We finished yesterday by having our picture taken as a group followed by a wonderful dinner. Very good food, although why I am pointing this out now I don't know. The food has been excellent throughout this whole event. Excellent and plentiful. I have to hold up the tomato bisque as a particular favorite. The dinner was really fun and we laughed a lot. Kelly was the object of a lot of friendly ribbing, and, I have to say, love.
Today, in the final sessions we worked on improving communication among the support group leaders. Conference calls are planned and other techniques are in the works to make sure the group--those who were here and those who weren't able to come--is able to stay close.
The summit closed with an open mike session where leaders were given the opportunity to talk about what the summit meant to them, and if there was a dry eye in the place, I didn't see it. Without any attribution because I cannot remember who said what, here are but a very few of the comments as I remember them. My apologies if I didn't get them exactly right. So much was said in a little time.
think the one thing that truly amazed me is that cancer patients can have fun.
I hope we can extend what we felt here to our new group."
room was alive with people who were alive. Who were the patients? Who were the
caregivers? Who were the experts? We learned from people who are living with
this, and who are alive."
"I didn't know what to expect.
First of all, for all the support group leaders. That you are here and are
persevering despite what you are going through. And I can tell that you love
your support group. And the IMF staff. You love your work. You aren't just in it for the job."
"I didn't know if I wanted to come to this meeting. I was weary. But today I am going back re-energized."
diagnosis is very isolating. It changes your life and your relationship with
your family and friends. Coming to this meeting...it is wonderful to share and
be encouraged. I am going home with passion."
"It is wonderful to know I have so many new friends."
"I lost my husband in January. And I retired from my job. I didn't know
what to do with my life anymore. But now I know. I have a new job. Now I
"This year I learned to share the satisfaction I get leading my support group."
"No one knows this, but I was going to announce that this would be my last time. But now I can honestly say that I am renewed. I will see you all next year."
"Everyone is always talking about the cure. But I have to say that every time we get around the group
from the IMF, it feels like a little bit of a cure."
"I know a lot of us belong to many groups. And our experience with them is life changing. But what we experience with the IMF is life saving."
don't know how much this has meant to me. I just loved being around all of you.
I means so much to me to know that you love me as much as I love my support group."
is my field of dreams. You know, if you build it and make them aware, they will come. It is three years since my transplant. My
3-year birthday gift will be to share the love that you share. This race is not
done until we touch everyone."
This session covered how to handle the stickier issues of running a group. David Girard moderated a panel made up of Jack Aiello, Jerry Walton, Susie Novis, and Robin Tuohy. The whole idea was to spur an open discussion of the tough questions: talking about medical info with your group, talking about loss, support group dynamics, and how to find speakers.
How to handle medical information? Jerry Walton first addressed this challenge, but soon questions from the group opened it up. It was understood that support group meetings were places that people
were going to share medical information. You almost cannot talk about myeloma without talking about treatment and side effects. So how do you communicate medical info to and within your group, understanding that you are not doctors?
What Jerry called the "Newbie Experience" was a big part of the discussion, because newly diagnosed patients need to know how to get information. Many suggestions were shared, including how to find information on the web, the publications from the IMF, and second opinions.
Finding Speakers Jack Aiello opened this discussion. He suggested that you begin by asking the group how often they want speakers. Most groups want them about half the time or less, because they want time for themselves, to talk and share. When looking for speakers, look for local myeloma experts. community hem-oncs. An interesting session would be to explore how they work with the experts--the Duries and the Kyles.
Look for nutritionists and physical therapists who have experience with myeloma. Ask the folks in the group, ask other support group leaders, ask your oncologist.
Jerry pointed out that he goes to conferences trolling for speakers. He figures that they have shown by being there that they are willing to speak. And if he finds their sessions of interest, he approaches them. He also said that Drs. Durie and Anderson didn't know it, but they were speakers at his meetings. He used the DVD from the Boca Raton Patient and Family seminar when he didn't have a live speaker.
Dealing with Grief Susie Novis addressed this topic. If there
is loss in the group, talk about it, she said. Don't avoid the subject.
Celebrate the person's life. Tell stories. "Hey," she said, "I would
want people to talk about me after I'm dead." Ask the group what they
want to do? If people don't want to participate, they don't have to.
