Posts

What Questions Should I Ask If I Suspect Acute Myeloid Leukemia?

What Questions Should I Ask If I Suspect Acute Myeloid Leukemia? from Patient Empowerment Network on Vimeo.

As an acute myeloid leukemia (AML) patient, what questions should a patient ask if they suspect AML? Watch as expert Dr. Catherine Lai shares tests that can help rule out AML and common symptoms that may serve as warning flags to patients.

See More from Best AML Care No Matter Where You Live

Related Resources:

Are Acute Myeloid Leukemia Patients at Risk for Secondary Cancers?

Are Acute Myeloid Leukemia Patients at Risk for Secondary Cancers?

How Has Acute Myeloid Leukemia Detection Evolved Over Time?

How Has Acute Myeloid Leukemia Detection Evolved Over Time? 

Acute Myeloid Leukemia, Recommended Coping Methods and Mental Health

Acute Myeloid Leukemia, Recommended Coping Methods and Mental Health


Transcript:

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 ruled 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 happens 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.

MPN Patient Shares Advice for Making the Most of Telemedicine Visit

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.

See More From the MPN TelemEDucation Resource Center

Related Resource:


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.

MPN Patient and Care Partner Tips for Utilizing Telemedicine

MPN Patient and Care Partner Tips for Utilizing Telemedicine from Patient Empowerment Network on Vimeo.

Myelofibrosis patient Summer Golden and care partner Jeff Bushnell have learned the ins and outs of telemedicine. Watch as they share some advantages of virtual visits, instances when in-person visits are used for MPN monitoring, and their tips for optimizing telemedicine visits.

See More From the MPN TelemEDucation Resource Center

Related Resource:


Transcript:

Jeff Bushnell:

We are very fortunate to live in San Diego here where there are major medical centers and research universities and so on, but a lot of people aren’t… and these MPNs are very, very rare diseases. And there are not a lot of doctors that specialize in them, so telemedicine will allow you to contact a specialist.

I know when we see the Summer’s doctor in-person, she does a physical exam specifically to check her spleen size, which is an important aspect of almost all of these MPNs and without the ability to do that the doctor is working all solely from blood counts.

Summer Golden:

It’s just like Zoom, it’ll never go away, and I do believe telemedicine will be here forever, another technical advantage.

Jeff Bushnell:

I think, especially after COVID, people are more used to telemedicine, and in the MPN community anyway, because of the lack of large numbers of doctors that know much about it, like telemedicine will open up sort of a new, a new type of being able to treat MPNs, just because more people will be able to contact specialists.

Summer Golden:

A top tip I think, it’s sort of logical, but is to have the questions and issues written out because it’s a limited matter of time and to specifically jot down the answers.

Jeff Bushnell:

Another tip would be to ensure that you have the appropriate stuff on whatever device you’re using to talk to the doctor on. We’ve used about three or four different apps as it were on our phone to communicate with different doctors, and you need to make sure that that works ahead of time. Usually, the way they do it is they set up the appointment, they contact you ahead of time, and make sure that it’s going to work before they put the doctor online. But that’s very important that you have the technical ability to ensure that your equipment can support telemedicine. They’re making it pretty easy, but you still have to do it.

My MPN Journey, Getting the Best Care After ET and MF Diagnoses

My MPN Journey, Getting the Best Care After ET and MF Diagnoses from Patient Empowerment Network on Vimeo.

Myelofibrosis and essential thrombocythemia (ET) patient Julia had experience as a health educator and hospital administrator before receiving her MPN diagnosis. Watch as she shares how she later connected the dots from her symptoms and blood work, lessons learned about myelofibrosis patient journeys, and her advice for living well with MPNs.

Related Resources:

Expert Advice for Learning About Your MPNs Online

MPN Caregivers: How to Provide Support During Appointments


Transcript:

Julia:

My name is Julia, I was diagnosed with essential Thrombocythemia in 2007, and then with myelofibrosis a year later, after a routine blood work. The diagnosis came out of nowhere. I was healthy and active prior to my diagnosis and raising five children with my husband. I’ll never forget the day I received a voicemail from my primary care doctor’s office, I really couldn’t believe what I was hearing. I didn’t have time for this illness in my life. I had a bone marrow biopsy that showed I was positive for JAK2 and had a 5q deletion genetic mutation. I started on daily aspirin, and it was a hard pill to swallow for many reasons.

As a certified health educator and former hospital administrator, I understood the importance of treating a rare disease, but I had a difficult time with the idea of taking medicine daily, and I felt like I didn’t have any symptoms. I reviewed my old lab print-outs that showed elevated platelets 15 years before, that slowly increased over time. I recall having severe migraines that would put me out of commission for the day, and tenacious fatigue in the years before, I didn’t connect the dots with the symptoms, and neither did my oncologist. By 2007, my platelets and white blood cells were very high.

I decided to find an expert with extensive experience with ET and MF to get top-notch monitoring and treatment. I connected with a specialist for many years and hope to keep living with my disease for many years ahead. I’ve had several hospitalizations and ER visits over the years, but keep on going. MF has absolutely changed the path of my life and how I live it, but I still do most of what I want to do while I’ve been lucky in maintaining stable myelofibrosis with no true signs of disease progression or serious myelofibrosis complications, it’s important to understand the path for other myelofibrosis patients might be quite different.

My advice for others MPN patients is:

  • Pay attention to how you feel and pace yourself
  • Keep track of your blood counts, so you can alert your care team
  • Find an MPN specialist for your care
  • Don’t forget to be present and spend time with your family.

These actions are key to staying on your path to empowerment