Tag Archive for: hematologist

Acute Myeloid Leukemia Care | Who Are the Essential Team Members?

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Acute Myeloid Leukemia Care | Who Are the Essential Team Members? from Patient Empowerment Network on Vimeo.

Acute myeloid leukemia (AML) care is not just monitored by an oncologist or hematologist – there’s an entire medical team. Dr. Jacqueline Garcia, an oncologist and AML researcher, shares an overview of the various members of the healthcare team and the role they play in overall care.

Dr. Jacqueline Garcia is an oncologist and AML researcher at the Dana-Farber Cancer Institute. Learn more about Dr. Garcia.

See More from Thrive AML

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Understanding AML Treatment Categories

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 How Can You Thrive With AML Advice for Navigating Care.

Transcript:

Katherine Banwell:

Typically, there are a number of team members to care for a patient. Who is part of an AML healthcare team?  

Dr. Jacqueline Garcia:

Absolutely. We definitely cannot work on our own. Our team is very large, and it’s because these patients require a lot of support. At a bare minimum, a healthcare team will include at least one physician or an oncologist. The AML healthcare team might also include a second oncologist – that could be a bone marrow transplant doctor.  

Other members that are very critical include having a mid-leveler available that’s a physician assistant or a nurse practitioner. Often, an oncologist who runs a busy practice, who takes care of patients that could be very sick, like AML, they work in partnership with often very talented physician assistants and nurse practitioners. I know I do.  

In addition to that, I’m at an academic center so I’m super fortunate. I have really amazing and very smart hematology oncology fellows and residents that also follow to learn how to take care of patients. But we also, in the background, that patients don’t see – we have a pharmacist that helps us with making sure that drugs are prescribed correctly. They often call the patients with oral therapies to follow up. We have financial resource teams to help patients, to link them to LLS for support for bills that might come up, or transportation, or linking them up to other services that could help to defray or reduce costs.  

So, the healthcare team is quite extensive. But in terms of those that are patient-facing, it’s primarily the MDM that are mid-leveler. Some teams operate also with a nurse or a nurse care coordinator. That’s pretty common, too. And that person helps to not only schedule but also to answer pages or phone calls from patients if the medical team is not doing that.  

Katherine Banwell:

What about a social worker or psychologist? 

Dr. Jacqueline Garcia:

Oh. Yes. Yes. So, absolutely. So, every patient can be offered, if needed, access to an inpatient or outpatient social worker. Often, if my patients are admitted we have them see a social worker because that’s fairly seamless. Otherwise, for outpatient, if we identify any particular needs or there’s an interest, we’ll link them up with a social worker. This is the same that goes for physical therapy, or nutritionists, or those other ancillary services that can be really critical when patients are getting started.  

My Waldenström Macroglobulinemia, Miracle Number Three

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Dear Fellow Cancer Patient,

As I believe in universal love for ALL, I’m reaching out to you, whether we have met or not, to invite you to join me in embracing the concept of medical miracles no matter what kind of cancer you have.

I do so because in January 2023 I experienced my third medical miracle since being diagnosed with Waldenström macroglobulinemia (WM) in August 2012, an extremely rare and currently incurable lymphoma.

The mission of Patient Empowerment Network (PEN) to support and educate patients with all cancers has an exceptional impact. It is an honor to cooperate with PEN, and my dream is to bring you hope through my own medical successes through the past 10 years. (*Please see footnote for a brief history of my story.)

It is my tremendous good fortune to be in the constant care of my world-renowned WM specialists/hematologists at the Bing Center for Waldenström’s Macroglobulinemia, Dana-Farber Cancer Institute/Harvard Medical School in Boston, Mass. since March 2013. Also, my oncologist at Virginia Cancer Specialists who has extremely high credentials in hematological malignancies, diagnosed me in 2012, and treated me immediately with what was then the flagship chemotherapy for WM.

In September 2022, I experienced the most aggressive outbreak ever of my Waldenström. A lymph node was so enlarged, I discovered it myself. One week later, my feet were unbelievably swollen, which I discovered when I couldn’t put my shoes on. I immediately reached out to the Bing Center’s Director, Dr. Steven Treon. Within the same hour, he called my Virginia oncologist and recommended a PET scan and biopsy for me. The next morning at 10 am, less than 24 hours later, I was examined in Virginia by my oncologist, and he ordered both tests on the spot.

