Tag Archive for: white blood cells

How Can You Thrive With an MPN? Advice for Navigating Care.

/in , , , , , , , /by
Bookmark (0)

No account yet? Register

How Can You Thrive With an MPN? Advice for Navigating Care. from Patient Empowerment Network on Vimeo.

How can you thrive with an MPN? In this animated explainer video, an MPN specialist and myelofibrosis patient discuss how to make informed decisions about your care and live a full life with an MPN.

 

Related Programs:

Thriving With an MPN | Tips for Managing Worry and Anxiety

Thriving With an MPN | Tips for Managing Worry and Anxiety

 Finding an MPN Treatment Approach That Is Right for You

Finding an MPN Treatment Approach That Is Right For You

 How Can Patients Navigate Care and Thrive With an MPN?

How Can Patients Navigate Care and Thrive with an MPN?

Transcript:

Brian: 

Hi, I’m Brian. Nice to meet you! Many years ago, I was diagnosed with a condition called myelofibrosis. At first, it was a scary to learn that I had cancer, but once I found the right treatment option for me, I’ve been living a full life.  

Meet, Dr. Liu – my doctor. 

Dr. Liu: 

Hi! I’m Dr. Liu, and I’m a hematologist specializing in the care of people with myeloproliferative neoplasms or MPNs.   

MPNs are a group of blood cancers that are characterized by the bone marrow overproducing a certain type of cell. The three types of MPNs are essential thrombocythemia, or ET,  polycythemia vera or PV, and myelofibrosis, or MF. 

As Brian mentioned, with the right treatment, it is possible to live a full life and to thrive with an MPN. 

Brian: 

It’s so true. Navigating my care has been much easier because I partner with my healthcare team – participating in decisions makes me feel like an important member of the team. 

Dr. Liu: 

That’s right, Brian. When considering treatment, it’s important to weigh all of your options.  

While your healthcare team is the expert when it comes to the clinical side of your disease, you as the patient, are the expert on how treatment will impact YOU and your lifestyle.  

Brian: 

And as someone who knows my needs well, my wife is another key member of my team.  She comes with me to appointments and takes notes during visits, and when it is time to make decisions about my care, we both feel well-informed about the options. 

So, Dr. Liu – what factors should be considered when choosing an MPN treatment?  

Dr. Liu: 

Well, it’s important to note that everyone’s MPN is different so what may work for one person, may not work for another. In general, we consider certain factors,1 such as: 

  • The type of MPN, whether it is ET, PV, or MF. 
  • The patient’s age and overall health. 
  • Test results, including blood work or any genetic testing that has taken place. 
  • The symptom burden, which basically means how much the disease symptoms are interfering with a patient’s quality of life. 
  • Any pre-existing health issues. 
  • Finally, and most importantly, the patient’s preference.  

Brian: 

And I like to make informed decisions. So, when considering therapy, I also did some research on my own, and then discussed the information with my healthcare team. It helped my wife and me understand what we’d learned, and confirmed our decision. 

Dr. Liu, what sort of questions should patients ask their doctor when considering a treatment plan? 

Dr. Liu: 

Great question. When choosing therapy, patients should ask: 

  • How is the treatment administered, and how often will I need treatment? 
  • What are the potential side effects of the treatment? 
  • How will the effectiveness of the treatment be monitored? 
  • And, what are options if this treatment doesn’t work for me? 

Brian: 

That’s great advice. Once you’ve begun treatment, it’s important to continue to share how you are feeling with your healthcare team – be sure to mention any side effects or symptoms you may be having with your team. 

Dr. Liu: 

That’s right, Brian. If you speak up about what’s bothering you, we can usually find a way to manage the issue. 

It’s also important point to tell your doctor if you’ve missed a dose of your medication. Many of the newer MPN therapies are self-administered, and it’s important to let us know so we can adjust the plan if necessary. 

So, what steps should you take to thrive in your life with an MPN? 

Brian: 

  • First, understand and participate in treatment decisions. Be sure to share your personal preferences. 
  • Then, communicate regularly with your healthcare team – don’t wait to share information only when you have an appointment.  
  • And, utilize your whole team – nurses, nurse practitioners, and others, are all there to help you. 
  • Use your patient portal. You can view lab work and test results, or even use the messaging feature to communicate with your team. 
  • Bring a friend or loved one to appointments and always write down any questions or concerns in advance.  

Dr. Liu: 

And, most importantly, remember you are at the center of your care. Advocate for yourself! 

To learn more, visit powerfulpatients.org/MPN to access a library of tools. Thanks for joining us! 

What Are Indicators of MPN Progression?

/in , , , , , , , /by
Bookmark (0)

No account yet? Register

What Are Indicators of MPN Progression?  from Patient Empowerment Network on Vimeo.

