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Myeloma Voices

"Keep Smiling" my friend!

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Pat Killingsworth was a fighter, an advocate, someone who always spoke his mind, and was always there to help others.   I'll mostly remember Pat as a friend. 

Gerry Landy, co-leader of the Stillwater, MN Myeloma Support group shared with me the following:  

"As you know, Pat was a very active member of the Stillwater, MN support group before he moved to Florida.  In fact he would pepper my wife, Annie, with questions about blog writing, website editing and self publishing.  We knew he was up to something but I don't think even he had any inkling as to how popular (and influential) he would become in the Myeloma community.  It was an honor to know him and a pleasure to see his success.   As was the case with the passing of Mike Katz, it's up to the rest of us to honer him by carrying on with his work."

The IMF helped Pat and his co-founders to start the Nature Coast, Florida myeloma support group in 2010.   Pat was a quick learner and even back then wanted to help as many people as possible.  We invited Pat to come to the American Society of Hematology meetings in San Diego in 2011, and although his back hurt every day, he soldiered on and attended as many oral and poster sessions as possible so he could bring the information back to other patients and caregivers.  Pat came to ASH with the IMF in 2011 (San Diego), 2012 (Atlanta), and 2013 (New Orleans).  Each ASH program was chock full of hope that Pat reported back by blogging and sharing his observations and opinion.

In 2012 Pat came with the IMF to the annual Support Group Leader Summit.  He was a 1st timer there, and looking back at a blog he wrote, I'd like to share a quote from our dear friend:

"Sure, the primary goal of the Support Group Leader Summit was to bring back lots of ideas and information to our respective support groups.  But in one short weekend, I was able to turn a dozen former acquaintances--along with more than twice that many survivors, caregivers and IMF team members that I just met--into at I hope will be life-long friends."

Here's Pat's full blog from the Summit: 

http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/2012/08/this-years-support-group-leader-summit-in-dallas-truly-changed-my-life.html

Pat was tireless, always asking questions and sharing his knowledge.  His good work helped so many myeloma patients and caregivers.  Rest in Peace my friend, knowing that your life mattered.

"Keep Smiling" my friend!


Robin Tuohy

I met Mike Katz in 1993, when he came to the first ever Patient & Family Seminar. He walked over and introduced himself to me and told me that he and my late husband Brian Novis had spoken on the phone. I was so surprised and touched that this man took the time to fly all the way to Los Angeles to tell me about that conversation. I didn't realize that he, too, had myeloma because he was young, handsome and looked just great. We became great friends.

Mike Katz was many things: hero, friend, IMF board member, opera enthusiast, family man, lover of roller coasters, possessor of a great sense of humor, intolerant of BS, and champion extraordinaire for myeloma patients. Mike was laid to rest on Monday after waging a 25-year battle against myeloma.

SusieMike.pngFrom the moment I met Mike, my life changed--as did that of patients all over the world. Mike was a force to be reckoned with, and it was always best to be on the side he fought for. He quickly realized the value of having patients communicate with one another, share experiences, share information, and share their fears, so they could overcome them. Then they could share hope, too. Mike was also a computer geek who built the IMF website, developed our database and provided a key portal for patients and caregivers to access information and support. He did everything and more for the IMF and the entire myeloma community, patients first and foremost, but he also worked closely with doctors and nurses. In other words there was no area that was off limits to Mike, and we all benefited from his passion and his tenacity.

A survivor of both multiple myeloma and rectal cancer, Mike showed us all how to live with life-threatening illness. "I've always chosen to live my life as if I didn't have cancer," he once said. "I just face forward and try to do everything I want to do, working around symptoms and treatment side effects." For 25 years, Mike worked as a patient advocate across a broad spectrum of cancers, serving as Chair of the Patient Representatives Committee at the Eastern Cooperative Oncology Group (ECOG), Chair of the NCI's Director's Consumer Liaison Group, a Patient Consultant for the U.S. Food and Drug Administration (FDA), and on the Association of Cancer Online Resources (ACOR).

He very passionately advocated to lower the standard dose of dexamethasone, which at that time was 40 mg for four consecutive days--a high dose of dexamethasone that today, thankfully, no patient has to endure. Mike worked with the chair of the ECOG Myeloma Committee and proposed the idea of a head-to-head trial of standard dose and low-dose dexamethasone. To no one's surprise, the patients on low-dose dexamethasone did much better and didn't have to endure the horrible side effects. And many a marriage was saved!

Mike was also the principal driver behind design and implementation of the comprehensive Myeloma Manager Personal Care Assistant application in 2008. This application is designed to help myeloma patients and caregivers manage their care, and can be downloaded free of charge on the IMF website.

At major cancer conferences around the world, Mike recorded video interviews with leading physicians, which were posted on the IMF website and other social media outlets for patients to view directly.

Mike also helped establish a link between bisphosphonates and osteonecrosis of the jaw (ONJ), and he helped change National Cancer Institute (NCI) policies regarding institutional review boards that removed serious delays in initiating clinical trials.