Schedule the celebration. Maybe make it at the end of the meeting, so if
people feel uncomfortable, they can leave. Invite surviving caregivers
to come to the meetings. Make a scrap book with pictures. Just don't ignore the loss.
Group Dynamics Robin Tuohy closed the session with her topic: Group Dynamics. She started by saying she wanted to put a positive spin on the emotional roller coaster that is the myeloma experience: diagnosis, treatment, remission, relapse. How do you stay positive yourself and help your group members stay positive? She said, that at this summit she could feel the love, and suggested that we take advantage of relationships created at the summit. She asked Susie to talk about the "ten minute rule." There will be times that we need to cry. Okay, cry. Have a really good cry, but set a limit on it. Give yourself permission to cry for ten minutes. And then blow your nose and get back out there.
Robin encouraged us to be proactive. Acknowledge the myeloma experience. Know that at some point, relapse is there. What will you do? Plan. Be a better patient. Use education and research to help keep you on top of the subject. So you know what to do when the day comes. And when it happens, although you are never ready, you will be ready. You will circle the wagons and think about what matters in life most, focus on what's important.
Robin reminded us that it will not always be the myeloma. We are all getting older.
She talked about how to keep members coming back to the group. They come to meetings when they are in treatment, but when they are in remission, they often stop because they think they don't need it right now. Well, when patients are doing well, it is the time for them to give back. They were newbies once, and they learned from those with more experience. Now it is time for them to share with someone who is a newbie. It is their opportunity to help someone else.
Finally she said, "Don't be afraid to ask for help. And don't be afraid to accept help." Have fun. Be prepared.
Someone closed with the frog analogy. When your lily pad starts sinking, you jump to another one.
Bonnie Jenkins, RN, an integral part of Dr. Barlogie's team and member of the IMF Nurse Leadership Board, got a standing ovation for her talk. She covered three areas of interest:
Sub Cutaneous Velcade
At 12 weeks, drug effectiveness is the same as IV
But overall a 63% reduction in severe neuropathy
Patients feel increased convenience, so maybe in the distant future there might be a place for home administration of the drug in maintenance. Think insulin....it's not out of the realm of possibility.
Peripheral Neuropathy (PN)
Myeloma itself can cause PN, as can diabetes, shingles, vitamin deficiency
Chemo-induced PN is as individual as each patient.
Insufficient evidence was found to recommend non-pharmacologic or pharmacologic agents to treat PN
Evidence is mounting for the merits of physical activity in preventing and managing side effects
There are diagnostic tests for determining if the neuropathy is chemo-induced
To deal with PN, you need to try more than one approach and talk about it in your support group. Share ideas. See what works and what doesn't.
"Nutritional management is used to increase oxide synthesis and may offer the potential advantage of improving blood flow to the peripheral nerves and reduce symptoms." Metanx has had some positive results. It is a medical food complex that helps to convert arginine into nitric oxide.
I Will Survive! What do I do now that I forgot to die?
This talk is part of the Nurse Leadership Board's work on the long term care of myeloma patients. They will be publishing consensus statements shortly on managing the issues she talked about. But first she made us all stand up and dance to Gloria Gaynor's "I Will Survive!"
What is the life-long impact of out-living myeloma? First remember that you are a person who needs to be taken care of outside the myeloma. You may have issues caused by age and other conditions that are unrelated to the myeloma.
Download NLB novel therapy side-effects management papers on the IMF website. These are the output of the Nurse Leadership Board's first project, and they are essential for guiding the management of the side effects of the novel thereapies.
Don't stop medical follow-up because you are in remission
Always clear your meds and supplements with your doctor. Or see the nutritionist at the hospital.
Pain management may be a life-long issue. See a specialist
Learn what constitutes a symptom that needs immediate attention
Skeletal events may progress despite continued treatment.
Mobility issues pose serious challenges to myeloma patients. Be careful of falls. You may fall because of a number of other factories, including vision,
Kidney dysfunction is one of the common features of myeloma, but it isn't always the myeloma.
Renal dysfunction and renal insufficiency are common clinical features. Enjoy the outdoors, but don't get dehydrated.
Sexual dysfunction is exacerbated by chemo. But it may have been going on before, and you just didn't talk about it.