What are signs that essential thrombocythemia (ET), polycythemia vera (PV) or myelofibrosis (MF) may be progressing? Dr. Jeanne Palmer, of the Mayo Clinic in Arizona, reviews factors that may indicate progression and discusses how blood counts are used in disease monitoring.

Dr. Jeanne Palmer is a hematologist specializing in myeloproliferative neoplasms (MPNs) and bone marrow transplant at the Mayo Clinic in Arizona. Dr. Palmer also serves as Director of the Blood and Marrow Transplant Program and is Vice Chair and Section Chief for Hematology. Learn more about Dr. Palmer, here.

 

Related Programs:

 
How Should You Participate in MPN Care and Treatment Decisions?

How Should You Participate in MPN Care and Treatment Decisions?

 How Can Patients Navigate Care and Thrive With an MPN?

How Can Patients Navigate Care and Thrive With an MPN?

 Understanding Treatment Options for ET, PV, and Myelofibrosis

Understanding Treatment Options for ET, PV, and Myelofibrosis

Transcript:

Katherine Banwell:

Okay. Katie had this question. “What are the signs of progression from PV to MF or AML, both clinically and in blood tests, and when do you need a new bone marrow biopsy to check for this happening?” 

Dr. Jeanne Palmer:

So, in terms of progression, there are several things that we see happen. 

I think most importantly is, let’s say you have PV, and you’ve always been on medication, and it’s been hard to control. And all of a sudden, you don’t need medication to control it anymore, or the same thing for essential thrombocythemia. You have been taking medication, and all of a sudden your platelets go down, and you don’t need to take drugs anymore. A lot of times people are like, “Oh, that means I’m fixed and I’m well,” not necessarily, you really need to make sure to talk to your healthcare provider and potentially get a bone marrow biopsy. 

Now, the other thing – sometimes the blood counts will actually drop too low, so you’ll have somebody who has PV, who has always been too high and then all of the sudden they come in, and their hemoglobin is very low, and they’re anemic, and that’s another situation where you do that. So, anytime the blood counts start to drop is concerning. 

Now, it’s a continuum, so the blood counts may drop as you’re at the point of transitioning but it doesn’t – it’s not like if your blood count is dropping you say, “Oh my God, I have myelofibrosis, I need a bone marrow transplant tomorrow.” That’s not necessarily the case. This is generally a transition type process. 

Also when the spleen starts to get enlarged. Now, the spleen can be enlarged even in the setting of just ET or just PV, so spleen enlargement does not necessarily mean you’re transforming, but it can be one of the things that we would see that would indicate that. 

Katherine Banwell:

Okay. 

Dr. Jeanne Palmer:

And then finally white blood cell count increasing can often be a sign of that. Now, in terms of progression to AML, that is generally something we’ll see in the blood. AML or acute myeloid leukemia, is indicated by the presence of blasts at greater than 20 percent. Now, many patients with myelofibrosis, in particular, but even PV and ET, may have blasts in their peripheral blood. Blasts are normal. If I did a marrow on every healthy person out there, they are going to have some blasts, because these are the first part of the development of white blood cells. So, they’re like baby white blood cells. But what the problem is, is when they start to grow too much. 

And so in the setting of myelofibrosis and even sometimes with these other diseases, the blasts will be in the peripheral blood primarily because the bone marrow is damaged and doesn’t hold them in very well. It becomes AML when it gets greater than 20 percent, so that blasts of greater than 20 percent in the peripheral blood or in the bone marrow but a lot of times we find it in the peripheral blood is where we indicate this has progressed to AML. 

Katherine Banwell:

Yeah.  

Dr. Jeanne Palmer:

Blasts of greater than 10 percent are also something that we really want to pay attention to, because that would suggest that the disease is starting to become more aggressive. Now, blasts vary, so for example, I’ve had patients go up to 11 and then drop back down to 3 or 4, and then they say around 3 or 4 or 5. So, you always want to make sure to double-check because one blast count at 11 percent, whereas it’s very important to address, may not necessarily reflect that you need to change in treatment at that time. Again, these blood tests, I always tell people, do not freak out over one blood test. 

Make sure you get at least a couple of them to really confirm what you are looking at. 

How to Make an Informed MPN Treatment Decision

/in , , , , , , , /by
Bookmark (0)

No account yet? Register

How to Make an Informed MPN Treatment Decision from Patient Empowerment Network on Vimeo.

When faced with several options, how can you decide on the best therapy for your essential thrombocythemia (ET), polycythemia vera (PV), or myelofibrosis (MF)? In this explainer video, Katrina and her doctor walk through important considerations when choosing treatment and provide advice for partnering with your healthcare team.

See More from Engage

Related Programs:

What’s YOUR Role in Making Myelofibrosis Treatment Decisions?

Primary vs. Secondary Myelofibrosis: What’s the Difference?

COVID-19 Vaccination: What Do Myelofibrosis Patients Need to Know?