In 2014, the American Society of Clinical Oncology (ASCO) recognized Mike with the 2014 Partners in Progress Award for his exceptional achievements, outstanding work, and dedication as a myeloma advocate. "Working with the IMF and others to help patients and caregivers and to advance myeloma research is an important and an incredibly rewarding part of my life. I am grateful to the community and to ASCO for this very special honor," Mike said at the time.

It is we who are grateful to have known Mike and to have been the beneficiaries of his wisdom, support, keen mind, problem-solving skills, honesty, and sharp wit. Mike loved to laugh and we had many laughs over the years as we traveled the world together. He was my dear, dear friend and I just can't imagine life without him.

Our hearts go out to his wonderful wife, Susie, their three sons Jason, Jeffrey and Jonathan, and their families, which now include many grandchildren.

Mike, we miss you, we love you and will remember you always.


Susie Novis
President
International Myeloma Foundation

21 Comments

Beautiful tribute to Mike, Susie. He was one of a kind. He did so much for so many people. Ken and I are sending our sympathy and prayers to Mike's family and the IMF family. Thank you Mike.

What a wonderful inspiration to MM patients, I only wish I could have met him!

Susie, thank you for your moving and love-filled tribute to a man for all seasons. Mike Katz's energy and appearances at the
seminars are memorable. He gave us hope and laughter in the midst of our confusion. His presence made us more eager to learn about multiple myeloma, to live with this cancer and to enjoy each day. Diagnosed with MGUS in 1994 and MM in December,2001,
I have celebrated life every day. Thanks, Mike for the inspiration.

Mike was such an inspiration and I learned from his presentations at several IMF Seminars, not to live life as a cancer patient but to look to the future with confidence. He inspired me and reinspired me every time I was fortunate to hear him speak!
He will be sorely missed by all of MM patients.

I am so sad to learn of Mike's passing. I attend a few support group meetings at St. Vincents when I was newly diagnosed and was always amazed at the amount of knowledge Mike possessed. He was so kind and gave me hope. I have spoken about him many times over the years. My heart goes out to his family and friends.

Mike was an inspiration to ALL. I always read everything he posted. His battle was faught with dignity and his many contributions to the lives of cancer survivors are outstanding. My deepest sympathies to his family. He will be misses by ALL! Joan Beauchamp, MM, 9 years

Thank you, Mike. Thank you for returning my call that late evening, in January 2006. You generously provided me with your connections at Saint Vincent's Hospital. This lovely gift was the hope we so desperately needed.

At the time my mother was given 3-6 months to live, we instead were blessed with 4 years.

I am ETERNALLY thankful.

When I discovered I had Mgus I went to st Vincent pne15th street in N Y I met mike there . He headed our group and gave us all hope. He was a wonderful person and will be very missed. Shirley Lustig

When I was diagnosed in 1999, the term multiple myeloma was foreign to me, having never heard it before When exploring the Internet, I encountered Mike who was a life saver to me. He was patient explaining terms and accomplishments at that time, he will always have a special place in my heart. He was a rare, thoughtful, very intelligent, kind, hard-working person.

We missed Mike at the Patient Seminar in SF this spring--sad to hear of his passing. He was a great advocate for just living your life, in spite of MM and all the treatments we go through...

Great tribute, Susie. I will add that the portal Mike developed for patient and caregiver support included the Listserv which he closely monitored for years and more recently smartpatient.com which he also closely monitored and offered great advice. These chat sites provide(d) an invaluable way for patients and caregivers to exchange critical information such as good myeloma specialists in specific geographic areas, how patients are being cared for with various providers around the country and sometimes the world. They are lifelines for the myeloma community. He gave a lot of information on something I posted on smartpatient as recently as March 12 so he was still helping the myeloma community to the end.

There are a lot of expressions of gratitude, tributes and condolences on the smartpatient.com website.

I've been to more than a handful of Patient Conferences and witnessed Mike's presentations and cheerleading in quite a few of them. So I was one of the many whom Mike inspired and it grieves me to hear of this loss. I'm going on my tenth year (in August) of my myeloma diagnosis and I'm in awe of how much longer Mike endured the disease and the horrible suffering the chemo meds cause. I often get to the point of contemplating giving up. I wonder if he had those moments too, but -- like me -- decided to persevere. Whether or not he despaired, he definitely persevered. And used his special skills and talents and wisdom to keep the light shining for many, many others. And I hope there's a way Mike can have known how much I appreciated his unique drive to live and thrive and how much I appreciated his graciously sharing his determination to live fully and well with us all. There's no replacing him. Thank you as well, Susie, for the beautiful and touching tribute, and for letting us know of his death. While I'm waxing appreciative, let me say that I appreciate your similar spirit, as well as your wonderful husband's, in keeping hope alive for me and others, and for how matter-of-fact your generosity -- and Brian's -- feels to me. As did Mike's.

What a great guy he was. The Myeloma Manager is a Godsend!!

I am so very sad at hearing this news, I wasn't aware he was not doing well, trying to read every correspondence he had, he was so knowledgeable and being so new to this disease, 4 years, he was a great inspiration, and an even greater hope. I pray for the family to find peace in the knowledge that he was admired and loved by many who never had the honor to meet him. He has done so much for this community, a great man and surely will be missed.

