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Myeloma Expert Roundtable

From the annual American Society of Hematology (#ASH16) Conference, Dr. Robert Orlowski leads a panel discussion with four  Myeloma experts about what’s new and exciting in the field of Myeloma. This panel included:

  • David E. Avignan, MD, Associate Professor, Medicine, Harvard Medical School, Active Staff, Hematology-Oncology, Beth Israel Deaconess Medical Center
  • Jennifer Ahlstrom, Patient Advocate and Founder of Myeloma Crowd
  • Noopur Raje, MD, Director, Center for Multiple Myeloma Massachusetts General Hospital
  • Gareth Morgan, MD, PhD, FRCP, FRCPath, Director of the Myeloma Institute for Research and Therapy, The UAMS Myeloma Institute

Check out the full video below to hear from four Myeloma experts:

Myeloma Expert Roundtable from Patient Empowerment Network on Vimeo.

Getting A MPN Specialist’s Opinion

Interview with Olatoyosi Odenike, MD, Associate Professor of Medicine University of Chicago Medical Center and Srdan Verstovsek, MD, PhD, Professor, Department of Leukemia, Division of Cancer Medicine The University of Texas MD Anderson Cancer Center

From the recent MPN Town Meeting, Dr. Verstovsek and Dr. Odenike are asked about why MPN patients should get second, specialist opinions and how it can benefits patients. Check out the full video below to hear from these two MPN experts.

Getting A MPN Specialist’s Opinion? from Patient Empowerment Network on Vimeo.

Cancer Diagnosis – How and Who Do You Tell?

Interview with MPN patients and patient advocates, Lorraine and Karen

At the recent MPN Town Meeting, Andrew Schorr interviews patient advocate, Lorraine about how to explain and communicate with loved ones after a cancer diagnosis. He asks, What do you say? How do you handle it? Who do you tell? What do you tell your kids? Watch the full video below to hear Lorraine and Karen’s answers.

Cancer Diagnosis – How and Who Do You Tell? from Patient Empowerment Network on Vimeo.

Spotlight on: MPN Cancer Connection (MPN-CC)

Interview with David Wallace, publisher of PVReporter, founder of MPN Cancer Connection (MPN-CC), and PEN Advisory Board Member. In this interview, David explains why he started a non-profit, his goals, and some of the obstacles he has faced so far.

Kara:

Why did you decide to create MPN Cancer Connection (MPN-CC)?

David:

MPN Cancer Connection was launched as a non-profit in 2015 to provide a channel for generating financial support for PV Reporter. To fully advance our cause, primarily patient education and advocacy and make it sustainable, financial support would be a necessity. The website and associated expenses were run 98% out of pocket for 2 ½ years. I also felt it was important to promote MPN awareness as a cancer, providing patients benefits and programs that would not otherwise be available.

Kara:

How did you decide on the non-profit route?

David:

The non-profit route looked like the best logical solution to our financial issues. I had several potential donors, mention they would be willing to help out if the benefits of a tax deductible donation were available. I was also more comfortable pursuing sponsorship, partnerships and other projects by going the 501©(3) route. Somehow, I believed if I chose this direction, it would lead to success. Early indications are moving the needle in the green zone.

Kara:

When starting PV Reporter and MPN-CC, what were your goals for both organizations?

David:

That’s a great question. For PV Reporter I had several goals in mind. First of all I wanted to create a website with “easy access” to pertinent information on MPN’s, in an easy to navigate format. The website was built around the “custom MPN search engine,” MPN Search. I wanted the articles to be “patient friendly,” easy to read and understand without having to search for definitions to complex terminology. I also discovered an opportunity to “share the pulse” on topics of interest I found frequently discussed in the Facebook forums. I had no idea PV Reporter would take off like it has running into the 3rd year in August 2016.

The Five Year Vision for MPN-CC can be found on our website.

Kara:

What are some of the obstacles you faced when starting MPN-CC?

