Recently in Support Group Leader Summit Category
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.
Saturday was capped by a wonderful dinner that gave us all the chance to get to know more about some of the leaders. Robin started it all off by inviting the newbies to stand up and introduce themselves.
Although I was writing as fast as I could, I could not catch everthing, but here is some of what was said:
Ray and Gail from Lubbock, Texas had the distinction of being the newest group leaders. That's because they don't even have a group yet! They came to learn about starting and maintaining a support group and said they learned a lot and met wonderful people. We look forward to a Lubbock group soon!
Malcolm from Encino, California, worked for years for IBM and thought he was technically savvy until he received the Support Group Leader iPad. He is off to a good start with over 20 people in his newly established group.
Tom from Orange County, California, was diagnosed five years ago. He said he went to his first meeting a week after being diagnosed. He took over the group 4 months ago. Tom told us he takes seven exercise classes a week! (Honestly, I needed a nap after hearing that!) He said it was so important to be surrounded by such vibrant people who were long-term survivors.
Teresa from Spokane, Washington--grandmother of five (!)--had just had her first meeting the Monday before the Summit, and had 29 people show up! She had no idea what to expect from the Summit, and found the information shared phenomenal.
Ed from East Texas said he hopes he can absorb the overwhelming amount of information he is learning at the Summit. At home, when he takes dex, he goes night fishing where he can holler and shout without bothering anyone. Except the fish, I guess.
Joanna from San Diego, California took up the recorder after going through treatment. She snorkels, and thinks it is more dangerous to drive the California freeways than to encounter a shark under water.
Lorelei from Canada's baggage never arrived. So she was off to a bumpy start, but maintained the most sunny attitude throughout the weekend. She was diagnosed three years ago, but it took three years to get the diagnosis. She says she has two lovely children who are the good results of her bad taste in men.
Barb from Stillwater, Minnesota had us laughing when said she was pissed when she was diagnosed. Why her? After all, she was a good person--drove a hybrid, recycled! The Summit far exceeded her expectations and she loved meeting new people.
David from Charlotte, North Carolina told the story of his daughter's six-month medical emergency, and how 4 months after they were out of the woods with their daughter, a diagnosis of myeloma came into their house. He and his wife drew upon reserves of strength and decided they did it once, they could do it again and got matching tattoos that say, "Have Faith." We were all very touched by that.
Then Joe from Atlanta, Georgia got up and, after thanking Andy from the IMF for his help, brought the group to tears (he literally made me a sobbing mess) by singing Amazing Grace in a beautiful baritone.
John from Kansas City, Missouri, also known to his students as "Old Man Myeloma," told us about a fundraiser he is having before his 2nd stem cell transplant. The fundraiser is called "The Mullet Must Go!" No, it is not about evicting a fish. It is about cutting his mullet--the 80's haircut that is long in the back and short in the front--to raise money to send kids with cancer to camp.
Andi from Texarkana, Arkansas stood up and said that she was unaccustomed to speaking in public, but I didn't believe her and I'll tell you why. We met when I was working the registration table, and she approached and said, "I don't know anything about how to run a support group," in a voice that was all butter and syrup. But after talking to her later, I realized that she was the epitome of a Steel Magnolia. She made it sound as though she was soft and clueless, but she had built her new support group from the ground up.
Gail from Boca Raton, Florida said she felt as though becoming part of this group of leaders was like joining a wonderful family.
Tamy from Richmond, Kentucky stood up and thanked the IMF and the other leaders for being her family. She and Modenia run the Fearless in Flight group and serve as support for each other as well as their members.
Modenia then stood up and said she was just a little country girl who had a dream 3 1/2 years ago when she founded the Fearless in Flight group. Sometimes she wants to lose her mind, but when she sees the smiles on the faces of her members, she is transformed. When you are discouraged, she said, just hold on. It is worth everything you are putting into it.
I think it is safe to say that these are some of the best people you will ever meet. I feel honored to be in their presence.
Night y'all. (When in Texas...)
Following Greg Pacini was the Working Lunch with Dr. Durie. This is a very popular segment of the summit because it gives the support group leaders the opportunity to ask random questions of Dr. Durie, who conveniently does not eat in the middle of the day. He answered the questions in depth, but I couldn't write as fast as he answered them, so what you are going to get here is the gist of what was said.
As we opened our box lunches, he opened the session with the question: Are there recurrent issues in your groups?
