Tag Archive for: emotions

What is Multiple Myeloma (MM)?

What is Multiple Myeloma (MM)? from Patient Empowerment Network on Vimeo.

What happens in multiple myeloma? Watch as myeloma expert Dr. Peter Forsberg explains what occurs in the body with myeloma, and patient and Empowerment Lead Lisa Hatfield shares emotions she experienced after her diagnosis and how her outlook changed as she learned about myeloma treatment.

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See More from START HERE Myeloma

Related Resources:

What Are the Beginning Stages of Multiple Myeloma (MM)

What Are the Beginning Stages of Multiple Myeloma (MM)?

How is Multiple Myeloma Diagnosed and What Testing is Necessary After

How is Multiple Myeloma Staged


Dr. Peter Forsberg: 

So, multiple myeloma is a blood cancer. It comes from cells that live in your bone marrow called plasma cells. They’re part of your immune system. And when they do their job, they help protect you from infections.

They’re antibody-producing cells. In myeloma, unfortunately something changes in those cells, and they begin to grow and live beyond what they normally would. So, myeloma is a disease that results from that and when myeloma is diagnosed, it’s usually because those plasma cells or the antibody they produce has started to cause problems, to cause destructive changes or symptoms. So, that’s multiple myeloma.

Lisa Hatfield:

When I first really understood what myeloma was, I think it’s natural to freak out at first. It’s an incurable blood cancer. You hear the word “incurable” first, and it’s very very scary. Once I digested some of the information I was receiving and understood it’s a type of blood cancer that can be managed nowadays – it’s a little bit different than 20 years ago when it felt more like a death sentence that could be managed – I started to feel a little more confident. I think initially I had to understand that I would probably go through this grief cycle and have a little bit of shock, have some denial, have some anger. But once I accepted that, it became a lot easier. But when I first understood myeloma, it was was scary, it was shocking. And it just took some time to finally settle in and understand it better.

Will Telemedicine Improve My Quality of Life with CLL?

Will Telemedicine Improve My Quality of Life with CLL? from Patient Empowerment Network on Vimeo.

How do chronic lymphocytic leukemia (CLL) patients and care partners feel about the impact of telemedicine on quality of life? Watch as a CLL patient and care partner, Bob and Susan, discuss how easier access to blood test results affects patient emotions before and during remote office visits.

See More From the CLL TelemEDucation Empowerment Resource Center

Related Resources:


Will Telemedicine Be a Long-Term Survivorship Tool for CLL Patients?

Is Remote Monitoring for CLL Patients on CAR T Therapy the Future?

What CLL Symptoms Can Be Monitored via Telemedicine?


Susan Bottega: 

The role of telemed in terms of survivorship I think is a very, very interesting subject. CLL patients are living a very long life these days with the onset of the novel agents that are coming out. Quality of life becomes a very, very important subject for CLL patients. So much of their quality of life is diminished by the visits that they have to make into doctors’ offices.

The anguish that they spend the day before, the sleepless night that accompanies the doctor’s visit. I think that this is extremely important. You’re looking very possibly of at least two days taken out of your life, and if you’re making these visits on a monthly basis or bi-monthly basis or even tri-monthly basis, that’s a long period of time to take out of the span of your lifetime. And as we’re living longer, this becomes more and more important.

You want to have that quality of life, you want to be able to go on vacations. Your vacations can’t be postponed because you have a doctor’s appointment looming in the future. You can take your computer right along on vacation with you and share your vacation with your doctor.

Bob Bottega:

I like that.

Susan Bottega:

I think the anguish that you feel about blood tests is diminished by it. You don’t have to wait to get the results of your blood tests, your blood tests pop right up on your patient portal. You don’t have to sit there and wait in a doctor’s office until you see those results.

Once you see your doctor, you’ve already got your results and you’re calm about it, you’re relaxed because you know what the results are and you can discuss them without having to deal with the anxiety that comes with hearing, “Okay, my white blood cell count has gone up considerably, so how do I calm myself down to discuss this intelligently at this point in time when I’m emotionally so upset over it?” I think these are very, very important things about the quality of your life. How about you, Bob?

Bob Bottega:

I think you said it all.

Susan Bottega:

Don’t I always? (laughter)

Managing the Emotions of a Chronic Illness #patientchat Highlights

Last week, we hosted an Empowered #patientchat on managing the emotions of a chronic illness. The #patientchat community came together for an engaging discussion and shared their best advice and tips.

Top Tweets and Advice

Step One: Acknowledgement

Emotions Aren’t “Negative” or “Positive”

“We all deserve the freedom to express feelings all the time”

Full Chat