David:

The biggest obstacles were funding and “know how” to start a non-profit. My first call was to an attorney who wanted $5000 to assist on the paperwork. That was rather dejecting (that’s putting it mildly), but I kept looking for affordable assistance. I was fortunate to find a super nice lady, Julie, who runs a nonprofit consulting firm, profiled in one of our small local newspapers. After our first meeting at a nearby coffee shop, I knew she was the mentor I needed. She believed in me, my cause and understood the benefit I was providing patients through PV Reporter. Without her guidance in walking me through the tedious paperwork process, I might have thrown in the towel.

Over the last year and half, I attended two non-profit conferences. This offered a great learning experience and opportunity to network. Learning to run a non-profit while keeping PV Reporter on the leading edge has been a major challenge.

Kara:

How do you fund your non-profit?

David:

A very loyal PV Reporter reader from the early days came in with a generous donation that helped cover some of my initial costs and provided the motivation I needed to know I was on the right path. Several friends/patients have also shown their support as well. I am most appreciative, as they were the cornerstone that provided the means to keep my projects moving forward.

In July 2016, I landed an advertising sponsorship on PV Reporter that should ease the funding burden for a while, allowing me to create new patient resources and programs. I also intend to seek additional sponsors, grant opportunities and other sources of funding.

Kara:

What have I learned from creating PV Reporter and MPN-CC?

David:

First of all, I found myself in a role that was totally new as a patient leader/advocate. I realized how much I learned from other patients over the years and how important it is to give back to the MPN community.

Cultivating a supportive core group of fellow patients and partners were instrumental to the success of PV Reporter and MPN-CC.

Kara:

What are your near-term goals?

David:

I have a number of them; the most basic is continued existence of both organizations. One of the most important goals is for me to connect with knowledgeable individuals in the non-profit space in order to outsource certain responsibilities. Bookkeeping was the first area I took on help with. Lord knows, I have enough to learn and becoming a QuickBooks expert was not high on my list.

I recently started a project with a non-profit consultant who is helping me put the pieces in place for growth and sustainability. If things go according to plan, I believe we will accomplish our goals and be able to expand our reach.

Coping With a CLL Diagnosis

Interview with Tina Sapienza, LMSW, OSW-C, Oncology Social Worker Columbia University Medical Center and Nicole Lamanna, MD, Associate Clinical Professor of Medicine Columbia University Medical Center

Andrew Schorr interviews a panel of CLL experts about coping with a new diagnosis and all the feelings associated with that. Watch the full video below to hear from the CLL experts.

Coping With a CLL Diagnosis from Patient Empowerment Network on Vimeo.

Encouraging The Conversation

Interview with Nicole Lamanna, MD, Associate Clinical Professor of Medicine Columbia University Medical Center

Esther Schorr, care partner and patient advocate, interviews Dr. Lamanna about how patients can best interact with their health care professionals to get the best treatment they deserve. The pair then discuss what the best approach for patients who do not live near a CLL specialist, such as Dr. Lamanna. Check out the full video below to hear from a CLL specialist.

Encouraging The Conversation from Patient Empowerment Network on Vimeo.

Living Well With CLL

Interview with Patient Advocate, Jennifer Abraham

After her third cancer diagnosis of Chronic Lymphocytic Leukemia (CLL), Jennifer decided she and her family were going to make the most of everything. She says her life is better than it has ever been and has learn to just be and live. Jennifer considers her cancer diagnoses almost a blessing because it pushed her to do things she maybe wouldn’t have done. Check out the full video below to hear more from Jennifer.

 

Living Well WIth CLL from Patient Empowerment Network on Vimeo.

Coping With Anxiety and Depression

An expert panel discusses different methods to cope with anxiety and depression through all the phases of a cancer journey. Jane Williams, MSN, RN, FNP, says one of the best ways is to communicate openly with your healthcare team and loved ones. Letting them know how you feel and what you need can lead to you feeling better. Remember that you’re not alone in your journey, and sharing your emotions can help you figure out what works best for you, whether that be running, meditating, etc. Watch the full video below for all the panel’s advice on coping with anxiety and depression.

