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Living Well with Multiple Myeloma – Friendly Dieting

Friendly Dieting – Sifting Through Science vs. Hype

Living Well With Multiple Myeloma – Friendly Dieting from Patient Empowerment Network on Vimeo.

In this myeloma-friendly dieting webinar with Julie Langford of Cancer Dietitian (Cancer Services) and Danny Parker of MultipleMyelomaBlog.com , they lead a discussion focused on how to eat when you are living with myeloma. Both help us understand what “bad and good foods” are and what overall lifestyle changes may be helpful in allowing you to live a full life with myeloma.

Living Well with Multiple Myeloma – Staying in Tip Top Shape

Exercising With Multiple Myeloma – Staying in Tip Top Shape

Living Well With Multiple Myeloma from Patient Empowerment Network on Vimeo.

How do you exercise if you have myeloma? Should myeloma patients avoid exercise all together? Melanie House, a physical therapist at the University of Iowa Hospitals and Clinics specializing in prescribing exercise, shares how and when to exercise with myeloma.  Jim Bond, aka James Bond, a 25-year, stage III myeloma survivor and Matt Goldman, a 7-year myeloma survivor, shares how they stay active trough cycling and how they challenge themselves to stay in tip-top shape.

Myeloma Patient Cafe® August 2017 – Self-Education and Empowerment

Patient Cafe® Multiple Myeloma – August 2017 from Patient Empowerment Network on Vimeo.

In this session of the Myeloma Patient Cafe®, a group of myeloma patients discuss self-education and empowerment.

Myeloma Patient Cafe® July 2017 – What Life is Like with Myeloma

Patient Cafe® Multiple Myeloma – July 2017 from Patient Empowerment Network on Vimeo.

In this session of the Patient Cafe®, a group of myeloma patients will discuss what life is like now that they are living with myeloma.

How Can Myeloma Patients Advocate For Themselves?

How can myeloma patients advocate for themselves? This Patient Café® was hosted by Jack Aiello, Patient Power host and advocate. He was joined by four different myeloma patients. Together, they share their stories, insights, and advice to become a self-advocates. Check out the full video below to hear from these patient experts.

How Can Myeloma Patients Advocate For Themselves? from Patient Empowerment Network on Vimeo.

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.

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.

Cindy Chmielewski Talks About Clinical Trials

Cindy Chmielewski, a leader in multiple myeloma patient activism and empowerment, talks with Carol Preston about what she has learned about clinical trials from being a multiple myeloma patient. Cindy believes that patients should seriously consider trials as an excellent treatment option and should discuss the availability of trials with their medical team. Carol and Cindy discuss tips on how to become a more informed patient through multiple platform research, such as online resources, social media or attending seminars.

Watch the full video below to learn more from a forefront member in patient education advocacy.

Cindy Chmielewski talks about clinical trials from Patient Empowerment Network on Vimeo.

Knocking Down Barriers to Accrual Using Social Media

Social Media uses powerful tools that can be used to dispel myths about clinical trials and to engage patients.

(Editor’s Note: Cindy Chmielewski, a myeloma patient, member of the PEN Advisory Board, and longtime patient advocate and teacher, presented a poster exhibit at the recent 2015 AACR conference on the use of social media for clinical trial accrual. Below is the poster description and an image of the poster)

Multiple Myeloma is an INCURABLE cancer of plasma cells. Many researchers feel that a cure can be found in the near future if clinical trials which test their hypotheses are properly designed, fully enrolled and completed in a timely fashion. As a myeloma patient it is frustrating to hear that less than 5 % percent of adult cancer patients participate in clinical trials and that 24.4% of cancer clinical trials close early because they fail to complete enrollment. As an independent patient advocate I have made it my mission to use Social Media to knock down barriers to trial accrual.  Social Media provides powerful tools such as online patient communities, Twitter, podcasts, Facebook, patient blogs, and YouTube that can be used to dispel myths about clinical trials, excite the population about the successes of recent research and educate potential participants and physicians about clinical trial options.  According to the Center for Information and Study on Clinical Research Participation (CISCRP) an overwhelming majority of people (77%), say that they would consider getting involved in an appropriate clinical research study if asked. Since many doctors aren’t asking patients to participate in clinical trials patients need to be educated and empowered to question their doctors about ALL their treatment options, including trial participation. Social Media has helped me evolve from a passive by-stander in my medical care to an engaged partner and it is my mission to use it to help fellow patients.