Along with everything listed above (I had no idea), I will always be grateful to him for demonstrating that a diagnosis of myeloma need not be the end of my retirement travel dreams.

Susie,

I echo your sentiments about Mike. He really was a hero to all Myeloma patients everywhere. I knew him for many years and also appreciated his outlook on dealing with his disease. He will truly be missed by all who knew him. The Myeloma community will be at a loss without him.

My condolences go out to his entire family.

Marilyn Alexander
Philadelphia Multiple Myeloma Networking Group

He was truly an inspiration. His polite and respectful mannerism was adorned with an amazing inner strength. I feel honored to have met him and gotten to know him.
Asher

What a beautiful tribute, Susie. Mike will be missed terribly in our tight-knit MM community.

Mike was an awesome individual that had a huge effect on patients and caregivers alike at the many Myeloma functions that he participated in. Jerry and I had a great respect for him and his incredible knowledge of Myeloma and ways to help everyone with handling this disease. Thanks, Mike for being you and being willing to reach out to everyone else and being an great example of how to share the hope of beating Multiple Myeloma. Marcia Sawyer

Thank you for sharing your personal story of Mike, Susie. You both were pioneers in the field of myeloma. He will be remembered fondly by many.

I was fortunate to attend an IMF patient and family seminar in Chicago in 2001 where Mike was a presenter. The other patient speaker that day was Judy Goldman. I had been officially diagnosed in 1998 and this was my second seminar. For me that weekend was a critical turning point. Mike and Judy gave me hope that just maybe I could live long enough to experience the births of many grandchildren and that I could establish goals and make plans. Because of them I knew that I truly did have a future. Up to that point I had not yet sought out the advice of an MM specialist but Mike and Judy clarified for me that this should be my first priority. I had been researching the list of those who specialized in Myeloma and their medical facilities, but I lived half way between Indianapolis and Cincinnati and at that time there were no MM docs in either city. I was stalling trying to figure out if I should head south or north or maybe way out west. That weekend took me from floundering around to a well defined and life-saving path. Drs. Seema Singhal and Jayesh Mehta were presenters and were in the process of establishing a Myeloma department at Northwestern Medical Foundation in Chicago, my hometown. Over the years I have been fortunate to hear Mike give his
inspiring presentations and to watch him interact with patients. He was an angel among us, a very caring man and also attentive to those who needed his advice or help. I was in awe of the technology and ideas that he brought to the IMF and we patients to help us manage our condition. Because of Mike our medical partners began rethinking how to better manage dosing of our meds to prevent side effects that so robbed us of quality of life. And then I was amazed again when he developed the device that would allow we patients to provide feedback at IMF seminars that, in turn, MM researchers used to our advantage. Thank you, Mike. I don't think that we ever really talked, just exchanged pleasantries, but whenever plans were made to attend a seminar I would look for you. Always had to see if you were moving around as quickly as ever and as determined as ever and always with a smile....well except for those times when there was a techno glitch. But you always got it fixed, just like you helped "fix" so many of us. Blessings to your family and my hope is that the memories created by you and your family will sustain them in the years ahead. Such a legacy you have left for them and for us. Thank you.

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A Myeloma Patient Seminar, Italian Style

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More than 100 people gathered in the town of Udine, Italy last week for a lively and informative myeloma patient event hosted by the Italian blood cancer patient group AIL Pazienti (Associazione Italiana contro le Leucemie, Linfomi e Mieloma).

The Udine group is an extremely active chapter of the AIL, which has more than 400 volunteers working throughout the year organizing events, fundraising and raising awareness of multiple myeloma.

The April 18th event was led by Maria Grazia Santuz, President of AIL Udine, and Giuseppe Gioffre, the organization's chief administrator, and focused on educating myeloma patients and their loved ones. An impressive lineup of speakers was followed by lively Q&A sessions.

Included in the day's proceedings were presentations from Dr. Renato Zambello of  Padova, who spoke on myeloma therapies for the young; Dr. Filippo Gherlinzoni of Treviso, who addressed therapy options for elderly patients; Dr. Norbert Pescota of Bolzano, who spoke about treatment options; Dr. Fabio Barban of Udine, who spoke about putting patients at the center of the cure process; Vittorio Meneghini of Verona, who spoke on treatment options; Margherita Venturini of Udine, who covered the management of treatment side effects and supportive therapy; and Francesca Patriarca of Udine, who concluded the meeting by explaining new clinical trials, drug treatments and cellular therapy for multiple myeloma.

A poetry reading by actress Sonia Cossettini served as a lovely antidote to the day's strong focus on myeloma treatment, education and awareness. As with any successful program of this kind, the AIL event was a highly collaborative, drawing speakers from across Italy to share their expertise and insights for the benefit of the multiple myeloma patients. Special thanks to Paola Angaroni and Melania Quattrociocchi of AIL Rome for their support.

Nadia Elkebir
IMF Director of Europe and the Middle East

Dr. Renato Zambello

Dr. Filippo Gherlinzoni

Dr. Norbert Pescosta

Dr. Vittorio Meneghini

Dr. Francesca Patriarca

Maria Grazia Santuz

Fabio Barban

Renato Fanin

Nadia Elkebir, IMF

AIL Volunteers

Guiseppe & Nadia

Paola & Melania


Photos courtesy : Dario Paoli 

 

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Myeloma can be a stressful diagnosis - not only for patients but also their loved ones. Graphic novelist Sarita Johnson learned this first-hand in 2010 when her partner Susan was diagnosed with the disease.