The results were extremely concerning and put fear in my heart again as is the case with any cancer diagnosis. Enlarged lymph nodes were very widespread throughout my body, and there was increased activity in my entire bone marrow throughout my skeleton from head to toe.

My two Bing Center for WM doctors’ recommendation of Benda-R [bendamustine (Treanda) and rituximab (Rituxan)], for chemotherapy was agreed to by all upon consultation with my Virginia oncologist.

For three months, I couldn’t walk outside of my house and only went to medical appointments with my oncologist every week and chemotherapy treatments for two days each month. Tony, my husband, had to drive me there and take me by wheelchair down the hall to his office. I was also very frail due to losing 15 pounds, making my weight 90 pounds.

During this very challenging time, my brother Mike, a two-time survivor of non-Hodgkin lymphoma (NHL), supported me constantly and even called me from Egypt and Panama on his cruises there, as he understands too well how trying it is to be back in treatment for cancer. My dear friends also offered wonderful daily encouragement with special contact to lift my spirits.

After three months of chemotherapy, my follow-up PET scan in January 2023, showed “complete interval resolution of the abnormal marrow and nodal activity evident on the previous study.” Although I’m not an expert, the comparison of the images of my body between September and January was remarkable. In the Bing Center for Waldenström’s clinical review of its patients led by my doctors and joined by their colleagues from three Harvard hospitals in Boston, my PET scan results were examined, and one more round of chemotherapy was unanimously recommended to complete my treatment.

My third medical miracle has arrived! According to Dr. Steven Treon, Director of the Bing Center for Waldenström’s Macroglobulinemia in Boston, “From all evidence so far, it appears you may be in complete remission!” My deepest gratitude to him, Dr. Jorge Castillo, Clinical Director of the Bing Center, and my Virginia oncologist for their cooperative spirit with each other on my behalf and extraordinary attention in providing life-saving treatment to me is beyond words. In July 2023, a bone marrow biopsy and CT scans at the Bing Center for WM in Boston are planned to confirm my response.

Yet, again, I am celebrating the gift of life with Tony who has been a saint to me through countless years of ups and downs with experiences as a WM patient. He has been by my side and done absolutely everything possible to love and support me endlessly. For care partners, be sure to get the support you deserve for yourself, as cancer in your world is very challenging for you too.

Amazingly, although I couldn’t swim for seven months, I exceeded my own goal and swam for 40 minutes during my first time back at a pool in my fight to regain strength and normalcy. And I can now walk for 15 minutes outside every day, too, as my swollen feet have resolved. Tony even took me to a favorite place for my March 2023 birthday, the first time we’ve gone to a restaurant since August 2022.

As I mentioned earlier, in sharing my medical miracles with you, my dream is to give you hope for your own cancer treatments – and success. I encourage you to stay in contact with family and friends, be a proactive advocate for yourself, read PEN’s news and that of other relevant cancer support organizations, follow your own status, and reach out to your oncologist immediately with concerns or new symptoms, see a specialist for your specific cancer if possible or have your oncologist consult with one. Stay hopeful and realize that profoundly sophisticated advancements in medical research and science are progressing at a phenomenal pace for all cancers and continue forward with unwavering commitment by medical experts across the globe. I have benefited from this greatly in my own experiences in the past 10 years and may this be truly inspiring for you too!

Wishing you all the best in every way!

Sincerely, Lu Kleppinger

Footnote:

* Brief history…In August of 2012, being highly symptomatic, I was diagnosed with Waldenström macroglobulinemia (WM), One week later, I started chemotherapy provided by my Virginia oncologist. In March 2013, I became a patient of Dr. Steven Treon, Director of the Bing Center for WM/DFCI/Harvard Medical School in Boston and he extended my chemotherapy for an extra year. After 18 months and 50 infusions, it was an extraordinary success and gave me five years of being under control without treatment. In 2014, my hematologist, Dr. Jorge Castillo, Clinical Director at the Bing Center, said “You are doing really, really, great! Go live and have fun!” I did just that.

In 2019, my WM flared up a second time, and Dr. Castillo placed me on ibrutinib (Imbruvica), a daily pill for life. The results were incredible within a month, and my WM was under control yet again. I lived a normal life for three years, feeling cancer-free.

