treatment, or if they’re just reviewing imaging results or something where I don’t necessarily need to see them have a physical exam and I’ve seen them recently, and so I do everything else that’s going on, but can I check in to review a specific part of information. I think that telehealth would have a role, and I hope it continues to have a role.
Sasha Tanori:
Yeah, yeah definitely, I agree. It’s really helpful in that sort of way, so you don’t have to actually leave the comfort of her home for something that’s not really super serious. You know?
Dr. Catherine Lai:
Exactly, yeah, I think what happens is patients do tend to…what I’ve noticed patients do is under-report, so it’s for… Not for infrequent visits, so for patients who are followed on a regular basis, it does allow there to be some ease of burden in terms of how we treat our patients.
Sasha Tanori:
Right. So a silent side effect that people facing cancer don’t always talk about is mental health. Are there any treatments or coping methods that you recommend for patients and care partners?
Dr. Catherine Lai:
Yeah, so I would say to get social work involved early on, I think there’s also…it’s silent, ’cause there’s a lot of stigma around it, is that is something that we should be talking about or not talking about or…I can handle it, that sort of thing, so I introduce our social worker very early to know that she is a resource for the patients, no matter how big or how small, just to try to get them used to that idea. What I would also say is just talking with as many people as possible as I’m sure you realize that the network and the community is small and everybody is willing to help each other out, so once you put yourself out there, you’ll realize that there are other resources out there, and you’re not alone in this journey, and what your cancer team offers you is different than what other patients who have gone through exactly what you’ve gone through can offer, and so I know that there are other resources out there in terms of societies that connect other patients who have the same diagnosis, so I would say it’s really just about education and talking and knowing that it’s okay to talk about your diagnosis and no matter what format that is, or if it’s a little bit now and a little bit later, and also just normalizing it, in the sense of the feelings you have are valid and normal, and if you don’t have those feelings is actually when I get worried about patients because you’re supposed to have certain reactions, you were a young patient and you were diagnosed with cancer.
That’s not a trivial thing. And we’re just…we’re all here to help you and help the patients go through everything…
Sasha Tanori:
So for my last question is the future bright in AML treatment and can you speak about any exciting studies that you are working on, that AML patients and their families should stay tuned for?
Dr. Catherine Lai:
Yes, so I am excited. I am excited to say that I think in my lifetime, I will be a part of AML change and we have already seen it. I have mentors who are in their 60s, who have used the same therapies, they use them for the entirety of their career. And so as I mentioned, we only have your 9 FDA approvals. I think there are more coming… I think what I would like to mention is I think the use of immunotherapy, bone marrow transplant is the original immunotherapy, but as you know, there are many risks and benefits and complications, and so how we manipulate the immune system or how we use drugs to help manipulate the immune system, I think it’s a work in progress. It has been more successful in other cancers, not as successful in AML yet, but I think we will get there. The other thing would be, is how… We look at minimal residual disease. So, as you know, but for everybody else, we consider a complete remission is less than anything less than 5 percent blast or 5 percent leukemia cells but we know that anything greater than zero is bad, and you have more than zero, the disease will come back at some point.
So looking to how we monitor, going back to those molecular technologies and how we’re monitoring for residual disease so that we can detect disease faster, so I think really the concept of detection and prevention will come into a huge role because also if we can detect the disease relapse sooner, we’re treating less disease and then there’s less side effects and less toxicity, and then I think the last thing would be health outcomes of a lot of what we’ve been talking about just in terms of the whole picture and how we can better treat these patients I also think there’s a huge role for looking at each individual person and their age and their medical problems, and they’re a physiologic age as opposed to their chronological age and how we can best treat the patient so they can have the best outcome.
Sasha Tanori:
All right, well, thank you so much, Dr. Lai, for taking the time to speak with me and for all you’ve done for the AML community and our patient’s families, everyone.
Dr. Catherine Lai:
Thank you, thank you so much for having me. I’ve really appreciated you putting yourself out there… Thank you.