Sarita and Susan had just spent a month on vacation in New Mexico, exploring what life would be like in the small town where they hoped to retire. Susan was experiencing mysterious pain in her back and numbness in her legs. It was so bad, they cut the trip short. Shortly thereafter she was diagnosed with cancer. The news was "devastating," Sarita said. While Susan went in for tests and treatments, Sarita turned to the one thing she knew best: art. 

"While hanging out in the hospital with her and racked with anxiety, I decided that documenting the experience would be good therapy for me," Sarita said.

Sarita began sketching her experiences, chronicling the hospital visits, the tests, the sleepless nights, the worry, and the love - all in a new and unique graphic novel she titled A Donkey in Albany: A Year with Multiple Myeloma. The title comes from an image Sarita said calmed her in the earlier days of diagnosis, when the future seemed bleak. The story spans the first year after Susan's diagnosis, from diagnosis to steam cell transplant.

"I remember saying to myself, 'Gosh, I wish I could just ride a donkey along an empty desert highway, with the sun painting everything warm,'" Sarita said.

"I have a chapter called Myeloma 101 in which I explain in the simplest and clearest of terms what the disease is. It's one of my favorite chapters because not only is it visually enjoyable, but also it helped clarify for me what exactly was going on with Susan. The real focus of the book is actually my experience as a caregiver and how I found strength such a harrowing year," Sarita said.

Sarita has published her comic, page by page, on her blog (http://www.donkeyinalbany.com) with the hope that it will help other myeloma patients, whether they are looking for an escape or want to learn more about the disease by way of one family's myeloma experience. Sarita welcomes comments and feedback from other myeloma patients and their family members. She also hopes a publisher will soon pick up the title so it can touch and inspire even more lives.

"I want to make sure that this particular story gets out and read as soon as possible," Sarita said. "There is still no cure for myeloma, which means that families are still suffering because of it. So, I think it could be helpful and validating to others who are also going through this disease."

2 Comments

We are going through a similar journey. It is 'comforting' to know we are not alone. A comic strip is a 'refreshing' way of documenting a long, stressful and uncertain journey. Where can we get the complete work?

Good luck on your journey. You can find Sarita Johnson's wonderful story-in-progress here: http://www.donkeyinalbany.com/

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The first week of November 2014 saw the IMF co-hosting three Patient & Family Seminars in Norway and Denmark, where leaders from international patient associations came together with acclaimed speakers to discuss the latest in myeloma news and treatments. It was an opportunity for the IMF to make international patients aware of our resources and bring the global myeloma community even closer together. I had the pleasure of attending the meetings, and now you can follow along on my journey with this recap of events.

The Patient & Family Seminar in Trondheim, Norway kicked off on November 1st with Dr. Anders Waage of the Norwegian University of Science and Technology in Trondheim, moderating/translating and Dr. Angela Dispenzieri from Mayo Clinic leading a discussion on monitoring, potentially preventing, and treating complications of myeloma. New treatments for myeloma were also a hot topic during this meeting. The Norwegian patients really appreciated having a speaker from abroad come to their city to speak about myeloma. In fact, there was such a demand for attendance that the meeting actually hit capacity at almost 200 participants, and a few had to be turned away.

Other presentations delivered during the seminar included:

"Pain and Physical Activity with Myeloma," presented by Janne Anita Sundfær, RN
"Awareness and Coping," which was presented by Tone Hansen, Director, Henie Onstad Kunstsenter, Høvikodden. Norway. Tone is also the leader of Blodkreft Foreningen (the Norwegian patient association) and an excellent psychologist. Her talk was uplifting for both patient and caregivers.
"Clinical Studies in Norway for Patients Diagnosed with Myeloma" from Dr. Waage
"Learning and Mastery Groups for Patients Diagnosed with Myeloma," from Turid Almvik, RN
"Emotional and Physical Effects of Recurrence," presented by a Celgene representative

Though many of the aforementioned presentations were medical in nature, designed to educate the participants about various aspects and stages of myeloma, there was much room for individual patients to ask questions and share their stories, as well.

The Patient & Family Seminar truly brought together patients and medical professionals alike.

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On November 4th, a second Patient & Family Seminar was held, this time in Oslo, Norway, with 208 people in attendance. Some of the attendees were newly diagnosed patients who were participating in a meeting for the first time. As such, after Tone Hansen, the leader of the Norwegian Patient Association (Blodkreftforeningen) started the event, the first presentation was on the introduction of diagnosis. Dr. Nina Gulbrandsen, Professor and Chief Physician, Oslo University, Rikshospitalet, shared her expertise in the subject.

The other presentations in Oslo included Dr. Fredrik Schjesvold's "Current Treatment for Newly Diagnosed Pateints and Treatment at Recurrence," Tone Hansen's "Awareness and Coping," Celgene's "Emotional and Physical Effects of Recurrence," and Dr. Waage's "The Norwegian Research Center: Jebsen's Centre for Myeloma." Patient stories were also shared.