Social Media and Clinical Trial Accrual

Diary From a Female Myeloma Patient

Female – 53 years old

Diagnosed July 2014

 

My thoughts on Myeloma – June 2015

It started with an unexplainable pain in my back that spread to my chest – to my surprise I was Myeloma_Diarydiagnosed with multiple myeloma a short time later.  I don’t have the symptoms I’ve read about and I am thankful for this and any delay in what might come.  So, now I’m in a club I never thought I’d join – the cancer club. I do find comfort n connecting with those in a similar situation and I have learned from each of you.  It’s the simplified meaning of our cancer that is expressed through personal experiences that brings me clarity and peace.  I’ve been stable and we’re holding off on treatment for now.  It’s a look into the future with the promise of new and upcoming treatments so we wait.  As a cancer patient I worry often about every ache and pain. Does it mean my body is failing me…is the cancer traveling somewhere new?  Paranoia is much like cancer…they travel hand in hand tormenting the patient and their families. Lately I’ve been able to free my mind of what the future holds. I long for total freedom from the one thing I hate more than anything….I despise you cancer!  Today I will not think about you! You don’t deserve my thoughts. I challenge anyone reading this to do the same. There will be good days and bad days but any day we have to share our experience is a great day!

Multiple Myeloma Town Meeting at MD Anderson: Takeaways

Myeloma Meeting Nov 2

I’ve just returned from MD Anderson in Houston where I facilitated a Multiple Myeloma (MM) forum put on by the Patient Empowerment Network (PEN). The program was titled “2014: Accelerating Progress in Myeloma and What it Means for You” and attended by 225 MM patients and caregivers plus another 40 folks watching live on-line.

Drs. Robert Orlowski (MD Anderson), Gareth Morgan & Faith Davies (both at the University of Arkansas) clearly explained what MM is (including MGUS and Smoldering) and its symptoms.  Did you know in just the last month, ultra high risk Smoldering MM, which is asymptomatic and treated as “watch & wait” has been reclassified as actual Multiple Myeloma where patients should consider treatment?  These doctors summarized current treatments as well as clinical trials for new drugs and protocols, focusing on new monoclonocal antibodies as well as future patient biology testing enabling more precise treatment recommendations for a given patient.

Later in the day, our panel of doctors was joined by a myeloma nurse practitioner, social worker, and 2 patients who all shared their thoughts on how patients can monitor and plan their treatments while living well with our cancer.  We all have varying degrees of MM symptoms and treatment side effects which need to be managed by our health team, perhaps the most important member being a patient’s caregiver.

In addition to breakout meetings where patients met each other and shared experiences while asking questions, many of which were addressed by the panel, the final hour of the forum was spent answering questions from both the live and on-line audience.  Sample questions included maintenance recommendations after transplants, length of bisphosphonate (aredia or zometa) usage, and the mental issues of testing every 2 months for smoldering without starting treatment. These are difficult questions without precise answers but our doctors and other panelist shared their experiences and advice.

I have no doubt (because many told me afterwards) that this program provided a wonderful education for both myeloma patients and their caregivers.  As a 20-year survivor of MM myself, I am proud to be associated with PEN and help make such a program possible.

(The following is from the editor)

This meeting was the first PEN meeting that was live streamed using Zoom.us technology. I registered for the streaming and watched the Houston meeting from my couch in Charlottesville, Virginia. The audio and video were very clear. The video was so clear that many of the photos below were the result of screen shots that I took while streaming. I loved watching this meeting online. The reason is, that I have been to these meetings and I have talked to the participants. The patients and their families so enjoy the meetings and so enjoy hearing the experts speak and listening to the patient stories and the patient questions. How wonderful that now we have a chance for more patients to benefit from these meetings. Many patients live too far to attend these meetings in person. Many are homebound or too sick to travel. Live streaming the meetings will give those patients a chance to watch the event.

 

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