Transcript:

Katrina:

Hi, I’m Katrina. Nice to meet you!

Several years ago, I started having headaches and felt very tired. After a trip to the doctor and undergoing bloodwork, I was diagnosed with polycythemia vera, or PV, which is a rare blood cancer that causes my body to produce too many blood cells. It was overwhelming at the time to learn that I had a blood cancer, but my hematologist, Dr. Liu, told me more about the condition and how it’s managed.

Here’s Dr. Liu–she can explain it further.

Dr. Liu:

Hi! I’m Dr. Liu, and I’m a hematologist specializing in the care and treatment of people with myeloproliferative neoplasms or MPNs. MPNs are a group of blood cancers that are characterized by the bone marrow overproducing a certain type of cell. Katrina was diagnosed with PV, which is one of the three MPNs. The three types of MPNs are:

Essential thrombocythemia, or ET, which means that the body is producing too many platelets. The second is polycythemia vera or PV. PV is characterized by the overproduction of red blood cells, and, in some cases, elevated white blood cells and platelets. And the third is myelofibrosis or MF, which causes scarring in the bone marrow that disrupts the normal production of blood cells.

When a patient is diagnosed with any of these conditions, there is a chance they could progress from one condition to the next.

Those that have been diagnosed with ET, PV or MF, should have regular visits with their hematologist to monitor their condition and find the most appropriate treatment to manage their MPN.

Katrina:

After I was diagnosed, I met with Dr. Liu and she walked me through the goals of treatment for PV.

Dr. Liu:

Right! First, we talked about the clinical goals of treatment for PV, which are to reduce the risk of a blood clot and ease or eliminate any symptoms.

And, it’s important to note that because each of the MPNs is different, they are treated differently – be sure to discuss the specific goals of YOUR MPN with your doctor.

Katrina and I reviewed the effectiveness of each treatment option, including how treatment would be administered, and took all of her test results into consideration to make sure we found the best, most personalized treatment option for her PV. Then, we went over what our next steps would be if the treatment plan needed to be adjusted.

Katrina:

Next, we talked about another key treatment goal: symptom management. Dr. Liu let me know that I should make her aware of any symptoms that I may be having, even if I don’t think it’s related to my PV.

Dr. Liu:

Exactly, Katrina. A significant change in symptoms can indicate that it may be time to switch treatments or that the disease might be changing. Those symptoms may include enlarged spleen, fever, itching, fatigue and anemia, among others. This is why it’s always important to not only have blood counts checked regularly, but it’s essential to tell your doctor or nurse about any symptoms you may be having, even if you don’t think it’s related to your MPN.

And, last but not least, we discussed the most important treatment goal: Katrina’s goals. Katrina let me know that she’s very social and enjoys playing golf and tennis with her friends – we wanted to make sure she could continue doing the activities she loves.

Katrina:

Dr. Liu reviewed each of the treatment approaches with me, including potential side effects for every therapy and how it could impact my lifestyle. We discussed the pros and cons of each option, together.

Dr. Liu:

Exactly! When deciding on therapy, you and your doctor may also consider:

Your age and overall health, any presence or history of other medical problems, and the financial impact of a treatment plan.

Katrina:

In addition to asking questions, my daughter, Sarah, took notes during our appointments, since it was often hard for me to absorb everything at once.

We also made sure to talk about the appointment on our way home, while the information was fresh on our minds. And we did our part by researching PV and bringing a list of questions to each appointment.

Sarah found an office visit planner on the Patient Empowerment Network website that helped me organize my health info and questions.

Dr. Liu:

As you can see, Katrina and her daughter were actively engaged in each care decision. It’s vital that patients feel empowered to speak up. If you can, bring a friend or loved one along to your appointment.

And, if you are able, it’s a good idea to seek a second opinion or a consultation with an MPN specialist to help you feel confident in your care decisions.

Katrina:

Dr. Liu let me know that she would monitor my condition through regular physical exams, blood work and frequent communication. She made Sarah and I feel included in the decision-making process, as if it were a collaboration.

Dr. Liu:

That’s right. This is a partnership. So, what steps can you take to be more engaged in your MPN care?

  • Bring a friend or loved one to your appointments.
  • Understand and articulate the goals of your treatment plan.
  • Learn about your options and weigh the pros and cons of each approach.
  • Consider a second opinion or a consult with a specialist.

Katrina:

That’s great advice, Dr. Liu. To learn more, visit powerfulpatients.org/MPN to access a library of tools.

Thanks for joining us!

Essential Lab Tests for Myeloproliferative Neoplasm (MPN) Patients

/in , , , , , , , , /by
Bookmark (0)

No account yet? Register

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.

See More From the The Path to MPN Empowerment

Related Programs:

Can Diet and Exercise Reduce MPN Symptoms?

Expert Tips for Managing MPN-Related Anxiety

Improving Life with MPNs: The Latest Research and How to Get Involved

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.