The first issue that came up was the problem of infection. How should they handle it if someone gets sick and spikes a fever?
Dr. Durie said the best way is to make like a Boy Scout and Be Prepared. You have to pay attention to fever. You need to have it checked out right away. So what do you do if it is Friday night after 5:30 and you need someone to call? Plan ahead. Don't wait. Have a number ready. Take antibiotics with you when you travel in case you spike
a fever when travelling. Carry a list of medications with you with your doctor's
number or email on it.
What about taking the vaccine for shingles?
Ask if the vaccine is live because myeloma patients should NOT take live vaccines.
If a family member gets the vaccine and then comes down with a pseudo version of
chicken pox, which sometimes happens, how long do you have to avoid them?
Two weeks at least
How about if your protein starts going up but you have no other CRAB symptoms. Do you need to
start a new treatment?
It's not an absolute reason to restart
therapy, but you don't want to drift too long before being checked. The answer is that you need to double check to make sure if there are any new bone lesions.
How do you deal with doctors who do not understand what
spiking a fever means in myeloma?
Carry a summary letter from your own doctor telling
them what it means.
What about the level of beta-2 micro?
When first diagnosed the number is
important for staging. Should you ever have it re-checked? Yes, at relapse or
if there is a question about the status of the disease. However, it does go up because of
infection, so it is not an absolute indicator of myeloma activity.
What are MGUS and smoldering myeloma?
Smoldering myeloma and MGUS are ongoing immune defects that
A transplant eligible patient wanted to know if and when he should have a transplant.
Durie said that it is an open question. It is not mandatory to have a
transplant. He might wait for the VRD studies, where they are seeing that
somewhere around half of the patients can have a complete remission. There are
small numbers of cells that are left. If in complete remission, the average
length of remission is 2 years, so you could have your stem cells harvested,
but there would be no rush for 2 years. If we get to the point where there is
definitive information about transplant, then he would be more definite.
Extreme cramping. What to do?
Cramping can be drug related. It is more
common with imids than with proteasome inhibitors. If you get them when you are off medication, then check
electrolytes, potassium, magnesium. You should actually check all meds. Statins may cause muscle
Why in myeloma do some of the Ig's go up while others go down?
If you have IgG myeloma, the IgG takes over and the IgA and IgM go down. If you have IgA myeloma, the IgA takes over and the IgG and IgM go down. The increases and decreases tend to be in proportion. However, even if the IgG (for example) drops to normal, the IgA and IgM stay somewhat low.
is the biggest problem we don't know how to deal with. Some neuropathy is
caused by the treatment, and we have topical treatments for it, including a
neuropathy cream containing capsaicin. Teresa Miceli, a nurse from the Mayo Clinic who facilitates the group there, suggested that the
antidepressant Cymbalta (duloxetine) had been found to relieve the symptoms of
chemotherapy-induced peripheral neuropathy.
What about the problem of no myeloma specialists in many areas of the
Raise the educational level in the community. Take the IMWG Guidelines to your doctors.
This session was led by Greg Pacini, MS LPC CGP, a licensed certified counselor specializing in the treatment
of living with chronic illness and author of Journey Beyond Diagnosis
Addressing the fact that almost all of our support group leaders are patients or caregivers themselves, he first talked about the whole experience surrounding a diagnosis of myeloma. The experience of feeling out of control and powerless. Like being on a rollercoaster. Then he asked them: "How has it been for you feeling like a rollercoaster managing the ups and downs of your group?"
The responses from the room were very interesting. Lorelei from Canada remarked that it is scary and exciting. The ride is different for everyone. Someone else said that they have varying levels of wellness in their group. They need to manage the highs and lows. Teresa Miceli, a nurse who facilitates the Mayo Clinic group commented that as a facilitator, she feels her personal energy level can affect the group. She feels she needs to make sure her energy level is up. She wants to be present for the group. Greg responded that it is not necessarily important to be up. Allowing the group to know that you are a human being with good days and not so good days is a good thing too. You let them in.
He talked about the challenges of losing group members. He acknowledged that they experience loss not only because they are the facilitators, but because they are also friends of the members. "We are powerless over the illness. There is nothing we can do but be present." He talked about his own experience facilitating a group in which he carried the pain of the members into his own life. "I was taking a little bit of everyone's pain with me. But I realized I cannot do it either for me or for them. I let it go because it does not belong to me. If I take someone's pain, my message to them is that
you cannot handle it yourself. You are not powerful. But we are all powerful."