Coping With Anxiety and Depression from Patient Empowerment Network on Vimeo.

Impatient Patients

The recent ASH (American Society of Hematology) meeting in Orlando focused on a host of new therapies for blood cancers and possible combinations of these new drugs that could forge paths to cures.

Leukemia, myeloma and lymphoma patients are grateful for the research and dedication from medical experts from around the globe.  But as I learned from talking to several, patients also are impatient. So they are taking action to move the research needle faster toward blood cancer cures.

David Wallace

David Wallace

David Wallace was diagnosed in 2009 with polycythemia Vera, an MPN or myloproliferative neoplasm.  He struggled to find precise, relevant information about PV, so he launched PV Reporter.  PV Reporter started as a hobby but has grown into a full-time endeavor.  David is educating thousands of patients and care partners about PV, namely that indeed it IS a cancer.  He said many patients are told PV is not a cancer, and they miss the opportunity to participate in clinical trials as well as programs to help fund peripheral needs such as transportation to and from the trial site.  David recently launched <mpncancerconnection.org> to complement PV Reporter.  David’s message:  If you have doubts about your diagnosis, find another doctor now, at a major research center if possible!

Then there is a Jenny Ahlstrom.  Jenny’s been a multiple myeloma patient since 2010, nearly two years after her 6th child was born.  Jenny founded <myelomacrowd.org> which not only educates MM patients on the latest advances, but also is raising money for research to treat high risk myeloma. Jenny’s message to patients: Toward that end, Jenny has raised more than $150,000 (!) toward a goal of 1/2 million dollars (!) to fund two game-changing projects which harness the body’s immune system to knock back the disease.  Jenny’s message to us patients:  We patients CAN and SHOULD accelerate the pace of research toward a cure.  Want to do more than wait? Go to <myelomacrowd.org> to fund the research that will save lives.

Pat Killingsworth with Carol Preston

Pat Killingsworth with Carol Preston

Pat Killingsworth shouldn’t be alive.  Pat over nine years burned through multiple myeloma therapies faster than fire burns through paper.  A very somber Pat told me at ASH 2014 that he’d reached the end of the treatment road.  And yet there he was at ASH 2015-bald, thin, wearing a mask and SMILING after not one but two autologous (using his own stem cells) transplants! Read Pat’s story at <myelomablog.com>  Pat became ill after this year’s ASH, probably too many germs to combat at the Orlando Convention Center, but then a ‘miracle.’ The transplants worked. Pat was declared myeloma-free.  Pat is the model for never giving up, never taking ‘no’ for an answer and pushing back hard against adversity through education and action.  His will to live far outran the potentially lethal ravages of multiple myeloma.

Finally, Jack Aiello.  Many of you know Jack as a 21-year multiple myeloma survivor.  Through failed therapies, transplants and more treatments, Jack beat the odds. He survived MM when most patients died from it. Jack has turned his good fortune into activism.  He constantly learns about new therapies and, through the International Multiple Myeloma Foundation, educates patients to fight their disease.  Why work so hard for others when you’ve already beaten the disease?

"When I was dx'd, I wondered if I'd be alive to see my kids graduate from high school. And now I have 4 grandkids. What could be better?"

“When I was dx’d, I wondered if I’d be alive to see my kids graduate from high school. And now I have 4 grandkids. What could be better?”

These four delicious grandkids, including the newest Aiello born this month, came into Jack’s life long after his diagnosis.  Imagine if Jack hadn’t fought through the very difficult trials of treatment?

These four stories are but a smattering among hundreds – from patients who aren’t treading water and simply hoping for a cure.  They are the activists who are partnering with researchers to make it happen.  In their and our lifetimes.

Carol Preston was diagnosed with CLL in 2006, in remission for 5 1/2 years.

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