Following the second successful Patient & Family Seminar in Norway, I attended two physician meetings.

The following day in Oslo, Celgene held a physician meeting. Approximately 50 physicians took part, including some speakers who were part of the prior Patient & Family Seminar. Dr. Dispenzieri repeated her presentation of "Diagnosis and Treatment of Myeloma," which created a lively discussion during the Q&A section.

A physician meeting held at Odense University Hospital in Denmark followed the next day, on November 6th. This time, approximately 40 physicians attended, many of whom worked with Syddansk Universitet's Dr. Niels Abildgaard. This time, Dr. Dispenzieri presented "Virotherapy in Multiple Myeloma-- The Mayo Experience" and produced yet another lively discussion and exchange of information regarding Mayo Clinic's practices.

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The final event of the week, the Patient & Family Seminar in Middelfart, Denmark on November 7th, drew 210 participants in person but also included a virtual contingent, as the meetings were live-streamed to allow additional patients to sit in.

The attendees started the event by singing a beautiful biblical song, and then Ole Dalriis, Chairman of the Danish Myeloma Foreningen, and Bibi Moe opened the meeting by introducing the IMF, and I carried on by introducing the day's activities.

Dr. Abildgaard acted as moderator and translator for Dr. Dispenzieri, who presented "Monitoring and Management of Myeloma Treatment," which produced a lively discussion. The Danish patients were very educated about their disease, and their questions were thoughtfully formed.

The Patient & Family Seminars I attended in both Norway and Denmark provided supportive feedback and a large outpouring of gratitude toward the IMF. I am very happy to share that relationships are strong. It was a delight to work with both Blodkreftforeningen and the DMF, and I am already eagerly anticipating next year's events! We truly are One Myeloma Nation.

Nadia Elkebir
IMF Director of Europe and the Middle East

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The IMF Co-Hosts Patient & Family Seminar in Slovakia

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On October 3rd and 4th, in conjunction with Slovak Myeloma Society (SMS) & Patient Club, the myeloma patient association of Slovakia, the IMF co-hosted the second annual Slovak Patient & Family Seminar in Liptovsky Jan in the beautiful region of Low Tatras in northern Slovakia.

It was my pleasure to attend the seminar and have the opportunity to continue to expand the IMF's relationships with patient organizations throughout the world that share the common goal of supporting and improving life for myeloma patients.

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Mr. Hrianka Miroslav, a representative of SMS, moderated the seminar and did a fantastic job organizing a highly informative and enjoyable meeting. The seminar, which welcomed 130 patients, family members, and physicians from different cities across Slovakia, was a great success.

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The seminar began with a patient forum, which included an uplifting testimony from a Slovak myeloma patient who focused on the idea that "every day is a new beginning." This presentation was quite moving and was followed by presentations on activities of several myeloma patient associations in Central Europe. These included presentations from:

  • Ms. Alice Onderkova from CMG (Czech Myeloma Group) - Czech Republic
  • Ms. Kinga Kocemba from Carita - Poland
  • Ms. Margareta Bartosova & Mr. Hrianka Miroslav from SMS (Slovak Myeloma Society & Patient Club)

The second day of the Patient & Family Seminar began with my presentation. I shared an overview of the IMF, our mission, goals, achievements, and the IMF's international initiative: the Global Myeloma Alliance (GMA). Mr. Hrianka Miroslav, meeting organizer, is representing Slovakia in the GMA.

During my presentation, the IMF's message was well received and understood by the Slovak patients. I enjoyed sharing information about the resources and support the IMF provides to patients worldwide.

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Following my presentation, Dr. Roman Hajek of the Czech Republic shared information about new myeloma drugs, treatment side effects, and clinical trials. He also provided personal consultations for patients. The participants paid great attention to this crucial presentation.

One of the things I will take away from this seminar is an appreciation for the remarkable relationship between the Czech and Slovak people. These two countries used to be one, Czechoslovakia, until a political split happened smoothly in 1993. This peaceful divorce is still called the "Velvet Revolution." However, as independent as the countries are now, Czech and Slovak people have an excellent relationship and strongly support each other, which I have seen in their fight against myeloma. I could see this relationship in the very well received presentations from Dr. Hajek and the Czech Myeloma Group. It is an inspirational relationship that should be taken as a great example all over the world.

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Back to the seminar! Day two also featured the following interesting presentations: "Integrative Myeloma Treatment & Logotherapy" from Dr. Pavel Kotoucek of Homerton University Hospital in London; "Physiotherapy and Spa Treatment" from Dr. Eva Kmetyova of University Hospital in Bratislava; "From Diagnosis to Ambulatory Monitoring of the Disease" from Dr. Zdenka Stefanikova of University Hospital in Bratislava; and "the Art of Healthy Living, Separate Diet" from Prof. Katarina Horakova, DrSc, of Slovak Technical University in Bratislava.

I am very grateful to Mr. Hrianka Miroslav--who is a caregiver to his very brave wife Milada, who has been fighting myeloma for nine years--for organizing such an informative and enjoyable meeting. I am looking forward to attending the 2015 Slovak Patient & Family Seminar!