He addressed the discussion of death and dying within the groups and said an interesting thing. He said that he believed if, as the facilitator, you are uncomfortable discussing death then you will attract people who feel the same way. The group will follow you and go where you go. The people who want to discuss it will feel like outsiders and will not come to the group. But if you are open to talking about things, people will talk.
This caused some anger in the room. One support group leader said, "I am told all the time that the reason I come to your meeting is because it is positive. If I came here and you were talking about death and dying I would not come."
Greg said that you just have to be ready to create the invitation to talk about it. He said that you can admit that you may be uncomfortable about a topic. Admit it and let them in. By doing so you make space for every emotion--fear, anger, and hope.
He told them that when they step into their role as facilitators, they need to create healthy boundaries for the group (i.e., time monitoring, limiting crosstalk, no one interrupts) within which experiences can be shared. The boundaries create a containment that in turn creates a feeling of safety. Within the boundaries, you trust that the group will go in some direction that is
As facilitators, he told them, you have other responsibilities besides creating healthy boundaries. He told them, "You are the goal setters, the focus managers. Your curiosity invites sharing. 'What was that like for you? How do you feel tonight?' By restating what was said, you invite reflection. Question the question to find out what may be bothering them that they asked it." He reminded them to acknowledge difficult emotions. To accept them, and to hold on to hope.
He closed the session with a beautiful song he wrote called "It Will Be."
I have finally gotten back to posting my blogs from the Support Group Leader Summit. Honestly, so much exciting stuff is going on at the IMF, it is hard to keep up. Right now I am at the LA Patient & Family Seminar!
Anyway, back to the Summit. Saturday was BIG. In the morning, Susie started
the day with a HUGE surprise. In a very dramatic ceremony--lowered lights,
musical fanfare, people rushing into the room with tables loaded with white
boxes--she announced that the IMF, thanks to funding by Celgene, Millennium,
Onyx, and Sanofi, was giving each of the support groups an iPad fully loaded
with all the materials support group leaders need to more effectively do their
The room exploded with excitement!
Paula van Riper declared she felt as though she was on Oprah. Modenia Black's
computer had just died. She didn't know how she was going to replace it, and
she was presented with an iPad to help with communication with her group. The
reaction around the room was WOW, WOW, WOW!
One necessary part of business took place next, and that was having the leaders
sign an agreement that, in summary, indicated that the iPads belong to the
group, and if the leader steps down it is passed on to the new leader and if
the group closes up shop they must return the iPad to the IMF.
The Support Group Team knew you couldn't give someone such an exciting gadget
and expect them to sit there and ignore it, so Robin had scheduled an iPad
lesson run by Kelly Cox, Thomas Shin, the IMF's tech support guru, and a guy
from Apple (who we really didn't need because Kelly and Thomas did a way better job of
explaining how to use it).
Also helping the leaders learn how to use
their iPads were the Support Group leaders who--while keeping the big surprise a
secret--had beta-tested the iPads.** They stood up to be acknowledged, then got
down to helping others learn how to navigate the special features Thomas had
loaded onto each iPad. As I looked around the room I also saw some of the
pharma sponsors helping the leaders learn the basics! They spent the next
couple of hours learning how to use their new tools.
I don't have anything to
write about other than feeling the general sense of wonder and delight in the
room, so I will show you how it looked:
**Many, many thanks to the following Beta-Testers for their generous spirits:
- Jack Aiello - San Francisco, CA
- Hunter & Dianna Chiles - Jacksonville, FL
- Gail Young - Boca Raton, FL
- Jim Barth - Tampa/St. Pete, FL
- Yelak Biru - Dallas, TX
- Joanna Jones - San Diego, CA
- Cindy Ralston, Kansas City, MO
- Nancy Bruno - Atlanta, GA
- Barbara Marx - Richmond, VA
- Linda & Jack Huguelet - Chattanooga, TN
- Cindy Chmielewski, Philly, PA
- Jerry Walton - Norfolk, VA
In my excitement about publishing my first blog
from Friday, the one in which Susie welcomed the support group leaders, I
forgot to tell you that she thanked our sponsors for their support of the
They fund this meeting in full, and without their support the Summit would not
Our thanks to them for making this fabulous weekend possible.