Original Stories of Hope from the first two episodes can be found at Lymphoma.org and IWMF.com.

30-Year Acute Myeloid Leukemia Survivor Shares His Journey

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30-Year Acute Myeloid Leukemia Survivor Shares His Journey from Patient Empowerment Network on Vimeo.

What might acute myeloid leukemia (AML) patients experience for symptoms, treatment, and coping with AML? AML patient and Empowerment Lead Art Flatau shares the experience of his AML journey from diagnosis, through treatment and AML survival, and advancements in AML treatments.

Art also shares his empowerment advice for patients and care partners to ensure optimal care and how he has found a sense of purpose in patient advocacy efforts.

See More from [ACT]IVATED AML

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Empowered AML Patient: Ask the AML Expert 

 How an AML Survivor’s Resilience Saved Her Life

How an AML Survivor’s Resilience Saved Her Life 

 Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial

Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial 

Transcript:

My name is Art, and I live in Austin, Texas. In 1992, I was 31 and married with two young children. I was in graduate school and working full-time. For a couple weeks, I had been feeling tired and had been running a low-grade fever. I also had a lot of bruises, probably because I was playing rugby at the time. I thought the fatigue was because I was overworked and getting  too little sleep.

On Saturday, I had a rugby game but was too tired to play more than a few minutes. The next day, I was too tired to do much. My wife and I decided that I would go to the doctor on Monday. 

Monday morning, I woke, and there was blood on my pillow as my gums were bleeding. My wife wanted to take me to the ER, but I convinced her to just call our doctor. I went to the doctor later that morning. She noted my symptoms, did a quick exam, and sent me for blood work. After lunch, she called and said I needed to go to the hospital and see a hematologist. I knew I was in trouble.

We talked to the doctor and he said, “We have to see what kind of leukemia you have.” What a shock.  I knew that I was sick with something I had not had before. The fact that it was cancer was a shock. I didn’t know that there were different types of leukemia but soon found out that I had acute myeloid leukemia (AML).

That evening, I received platelets and red blood transfusions. The next morning, I had a bone marrow biopsy, more platelets, and surgery to put in a central line. That afternoon, less than 24 hours after hearing the word leukemia in reference to me, I started chemotherapy. This was all overwhelming. We had no way to understand what our options were or to get a second opinion.

Three-and-a-half weeks later, I got out of the hospital with no hair, 25 pounds lighter, a lot weaker but alive. I had more chemotherapy in the next few weeks and more hospitalizations. A few months later, I was finished with chemo. I regained some strength, regrew my hair, and tried to get my life back to normal.

In early 1993, about 9 months after being diagnosed, we got another shock, I had relapsed. I needed to have a bone marrow transplant. Although we had a little time, a few days to figure out where to go for a transplant, we were again struggling to understand the process. We were also struggling to figure out how to move to Dallas for three more months for the transplant. The transplant was a long grind, a month or so in the hospital, a couple of months of going to the outpatient clinic two to three times a week, but we made it through. 

Now, 30 years later, I’m still around. My children graduated from high school, college, and graduate school and have successful careers. My wife and I are empty-nesters.  I am still working but hoping to retire in a few years. Although I consider myself very lucky to have survived and have had relatively few side effects, I do have some side effects to deal with, including low testosterone.

Some things that I’ve learned during my AML journey include: 

  • AML is a rare disease: The good news is that over the last several years a lot of new treatments have been discovered for AML. These new treatments are leading to more people surviving AML. However, these new treatments are evolving rapidly. It is important to find a cancer center and doctors who treat a lot of patients with leukemia. 
  • Consider volunteering: Advocacy work is an excellent way to help yourself and to support other patients and continued research efforts.
  • If something doesn’t feel right with your health, advocate for yourself and ask for further testing.

These actions (for me) are key to staying on my path to empowerment.

Share Your Feedback About [ACT]IVATED AML

How Should MGUS Be Monitored Over Time?

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How Should MGUS Be Monitored Over Time? from Patient Empowerment Network on Vimeo.

Myeloma expert, Dr. Saad Usmani, discusses the diagnosis of monoclonal gammopathy of undetermined significance (MGUS) and how patients are monitored, including key lab values that should be followed.

Dr. Saad Usmani is the Chief of Myeloma Service at Memorial Sloan Kettering Cancer Center in New York City. Learn more about Dr. Usmani, here.