Nadia Elkebir
IMF Director of Europe and the Middle East

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Is it possible to get a copy of "the Art of Healthy Living, Separate Diet" from Prof. Katarina Horakova, DrSc, of Slovak Technical University in Bratislava?

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A Patient Reports on Her Experience Serving on the IRB Board

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"Sitting at the table I felt prepared. I knew the language they were speaking thanks to all the education the IMF has given me....The two hours flew by."

As I drove down the crowded highway on a rainy Thursday morning, I asked myself, "What did you get yourself into this time?"

I was headed for my first institutional review board (IRB) meeting as a board member. The traffic was horrendous and I felt overwhelmed. I thought about turning the car around and driving home.

But I had an important job to do. The primary responsibility of an IRB is to protect the rights and welfare of people participating in clinical research and to function as a kind of ethics committee focusing on what is right or wrong and what is desirable or undesirable.

To prepare for the meeting, I had reviewed 13 clinical protocols, informed consent forms (IFC), and other important documentation related to each proposed clinical research trial/study. My head was spinning. Would I be able to contribute significantly to the discussions about this important process?

Why Are IRBs Necessary?

Federal regulations require all proposals for research involving human subjects that receive support, directly or indirectly, from the federal government to be submitted for prior review to an IRB. Prior to the 20th century, research ethics were primarily governed by individual consciences and professional codes of conduct. But early in the 20th century it became evident that many research subjects were being abused and left uninformed. The Tuskegee syphilis study, the experimentation done by Nazi physicians during World War II in concentration camps, and the Milgram obedience experiment are some of the most notorious of these abuses. They resulted in the National Research Act of 1974 and the establishment of the ethical principles of the Belmont Report, which guide the actions of IRBs.

As I approached the parking garage on that dismal Thursday morning I gave myself a much-needed pep talk. I know it is always important to hear the patient's voice, but I was questioning myself. Will I be able to provide the patient's perspective? Will I speak up or be intimidated by the doctors and other scientific board members? Will the questions I ask and the concerns I pose be taken seriously? I was the "unaffiliated, unscientific" member of the board.  And none of the protocols I reviewed had anything to do with myeloma--a subject I felt comfortable discussing.

Taking a Seat at the Table

I was greeted warmly as I entered the meeting room, and invited to take a seat at the table. When I had previously visited to observe the IRB, I sat in the back of the room. As soon as a quorum was present, we began our discussions.

Sitting at the table I felt prepared. I knew the language they were speaking thanks to all the education the IMF has given me. I just didn't know the specific drugs that were being researched. I felt comfortable participating in the meeting. The two hours flew by.

As I entered the elevator to return to my car, the hematologist/oncologist who chaired the IRB pulled me aside and thanked me. It is very important to the IRB process, he said, to see things through the eyes of a patient, and he added that the other "affiliated, scientific" members really appreciated my participation. I guess they did take me seriously. I didn't even notice the traffic driving home.

I will have a larger role as a secondary reviewer (reviewing an informed consent form and presenting recommendations to the entire board) for one of the protocols that will be on October's agenda. Once again I know I will be nervous, but I am up to the challenge. I encourage anyone who has an interest in the research process to contact your local IRB office and get involved. You will be truly appreciated.

Cynthia Chmielewski

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The IMF Strengthens International Relationships in Europe

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The IMF continued to strengthen its international relationships with patients, advocacy groups, and biopharmaceutical companies focusing on myeloma research with meetings in Europe this month.

On September 5th and 6th, the IMF, in conjunction with Czech Myeloma Group Foundation and KPMM (Klub Pacientu Mnohocetny Myelom) hosted a Patient & Family Seminar in Lazne Belhorad, Czech Republic.

I attended the seminar and shared with the more than 110 patients, family members, and physicians in attendance information about the resources and support the IMF provides to patients worldwide.

The meeting marked a special occasion for KPMM - the organization's 10th anniversary. The two-day seminar opened with a well-received video from IMF President Susie Novis congratulating KPMM on its success over the past 10 years.

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The seminar was educational, lively, and enjoyable for all who attended thanks to the tremendous hard work and professionalism of Iveta Mareshova and Alice Onderkova of KPMM. From the medical presentations and patient interactions to the beautiful location of the Tree of Life Resort, complete with a lake, the meeting was a huge success.

The first evening of the seminar also welcomed lively local entertainers: a magician and ballroom dancers. The entertainment and welcoming atmosphere put patients at ease and encouraged them to socialize with one another.

The educational program began during the second day of the seminar. Dr. Roman Hajek presented news about myeloma research and treatment developments, while Dr. Petr Hylena described the accomplishments and activities of KPMM over the past year. 

Dr. Miroslav Hrianka, president of the Slovak Myeloma Society, also attended the meeting and spoke about his group's activities and the treatment landscape for patients in Slovakia. The myeloma communities from the Czech Republic and Slovakia have a close relationship, supporting each other and working together.