- Millennium; The Takeda Oncology Company
- Diplomat Pharmacy
- Bristol-Myers Squibb
- Marx Family Foundation
After a long and educational first day--a day of updates and understanding, of mixing and mentoring, we were ready to party! But first the support group leaders had their picture taken. This could have been a nightmare, trying to wrangle this group, but it was easy because these guys know something about compliance! Everyone lined up by height and smiled when Jim Needham, who stood on a ten foot ladder with a very heavy camera, told them to say cheese.
Afterwards, wine and appetizers were served in the foyer of the ballroom, giving us a chance to sit and talk with each other, which is always fun. So much fun that it wasn't hard to follow Alan Kumamoto's final instruction of the day: "I want you to make three new friends tonight." We then went inside for a delicious dinner where we toasted the FDA approval of Onyx's Kyprolis and our good fortune to have another drug in the myeloma treatment armamentarium.
After we had consumed enough food to make us happily quiet, the Advocacy Team presented their Second Annual Academy Awards of Advocacy to leaders who had taken the time to testify or work on behalf of the Oral Parity efforts. Each winner received an Oscar statue to drum rolls and Olympic music at the end of a red carpet. With
the lights down and the spotlight shining, the winners were honored for their
hard work and dedication to our advocacy program--and for going above and beyond
to have their voices heard on behalf of all cancer patients.
And the winners
were... Jerry Walton (Norfolk, VA), Johanna Jones (San Diego, CA), Nick Menedis
(Columbus, OH), Darlene Jessee (Johnson City, TN), John Killip (Kansas City,
MO), Sue VanDuyn (Grand Rapids, MI), Paula Van Riper (Central New Jersey), and
Cindy Chmielewski (Philadelphia, PA). Absent winners - Jim Omel (Grand Island,
NE), and Anthony Sibert (Riverside, CA). Congratulations to all of our All-Star
Cindy Chmielewski on the red carpet
Darlene Jessee receiving her award.
Meghan and Aimee with Nick Menedis.
From left to right, we have Darlene Jessee, Cindy Chmielewski, Sue VanDyun, John Killip, Joanna Jones, Nick Menedis, Paula van Riper and Jerry Walton. Not pictured are winners Jim Omel, Anthony Sibert, and Rob and Sue Enright.
And then it was off to our rooms to watch the opening of the Olympics in London before we passed out.
The next day there would be a big surprise for the leaders. And I mean BIG! Stay tuned.
The third presentation on Friday was by Debbie Birns, a 10-year veteran of the IMF Hotline, on Monitoring Multiple Myeloma: Making Sense of Tests and Results. This was a highly anticipated presentation and she did not disappoint. She pointed out that she is not a doctor, she is a translater of the information. Her job is to help you understand what the test results mean. She made several very important points.
After explaining what tests can tell us, she told us what we need to be careful about when we look at results:
- Don't compare results with other patients.
- No human body is in a steady state. She said test results may vary about 15% either way without necessarily being cause for concern.
- Patterns of results over time are more important than any single test result.
- No single test tells the whole story.
- For some patients, certain tests are more important than others.
- Normal lab values (usually expressed as a range from ULN and LLN) vary from lab to lab.
- Test results can also vary from facility to facility.
- Make sure you are always looking at values expressed in the same units (i.e. grams, milligrams, liters, deciliters, etc.).
- Get and keep copies of your test results.
She then went on to explain the different types of tests--lab, imaging, pathology, and genetic.
She also reminded us that there is a publication on the IMF website called The Myeloma Patient's Guide to Understanding Your Test Results.
View the slides from this session.
If you have any questions about interpreting your test results, call her or the other Hotline Coordinators on the Hotline at 800-452-2873.
I think next time we should film this session.
The second presentation on Friday was an update by members of the Advocacy Team, Meghan Buzby, Director of US Advocacy, and Aimee Martin, Grassroots Liaison.
First they reminded us why advocacy is so important. Advocacy raises public awareness of myeloma, ensures that all of us have a voice and that it will be heard. Advocacy changes community attitudes and helps us gain access to resources and funding.
Then they talked about the accomplishments of the Team. And, frankly, the Advocacy Team has been on fire this year on our behalf.
HOT TOPICS FOR 2012
The hot advocacy topics for 2012 are that the Supreme Court upheld the Affordable Care Act and that, thanks in no small part to the tireless activities of the Advocacy Team, 20 states have passed a version of Oral Chemotherapy Access legislation.