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What Do Myeloma Test Results Reveal About Prognosis and Treatment?

Transcript:

Katherine Banwell:

Here’s a question we received from a viewer before the program. Mary writes: “I was just diagnosed with MGUS, and I’m obviously very concerned. What should I be looking for, and how often should I check in with my doctor?”

Dr. Usmani:

That is a very good question. MGUS is a precursor disease to myeloma and other class cell muscle disorders. And based on the original homestead county data from the Mayo Clinic, if there were 100 folks who had MGUS, one out of 100 every year would – there’d be one percent likelihood of them progressing to myeloma or some other plasma cell disorder.

So, the overall risk say in the next 20 years for a given patient is fairly low. And what we look at when we’re determining how frequently to check the blood or see the patient is the value of that M-spike.

If it’s a high value, if it’s two or three, we’ll be checking the labs more frequently every three months or so. Maybe seeing them every six months for the first year or two. If the M-Spike value is very low, it’s one gram or less, we might be just checking labs once or twice a year and seeing patients once a year. But I would highly recommend in addition to seeing your regular hematologist who diagnosed you with this MGUS to do seek an opinion at a myeloma center of excellence. 

MPN Patient Shares Advice for Making the Most of Telemedicine Visit

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MPN Patient Shares Advice for Making the Most of Telemedicine Visit from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasm patient Debbie has had the opportunity to utilize telemedicine in her care. Watch as she shares the pros and cons of telehealth methods in her blood cancer monitoring and her advice to other patients for optimizing virtual visits.

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Transcript:

Debbie:

I think there is definitely a place for telemedicine in our care. It has enabled us to, or enable me to keep in touch with my hematologist and to understand where my blood counts currently are. What I would also say is, it’s…that there are positives and negatives. I think that the positive of it is the fact that I’ve got a regular update on what my blood counts actually are. I think the negatives of it can be, is that it is quite easy just to move the conversation quite quickly forward. It’s easier for me to just say, everything’s all okay. Thank you for updating me over the telephone, then it is perhaps if I was actually sat in front of somebody.

I think that the challenges it presents is that personal touch, is that feeling of being able to have a one-to-one relationship with your consultant. I don’t think you have that over the telephone.

So, some of the tips that I would share are that you keep in regular contact with your hematologist, you keep regular information on your blood counts, but you keep in a very, very safe environment. You do keep in a safe environment, and that I think is something that’s enormously important. A tip that I would probably give is that make sure that in between your appointments, you do what you would do regularly on a face-to-face and make notes of the things that you want to talk about…because I quite often put the phone down and think, I wish I had said that when I go to the hospital, I will have my notes in front of me and I put them on the table, and I’ll cross-check them with the hematologist at the time, I tend not to do that on the telephone, and perhaps I should, so I would definitely recommend that you treat the tele appointment exactly the same as you would the hospital appointment.

Who Is on a Patient’s CLL Care Team?

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Who Is on a CLL Patient’s Care Team? from Patient Empowerment Network on Vimeo.

Who are the members on a chronic lymphocytic leukemia (CLL) patient’s care team? Dr. Matthew Davids explains the members of the healthcare team – and shares advice for ensuring the patient receives complete information for optimal care.

Dr. Matthew Davids is Director of Clinical Research in the Division of Lymphoma at Dana-Farber Cancer Institute. Learn more about Dr. Davids here.

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Transcript:

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 are 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.

Newly Diagnosed With an MPN? Start Here.

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Newly Diagnosed with an MPN? Start Here. from Patient Empowerment Network on Vimeo.

If you’ve been diagnosed with an MPN, such as essential thrombocythemia (ET), polycythemia vera (PV) or myelofibrosis (MF), Dr. Ruben Mesa outlines key steps you should take, including a visit with an MPN specialist.

Dr. Ruben Mesa is an international expert in the research and care of patients with myeloproliferative neoplasms (MPNs). He serves as director of UT Health San Antonio MD Anderson Cancer Center in San Antonio, Texas. More about this expert here.

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Transcript:

Dr. Ruben Mesa:

Patients who have a Myeloproliferative Neoplasm should consider seeing an MPN specialist at least at some frequency. The myeloproliferative neoplasms are not common illnesses. They’re not exceedingly rare, but they’re not common. And there is many nuances in terms of how we best diagnose the disease; the discussion we have with you regarding what are the treatment plans and goals, and then putting that plan into effect.