Patients living with myeloma told stories about enjoying their lives and experiencing new things no matter the heaviness of the disease, which provided inspiration to all in attendance. We heard about and saw pictures of the exciting life of a myeloma patient who decided with his wife not to allow his myeloma to run his life. He and his family travel the world to hike, walk, swim, and enjoy other physical activities. It was very touching and definitely inspiring.

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The rest of the afternoon included a presentation on changes in social security in the Czech Republic, presented by Lea Janku; a panel discussion that included lively questions from the audience; and breakout sessions for more concentrated Q&A discussions. With beautiful weather, the afternoon Q&A sessions were conducted outdoors by the lake. Dr. Roman Hajek led a session on clinical trials, Dr. Vladimir Maisnar led a session on the management of side effects, and Dr. Petr Pavlicek led a session on alternative treatment approaches.

The meeting ended with an enthusiastic "thank you and see you next year" from all of the participants. This very successful meeting was a wonderful way to celebrate KPMM's 10th anniversary.

I also visited Boudry, Switzerland this month to meet with myeloma researchers at Celgene Europe's headquarters. Celgene is a developer of important myeloma therapies that have made an impact on many myeloma patients around the world. The company's therapies include Thalomid (thalidomide), Revlimid (lenalidomide), and Pomalyst/Imnovid (pomalidomide). Celgene scientists continue their commitment to myeloma with research on additional therapies.

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During the trip, I visited Celgene's Boudry research laboratories, which were impressive and very well organized. I was happy to see the space where the exciting work is being done.

I then shared with 15 researchers and Celgene Europe employees in the meeting room--and many more on video--the important work the IMF is doing with myeloma patients in Europe and around the world. In addition to learning about the IMF's patient education, support, and advocacy efforts, the audience was very interested to learn about IMF-led research projects, including the Black Swan Research Initiative.

I look forward to continuing to expand the IMF's relationships with researchers and patient organizations throughout Europe that share the common goal of supporting and improving life for myeloma patients. 


Nadia Elkebir
IMF Director of Europe and the Middle East


Czech Patient & Family Seminar photos courtesy of KPMM member Mr. Pavel Skarka.

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A Whole New World: Becoming a Patient Advocate

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What does it mean to be a patient advocate? If you asked me that six years ago I would have no idea how to answer that question. Six years ago I was newly diagnosed with myeloma and struggling to learn about this heterogeneous disease and all the treatment options that would be available to me. Six years ago I was quite a different person. Six years ago I didn't have discussions with my healthcare team or ask them questions when things didn't seem right. Six years ago I thought I would offend my doctor if I sought a second opinion. Six years ago I was an uneducated, uninvolved patient who blindly followed doctor's orders. BUT six years ago I had the good fortune to attend my first IMF Patient & Family Seminar in Short Hills, New Jersey and things began to change.

The IMF quickly taught me that "Knowledge is Power." Being a teacher I liked acquiring knowledge so I began educating myself about myeloma. I attended IMF Patient & Family Seminars, listened to webcasts and Living Well with Myeloma teleconferences, participated in online communities like ACOR.org, which is now smartpatients.com and read countless publications. Gradually I became a more active participant in my healthcare. I was asking questions, engaging in discussions, requesting tests and seeking second opinions. I was becoming my own advocate and an "e-patient."  I shared what I learned about the importance of being an educated, empowered and engaged patient with members of my support group, the newly diagnosed myeloma patients I mentored, family and friends. 

I thought I was a "patient advocate;" boy did I have a lot to learn! In 2011 I was to asked to represent the Philadelphia Multiple Myeloma Networking Group at the IMF's annual Support Group Leaders Summit. While registering at the summit, two young ladies from the IMF Advocacy team approached me about participating in an upcoming advocacy training webinar. They were so nice and passionate about what they were doing, I couldn't say no.

I was trained by the IMF on how to become a political advocate. The IMF Advocacy team helps guide individuals to advocate for critical health issues that affect the myeloma community. I learned how to arrange a meeting with my representatives to Congress, how to conduct an in-district meeting and what the appropriate follow-up should be after a meeting. I was also educated on the current critical issues facing myeloma patients. Soon I found myself sitting at an in-district meeting with the legislative health aide from my district in New Jersey, asking for support for the oral chemo parity bill, the Cancer Drug Coverage Parity Act. I'm happy to say days after that meeting, Rep. Rush Holt, my representative to Congress, signed on as a co-sponsor of this bill. I would like to think it had something to do with my meeting and how well the IMF Advocacy team prepared me for it.

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This year I attended the American Association for Cancer Research's (AACR) Annual Meeting. I was selected to be part of the AACR's Scientist-Survivor program. This is a very competitive program, but thanks to the training and opportunities the IMF has afforded me I received one of AACR's coveted scholarships. While at the meeting I discovered an entire new area of advocacy- research advocacy. Research advocates provide the unique patient perspective in the research process, working with investigators, companies and government agencies to accelerate progress against cancer. As part of the AACR's Scientist-Survivor Program I learned that the National Cancer Institute (NCI) and the Department of Defense (DOD) use research advocates. I also learned that research advocates must demonstrate an understanding of cancer and the research process, have a familiarity with how the scientific community works and be able to work as a member of a scientific team.

