Tag Archive for: multiple myeloma

What Does Remission Mean in Myeloma?

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What Does Remission Mean in Myeloma? from Patient Empowerment Network on Vimeo.

The concept of remission in multiple myeloma can be complex. Myeloma specialist, Dr. Peter Forsberg explains. Want to learn more? Download the Find Your Voice Resource Guide here.

Dr. Peter Forsberg is assistant professor of medicine at the University of Colorado School of Medicine and is a specialist in multiple myeloma. More about Dr. Forsberg here.

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources

 

Relapsed and Refractory Multiple Myeloma: What’s the Difference?

  

Hesitant to Join a Support Group? Encouraging Advice from an Advocate

What is Personalized Medicine?

Transcript:

Dr. Peter Forsberg:

I also think that one thing that can be a little challenging in multiple myeloma is the concept of remission. I think in multiple myeloma what we think of as remission may be a little bit different than in other diseases, and I know that can be confusing for patients. Remission may just mean an interval of myeloma control. It may still be a time where you’re on active therapy or where the active therapy that you’re receiving hasn’t changed too substantially, but where the myeloma is under control whether it’s still detectable or not. So, that name can be a little bit different than what we think of as remission in other types of cancer and that can be a little confusing.

Multiple Myeloma

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This podcast was originally published by City of Hope Radio here.

Gargi Upadhyaya, MD, FACP – Speaker Bio
  • Topic Info: Myeloma is the second most common type of blood cancer, accounting for around one percent of blood cancer cases. It develops in plasma cells, white blood cells that grow in bone marrow. Myeloma most often affects the aged — most cases are diagnosed in people age 65 and older. Although myeloma grows within bone, it is not considered bone cancer.

    Listen as Gargi Upadhyaya, MD discusses multiple myeloma and the treatment options at City of Hope.

Financial Assistance: Filling in the Gaps

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This blog was originally published on Bone Marrow & Cancer Foundation here.

Lifeline Fund

The Lifeline Fund provides support to patients who often lack the financial resources necessary to afford the often overlooked living and ancillary expenses that can present considerable financial obstacles—or prohibit the transplant altogether. Funding from the Bone Marrow & Cancer Foundation’s Lifeline Fund helps to cover the myriad costs associated with transplants, such as donor searches, compatibility testing, bone marrow harvesting, medications, home and childcare services, medical equipment, transportation, cord blood banking, housing, and other expenses associated with the transplant. Health insurance often does not cover these vital support services, and many patients cannot afford them on their own.

Open Homes Medical Stays

Our partnership with Airbnb’s Open Homes Medical Stays program provides free temporary accommodations to patients diagnosed with any form of cancer or undergoing a hematopoietic stem cell transplant, as well as housing for their caregivers, family members, and donors.

One-to-One Funds

A One-to-One Fund is a personal fund created for a specific patient. It is a simple and effective way for a patient’s family, friends, and community to raise money on a patient’s behalf with all money raised going directly to their benefit. All donations are tax-deductible. The Bone Marrow & Cancer Foundation administers and maintains the fund, and can offer support with fundraising ideas.

Scholarship Grants

Scholarship Grants help make educational aspirations a reality for bone marrow, stem cell and cord blood transplant survivors. Transplants affect all aspects of life and often prohibit the pursuit of educational opportunities. To address this, the Bone Marrow & Cancer Foundation offers survivors support towards an academic future so their hopes and dreams remain intact. Scholarship Grants support students of all ages as they pursue their educational goals.

Get The Best Myeloma Care NOW: A Physician’s View

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Get The Best Myeloma Care NOW: A Physician’s View from Patient Empowerment Network on Vimeo.

Advocating for yourself is critical when diagnosed with multiple myeloma. Dr. Peter Forsberg details the value of collaborating with your healthcare team on treatment decisions.

Dr. Peter Forsberg is assistant professor of medicine at the University of Colorado School of Medicine and is a specialist in multiple myeloma. More about Dr. Forsberg here.

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources

Overwhelmed By a Myeloma Diagnosis? The Key Steps to Take

Should You Consider a Second Opinion? Advice from a Myeloma Advocate 

Find Your Voice Myeloma Resource Guide

Transcript:

Patient education and self-advocacy I think are critical in multiple myeloma. Myeloma is a complicated disease. Getting your head around it can be challenging. Beyond that we have more and more treatments. Treatments are fairly complex. Our goals can be pretty different patient to patient. So really, patient education can be a key to understanding that and removing layers of complexity from something that can be a little challenging to get into.

I think self-advocacy is also really important in that, sometimes you can feel swept up into a wave of what the next treatments are gonna be, what the next steps are. So, making sure you’re taking time to voice your opinions or concerns for yourself, to make sure that you’re not leaving stones unturned in terms of what your best options are, what the best next steps are, what treatments or testing might be available.

I think myeloma, maybe more so than even some other diseases because it’s such a unique type of cancer, one where patients are often dealing with it for many years… Making sure that there’s a good level of education that evolves over time can help make sure that the patients get the best out of their treatments; to make sure that they’re able to have the most fulfilling experience dealing with their cancer and with their cancer team, and making sure that they’re advocating to get all options available to them in the mix potentially.

I think patients are often very thoughtful about knowing that providers are busy and that clinic can be kind of fast-paced, but I want to make sure that they know that the last thing that they’re ever doing is bothering me or other members of my team when they ask questions. I think one of the keys to making sure that everybody is comfortable with the steps we’re taking with their myeloma is to recognize that it’s a team. And the patients and myself and other members of my team, you know I think that the goal is for all of us to be on the same page and to understand what we’re working towards.

So, I think that my philosophy about how best to take care of patients tis to try to make it as collaborative as possible. To make sure people understand what we’re doing and why. And to be all on the same page I think you have to feel comfortable to take a moment to say, “Why are we doing this?” or to voice concerns about what’s going on or what the next steps might be.

Relapsed and Refractory Multiple Myeloma: What’s the Difference?

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Relapsed and Refractory Multiple Myeloma: What’s the Difference? from Patient Empowerment Network on Vimeo.

Dr. Peter Forsberg defines relapsed and refractory myeloma, terms often used when discussing myeloma, but not always explained.

Dr. Peter Forsberg is assistant professor of medicine at the University of Colorado School of Medicine and is a specialist in multiple myeloma. More about Dr. Forsberg here.

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources

Overwhelmed By a Myeloma Diagnosis? The Key Steps to Take

Discussing Treatment with Your Doctor: Key Questions to Ask

Find Your Voice Myeloma Resource Guide

Transcript:

So, I think that in differentiating relapsed and refractory multiple myeloma, they sometimes get lumped together and you might say relapsed and refractory myeloma. And that’s partly because that’s groups of patients who are included in the same clinical trials or different things like that.  But they are different things. A patient who is relapsed may have been off treatment for a substantial amount of time before they relapsed. A patient with refractory multiple myeloma, they may be refractory to just one type of medicine.

You may be refractory just to lenalidomide if you’re myeloma progressed or relapsed while you were taking it, or it may mean that you have not responded very substantially to any of the medicines you have received so far. So, there are different categories even within refractory myeloma. Whether it’s just to one or multiple different medicines, or if it’s more broad where we’re having a hard time getting a response with even different combinations.