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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 SundfÃ¦r, RN
"Awareness and Coping," which was presented by Tone Hansen, Director, Henie Onstad Kunstsenter, HÃ¸vikodden. 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.
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.
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.
IMF Director of Europe and the Middle East
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.
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.
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:
Alice Onderkova from CMG (Czech Myeloma Group) - Czech Republic
Kinga Kocemba from Carita - Poland
Margareta Bartosova & Mr. Hrianka Miroslav from SMS (Slovak Myeloma Society
& Patient Club)
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.
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.
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.
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.
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.
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!
IMF Director of Europe and the Middle East
IMF continued to strengthen its international relationships with patients,
advocacy groups, and biopharmaceutical companies focusing on myeloma research
with meetings in Europe this month.
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
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.
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
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.
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.
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
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.
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.
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
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
IMF Director of Europe and the Middle East
Czech Patient &
Family Seminar photos courtesy of KPMM member Mr. Pavel Skarka.
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!
My name is Kathy Cartwright and I have been living with a
myeloma diagnosis for approximately 11 years.
Call me what you want--daughter, sister, wife, mother, friend,
myeloma patient, myeloma survivor and now, myeloma advocate!
Back in July, while attending the IMF Support Group Leader
Summit, I learned that advocacy is not the same old politics-- advocacy can affect
each one of us and the care we get as patients.
I am so glad Aimee Martin and the rest of the IMF advocacy
team explained some of the simple ways we can influence our local, state and
federal governments to pass laws to protect cancer patients and to promote
cancer/myeloma research. Postcards for Parity are postcards the IMF produces to
collect signatures in support of the Cancer Drug Coverage Parity Act (HR2746).
This bill would help get chemotherapies covered equally whether they're
delivered orally, intravenously or by injection.
People can get more information on the IMF website, read all
about it, and what you can do to help get this bill passed in your state!
I got a bunch of the postcards when we were at the summit, and
brought them back to our support group. We had a good response because everyone
knows this bill would affect them. Everyone signed them! Most members took
extra for family and friends to sign, too. One member's daughter had Aimee send
her a batch to take to her church. Her pastor will be making an announcement
and they will be getting the cards signed! I also took the cards to the
hospital with me and all the nurses wanted to sign them!
Most people have no idea there is a difference in coverage.
They are appalled to learn this information, and therefore happy to support the
cause!! I am glad I learned about the Postcards for Parity so I can help in
this simple way that will have a huge impact on myeloma patients as well as all
We, as citizens and cancer survivors, owe it to ourselves as well as for those
who have lost their battle to this awful disease to get involved. Please go to advocacy.myeloma.org or
call the IMF to learn more.
To everyone who subscribes to the RSS feed for the blogs--I owe you an apology. I went back and assigned each old blog to a category (i.e., Dr. Durie's blogs or IMF Community Blogs) to make them easier to search. Consequently, all of you got many emails chronicling my updates. I am so sorry. Don't panic, you won't get any more notices of old blogs. Just new, fresh ones will be coming your way.
Again, my apologies.
By Kelly Cox
At the IMF, I run the Regional Community Workshop program and
serve as a Regional Director of Support Groups. I frequently find myself travelling
to patient and medical meetings across the country. My aim is to bring the
IMF's mission directly to those affected by myeloma, as well as to the
healthcare professionals who serve them.
In June 2011, I was attending the annual meeting of the
American Society of Clinical Oncology (ASCO) in Chicago, Illinois. While taking
a short break from the IMF booth, I found myself walking the aisles of the
convention hall. One of the booths I passed had no visitors, so I stopped to
say a neighborly hello.
The DKMS Americas (dkmsamericas.org)
representatives were at ASCO to promote their cause and to solicit potential
bone marrow donors. The process was simple. A painless swab of the inside of my
cheek and I was on my way to becoming part of DKMS's database. I didn't give it
a second thought. I practically forgot this ever happened.
In August 2011, I received a call from the New York offices
of DKMS. It seemed that I was a possible match for a woman in her early 20s who
needed a transplant for acute aplastic anemia. The sample collected from me at
ASCO matched all the preliminary selection criteria. Even at that point in
time, the whole concept of being a donor remained pretty abstract for me.
Things started becoming a bit more "real" over the following
4-5 days when I started donating vials of blood for the next stage of the
matching process. In total, 21 vials of my blood were collected at a local Los
Angeles clinic. The next step could not take place in LA, so it was time for me
to fly to the Alta Bates Medical Center in Berkeley, CA.