Many of the other participants in the Scientist-Survivor Program were already research advocates serving on IRBs (Institutional Review Boards), participating in advisory boards, speaking on panel discussions at scientific meetings and refining cancer research education materials. They were very willing to guide me on how to become involved in this new avenue of advocacy. Once again I felt prepared to undertake this new endeavor because of the IMF. I learned a lot about clinical trials and research by attending the American Society of Hematology's Annual Meeting as a patient advocate representing the IMF.

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Upon my return from the AACR's Annual Meeting I created a research advocate profile on the NCI's newly designed Office of Advocacy Relations (OAR) website. But I felt I was at a stand-still. I was in the NCI system, but I only would be contacted if they needed a research advocate that matched my profile.

Once again I was asked to represent my support group this year at the IMF Support Group Leaders Summit. Part of this year's training was a session on.... you guessed it- research advocacy. Research advocates Jack, Jim and Mike presented to the group and encouraged us to get involved. They suggested we start our advocacy efforts at the local level at our own cancer center. I took their advice and contacted my local cancer center and asked if I could observe one of their Institutional Review Board (IRB) meetings. IRBs are groups of experts who review plans for clinical trials before they begin, seeking to protect the safety and rights of people who will participate in the research. My local cancer center was very accommodating and invited me to sit in on an IRB meeting a few weeks ago. After the meeting I wrote a thank you note and asked how I could become involved as a patient advocate on an IRB. In response to my question they invited me to observe another IRB meeting and then start the training process to join an IRB! I am now on my way to becoming a research advocate.

Why am I sharing this? Because anyone can become an advocate! You can be a support advocate, a political advocate, a research advocate or a fundraising advocate. The IMF is there to support you and provide you with the tools to be successful. Join the IMF ACTION team, start/participate in an IMF support group, work with Suzanne Battaglia to organize a fundraiser or try your hand at research advocacy. I have evolved as a patient and an advocate over the last six years and I have to credit the IMF with being instrumental in my metamorphosis.

Cynthia Chmielewski
@MyelomaTeacher on Twitter 

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During the last week of October, I had the pleasure of being a guest speaker at the annual multiple myeloma seminar in Seoul, South Korea hosted by the Korean Blood Cancer Association (KBCA) and the Korean Multiple Myeloma Working Party (KMMWP), a division of the Korean Society of Hematology (KSH).  This was the second time that the International Myeloma Foundation (IMF) had the honor of participating in this meeting to address myeloma patients in Korea, and the opportunity to meet with the team of dedicated physicians and members of the KBCA staff.

More than 250 patients and family members listened to presentations by the KMMWP on transplant, clinical trials, frontline therapy, and relapse. Fortunately, they were also excited to learn about advocacy, which is where I came in. While it has no direct translation in the Korean language, I explained that the word advocacy applies to many activities that meet the dictionary definition of " the act or process of supporting a cause." This can mean educating others about the disease, raising myeloma awareness in the community, or telling your story as a patient to the media or policymakers to illustrate the need for continued innovation in blood cancer and access to treatment for patients in Korea.

The message seemed to resonate with the audience as many patients approached me after the meeting to thank me for my participation and compassion for patients in Korea. I also learned that there is a lot of online advocacy activity already happening through a myeloma patient group affiliated with KBCA, the Korean Federation of Multiple Myeloma Patients (KFMMP).  I had the opportunity to meet with them and learn more about their organization and discuss ways in which we may collaborate to improve the circumstances for patients in Korea. My hope is that there will be much more to report on that effort in the near future.

A brief history of the KBCA:  The Korean Blood Cancer Association is a nonprofit organization that was established in December 1995 in Seoul, South Korea with the mission of supporting patients through education, consulting, support programs, and financial assistance. The association offers various programs that are similar to ours at the IMF and they are run by a compassionate group of patients and social workers.  KBCA also started the Hope Medical Information Center, which is run by nurses and social workers, and offers support programs to patients and their families. It is the only center of its kind in Seoul where patients can come to learn, meet other patients, get emotional support, and participate in a programs including patient mentoring, medical information sessions, yoga therapy, mind healing, and nutritional/cooking classes, to name a few. I was very impressed with the number of classes and programs offered and how they aim to treat the whole patient, physically, mentally, emotionally, and spiritually. 

While we may come from very different parts of the world, it was quite clear that the passion and dedication that we have for the myeloma community is the same from one side of the world to the other, and we will all continue to work tirelessly to support patients and their families battling myeloma.
 
I'd like to sincerely thank the staff at KBCA, HOPE Center, and the members of the KMMWP for your hospitality, your compassion for patients and for the amazing opportunity to be a part of your outstanding work!

  • Mike Katz: "I just can't imagine life without him"
  • A Myeloma Patient Seminar, Italian Style
  • The Donkey in Albany: A Year with Multiple Myeloma.
  • Report From November 2014 Patient & Family Seminars in Norway and Denmark
  • The IMF Co-Hosts Patient & Family Seminar in Slovakia
  • A Patient Reports on Her Experience Serving on the IRB Board
  • The IMF Strengthens International Relationships in Europe
  • A Whole New World: Becoming a Patient Advocate
  • IMF Inspires Patient Advocates in South Korea

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