So, frequently, there’s a value in seeing someone who focuses on MPNs to help to establish that plan, and then frequently, there is a home physician, hematologist, or medical oncologist that works together along with the specialist in terms of managing the patient.

When patients first come for their visits related to an MPN, they have many questions. You know, they’re not common diseases, and people typically don’t have much experience with them. They’ve not had a family member that’s afflicted or someone at work. So, frequently, it comes on out of the blue. People will frequently, sometimes, go online and get a lot of information, but sometimes too much information; information that may or many not be appropriate for them.

So, there are many questions that are valuable, and I always advise patients to write down their questions ahead of time because sometimes in the heat of the moment, having a conversation, particularly with a new physician or provider, those questions may not, necessarily, be top of mind for them. So, we can go through those questions clearly.

I think key questions, I wouldn’t limit it to one key question, but I’d say I would put them in categories. 1.) Truly understanding the diagnosis; what’s the actual diagnosis that that patient has. 2.) What does the physician think are the risks that patient has? With each of the diseases, there are different risk classifications, and that will also help to give patients a frame of reference if they read other information about their disease online from highly reputable sources, or other educational sort of materials.

To understand, what is the recommended treatment plan. The plan may or may not included medications and understand what those medications are intended to do, and what their side effects may be, or what to anticipate.

It may or may not include aspirin, it may or may not include phlebotomy, or it may or may not include other therapies. So, understanding that diagnosis, understanding the risk, and understanding, what is the recommendation in terms of treatment.

Essential Lab Tests for Myeloproliferative Neoplasm (MPN) Patients

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Essential Lab Tests for Myeloproliferative Neoplasm (MPN) Patients from Patient Empowerment Network on Vimeo.

 Lindsey Lyle, a physician assistant specializing in MPNs, reviews the lab tests that should be administered following an MPN diagnosis and how the results could affect overall care.

Lindsey Lyle is a physician assistant at the University of Colorado Cancer Center, specializing in hematological malignancies with a subspecialty in myeloproliferative neoplasms (MPNs). More about this expert here.

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Transcript:

Lindsey:

When somebody is diagnosed with an MPN, there are a variety of tests that are important for coming up with treatment strategies. And so, really, before starting treatment, it’s fairly imperative to have a CBC, or complete blood count, which was very likely done that led to the diagnosis of the MPN, but that’s very critical, as well as having a differential. This is basically just looking a little bit deeper at the white blood cells and their components, so that’s a critical part of the CBC, or complete blood count.

And then, having a chemistry panel, just to look at organ functioning, such as the kidney functioning and the liver functioning, as well as different electrolytes that may be indicative of something going on that would maybe impact treatment.

Additionally, having a bone marrow biopsy with molecular testing is advised. This is very critical in leading to the diagnosis of the MPN and then, also, really differentiating what subtype of MPN a patient may have.

The bone marrow is very critical for this purpose, and the genetic testing helps us to understand perhaps if a patient is having a higher-risk disease or a lower-risk disease and can help guide treatment as well. There are a variety of other chemistry tests that are done that can help specifically when looking at patients with polycythemia vera. This may be called an erythropoietin level.

Additionally, iron studies are generally recommended before starting treatment for MPNs, just to assess iron storage, availability, and that sort of component to the treatment may vary depending on that result. Additionally, if patients are having any sort of symptoms related to an enlarged spleen, generally, having an imaging study may be warranted if the symptom is quite severe and causing problems, and getting a baseline prior to starting treatment is generally a good idea.

When looking at a CBC, there are really three main cell lines that we monitor closely in MPNs regardless of the subtype, and this includes the white blood cell count, the red blood cell count or hemoglobin and hematocrit – those are measures of the total red blood cell count – and then, also, platelets. And so, these really are three different types of cells that your bone marrow produces that help with different functions.

And so, monitoring for any sort of changes within these three cell lines – white blood cells, red blood cells, or platelets – can really help us know maybe how the disease is changing, how a patient is responding to treatment, so these three key laboratory values are very necessary and really help us as providers and U.S. patients monitor progress, or for any changes in a positive way, or perhaps in a way that needs to be addressed.