They were so nice to me. They took great care of me and my
wife, Mary. My niece and Mary's best friend were with us for support. The day
before the collection procedure, we walked around the Berkeley campus, had a
sandwich and some gelato. It was a beautiful, sunny day. I felt so happy and so
excited in anticipation of the next morning. I stayed up most of that night
because I was too energized and giddy to go to sleep. The mere thought of what
was to come gave me goose bumps.
At 7 a.m., as I was waking up from the anesthesia, my bone
marrow was already aboard a plane heading for an unnamed destination on the
East Coast where the recipient was waiting. 176 punctures in my back and pelvic
bones yielded 1.5 liters of bone marrow, more than enough for the recipient's
transplant. As I lay in the hospital bed recovering from the bone marrow "taps,"
watching the two pints of blood I had "banked" being re-infused into me, the
magnitude of the experience began to sink in.
Now let me back up for a moment. I must confess that I read
none of the materials given to me in preparation for the collection procedure.
I just didn't want to know what I was getting myself into. In hindsight, maybe
this was because I did not want to learn something that might have discouraged
me from moving forward. I felt fully committed and I wanted nothing to stand in
The only question I remember asking in advance was addressed
to Dr. Morie A. Gertz of the Mayo Clinic in Rochester, MN. Dr. Gertz is a member of the IMF's Scientific
Advisory Board, a frequent faculty presenter at the IMF's patient education
meetings, and an all-round great guy. He told me that a patient with acute
aplastic anemia had a 95% chance of survival after a well-matched donor
transplant. That was all I needed to hear.
Being a donor is a personal choice. While I certainly
appreciated all the support I received from friends and family members throughout
the process, I did not expect the outpouring of positive messages I received
via my Facebook page, many of them from strangers or from people I had lost
touch with over the years.
Oddly, the emotional impact of the entire experience hits
home now, after the fact, more than it did before or during the donation
process. I get choked up when I think of it and, especially, when I think of
that young woman. I hope that the transplant was successful and that it has
given her a fresh start. I catch myself wishing that she has a full and
productive life and, whenever she is up for it, I hope that she will find a way
to be of service to someone else who is in need of help.
The donation was anonymous. While I would love to meet my
recipient, there is no telling if this will ever happen. In the meantime, I
would want her to know a few things about me. I am 53 years old and I have
spent most of my life trying to be of service, trying to make this world a
better place. I work for a wonderful non-profit organization, alongside
colleagues who spend each and every day making the lives of others better and
healthier. I have a newfound empathy and admiration for the myeloma patients I
work with who undergo transplantation as part of their cancer therapy.
I've been told I have a big heart and I really do I care
about helping people. I feel honored and grateful to have had an opportunity to
be a donor. If she ever needs it, I will be here for the same recipient again
in the future. And I have gone on to donate blood and platelets through two
additional organizations in hopes of helping more people.
Emotionally, spiritually, and intellectually I am absolutely
blown away by the experience. And I am still struggling to wrap my mind around
the concept of possibly saving a life. Without a doubt, this was one of the
most important events and accomplishments of my life.
Have you ever had the desire or the need to sit with a
world-renowned myeloma specialist to learn about and ask questions about your own
or your loved one's disease? How about
four world-renowned myeloma specialists?
We thought so!
With that in mind, the
International Myeloma Foundation created one of our flagship programs back in 1992, and we have been holding
them ever since: Patient & Family Seminars.
Seminars are offered throughout the year in the US and in other countries. The seminars are usually held over a Friday and Saturday and cover a wide range of issues, including:
How to be a Better Patient, Management of Side Effects, Understanding
Scientific Literature, Myeloma 101, Best Therapies for Elderly Patients, Stem
Cell Transplantation, Management of Bone Disease, Clinical trials and New
The knowledge gained will empower you. The experiences shared with other patients
and caregivers will enrich and strengthen you.
Our 2011 Patient & Family Seminars in the US:
Boca Raton, FL - February 25-26 SOLD OUT
San Francisco, CA - March 11-12
Dallas, TX - July 15-16
Philadelphia, PA - August 26-27http://
Click here to register online or register by phone, please call (800) 452-2873. Don't delay.
Hotel discounts are only valid up to 30 days prior to each seminar.
If you are unable to attend one of these events
this year, we have made available a free DVD of our Los Angeles 2010
seminar. To obtain one, just give us a
call at (800) 452-2873. There are also a number of videos from past seminars that can be viewed online.