AFFORDABLE CARE ACT
Meghan explained the Affordable Care Act to us in lay language. It is pretty complicated, but from what I understood, every state will provide 10 essential health benefits. Advocacy is working to contact states that have identified their essential health benefits to make sure that access to those benefits is implemented. View the slides for this session here.
Meghan then gave us some key links for more information on the Affordable Care Act:
ORAL CHEMO ACCESS UPDATE
The Advocacy Team has been working on this issue for 3 years. Oral Chemo Access ensures that out of pocket cost is the same for oral and IV chemotherapy. The legislation has been passed by 20 states so far. Six passed it this year alone.
At the Federal level HR 2746 is the Cancer Coverage Parity Act. So far there are 45 sponsors of the bill (in 2009 there were only 5 sponsors).
PATIENTS EQUAL ACCESS COALITION (PEAC)
PEAC, headed by the IMF Advocacy Team, is working with other cancer organizations at the state level on this issue. Meghan and Aimee pointed out that working at the state level is laying the groundwork for federal legislation. Members of PEAC also worked to reintroduce the federal bill last year.
POSTCARDS FOR PARITY
Aimee told us about Postcards for Parity, which will be used to send to an individual's federal legislators in support of HR 2746. It is a very easy way for your friends and family to communicate with their legislators on behalf of an important issue to all cancer patients.
Then it was time for Debbie Birns of the Hotline to explain our test results.
It's 2:45 in the morning, and we have finished the first day of the 2012 Support Group Leader Summit. Although this is the 13th Summit to be held, this is only the second Summit I have attended in my 10 years with the IMF. (I am the web producer, and as a rule we don't get out that often.) I was only too happy, though, to be asked to blog again. Last year's Summit was an inspiring and emotionally moving experience. (You can see what I wrote about the first day last year here.)
It is wonderful to see everyone again and to meet the new leaders. You have to understand that to me these are truly amazing people. Almost all of them--we have some social workers and nurses in the group who are also amazing--are patients or caregivers themselves. They could have turned inward on receiving a diagnosis of myeloma, but instead they turned outward and have committed themselves to helping others. And there are so many new leaders here this time! Leaders who have created groups where there were none. We even have one couple who has come to learn how to start a support group. (I will give everyone a name as I go along. Right now, in the middle of the night, I just want you to know what it felt like to be in the room yesterday.)
We started the Summit with a welcome from Susie Novis, who thanked the sponsors, identified a couple of leaders who had been at the first Summit (wow!) and went on to explain that Robin Tuohy and the Support Group Team had given everyone a seat assignment because there were so many new leaders they wanted the newbies to be seated with more veteran leaders.
She then introduced Dr. Durie, who gave us his annual medical update. I am sure he will blog about the specifics of his talk. Or at least I HOPE he will, because--like last year--some of it was very esoteric and I cannot do it justice. The gist of it was that for a myeloma doctor, these are very exciting times. In the last 5 years it has been particularly exciting because of the new drugs and things happening that are going to improve the outcomes for patients for myeloma.
First of all he talked about the new drug that has recently been FDA approved (Kyprolis) and those that are on the horizon such as pomalidomide, elotuzumab, and panobinostat. And then he began to explain how the International Myeloma Working Group (IMWG), made up of 160 of the world's myeloma experts, is turning its attention to several new strategic concepts involving early disease, frontline therapies, supportive care, maintenance, myeloma treatment around the world, and how to identify and manage plasma cell leukemia (PCL) and extramedullary plasmacytomata (EMP) in 2012.
Again, I will let Dr. Durie explain in detail what the plans are, but I got from the talk that although they are very excited about the new drugs, research into what are the most effective combinations of currently available drugs is also leading to some interesting results. What are the best and most cost efficient treatments and the ones that give the best quality of life.
He said there has been a shift in medical focus that is happening right now. In the last few years there has been a lot of interest in chromosome testing in myeloma. And now there is multiparameter immune testing that can be used to more clearly identify patients in different groups so that they can come up with more personalized therapies.
He also said that if we are looking for a cure, although it is important to identify the poor risk patients, the cure is going to come by looking at the good risk patients and determining what will work to bring them long progression-free survival.
He talked about so much that is so new, my head began to swim. He gives the leaders this update because he wants them to know about what is in the pipeline and share the information with their members. I came away feeling confident that Dr. Durie and his
colleagues were on the case.
Next up were Meghan and Aimee and the incredible accomplishments of the Advocacy Team. But I am going back to bed for now. More later.