Then she talked about the Seasons of Survival and the issues related to them. Particularly extended survival.
Extended survival: watchful waiting, consolidation, or intermittent therapy
unexpected new long-term complications
Long-term maintenance for survivors: Quality of Life
Permanent survival: "cure"
Finally she told us to "Just remember that it is all worth it. Every single day."
She closed her talk with Israel Kamakawiwo'ole's "Over the Rainbow." It was at that point that we all stood up and cheered.
We had a working lunch today. Box lunches and the opportunity to ask Dr. Durie questions. He patiently stood at the front of the room--it seems he never eats lunch--while we chowed down on sandwiches and pasta salad and apples and giant chocolate chip cookies.
Dr. Durie answered questions about
how long to take Aredia and Zometa
patients with myeloma and amyloidosis
how often he sees patients without bone involvement
whether or not to use anti-inflammatories
new treatments for neuropathy
long-term side effects of steroids
promising clinical trials
what to be careful of when having hips or knees replaced
when to start treatment for smoldering myeloma
can ONJ be treated, and will it ever go away
I know everyone wanted this session to go on forever, but we had more to do. Thank you, Dr. Durie. You rock!
In this session, the facilitator of this meeting, Alan Kumamoto, talked to us about--guess what--facilitating! Sounds easy, but it isn't. How do you keep a group running smoothly, keep everyone motivated, keep yourself from going crazy in the process.
First he asked the group what a facilitator does. Some of the answers: Leads. Enables. Coordinates. Includes everyone in the conversation.
He presented an interesting take on the natural lifespan of a group. He likened it to a person and he broke it down as follows:
Prenatal This is the first stage. Someone is thinking about forming a group. Hasn't happened yet, but it is a gleam in someone's eye.
Start up (launch) At this stage you need a little help from
older siblings, like the more established groups at the summit
Growth He classified this as the Junior High stage. Sometimes those are experimental years. And sometimes we need to be reminded of things that need to take place for us to be successful
Maturity The group has existed for a while Delegation of responsibility and things are running smoothly
Decline Need help to re-energize We are always trying to avoid decline
He stressed that the care and feeding of a group requires planning and organization to keep your members engaged and motivated.
You need a mission statement
You need guidelines
You need the opportunity for R & R as a group, like an Annual Retreat (can be picnic, celebration)
Have a calendar
Develop and address book
Expert vs Partnership
Make sure there is Succession Planning
Delegate responsibility within group
Identify co-leaders (but also identify who's in charge of what area)
Don't forget to show appreciation and share the satisfaction
This is really important, because all the planning in the world means nothing if you don't implement Schedule the meetings on a regular basis because your group needs face time
Don't operate in a vacuum. Make time for feedback, get it, and accept it.
This is about doing the real work
This is about figuring out how are you going to do all this
How engaged are they?
A lot to consider, as these points address the challenges of maintaining a group, and give us specific pointers for making ourselves better leaders.
This session was an opportunity to brainstorm. First the leaders were divided up by the size of their groups. Robin pointed out that sometimes the leaders of small groups feel intimidated by the accomplishments of the older, larger groups. So they were divided into small and large groups and each group of groups, as it were, set about to identify the benefits of their type of group and the challenges.
Let's talk about the LARGE GROUPS first:
Maintaining attendance when members are too sick or too well (patients in remission want a break), when the weather or the distance works against you.
Marketing a group to get new members
Loss of members
Opportunities to Meet Those Challenges
Have a newsletter template available to the groups for their use
Check in on patients who have been absent
IMF website to feature Support Group of month
Possibilities for virtual meetings using Webex, Skype, FreeConferenceCall.com
Create flyers and distribute to hospitals, community centers, etc.
A Meet your Members feature in the newsletter or on the IMF website
Then the SMALL GROUPS had their say
First they talked about the benefits of being a small group:
The meetings are more intimate/personal, with more time for TLC
More time/more flexible/less structure
More time for a guest speaker and for caregivers
Easier to find a meeting location
Then they addressed the challenges and how to solve them:
Continually remind group if it's a problem
Newsletters: no-identification of names
First this has to be acknowledged in the group
Meet less often
Create a printed introduction and distribute i
Limit to full introductions to new people
Use color-coded name tags
Use the IMF for mailing help to advertise meetings
Print business cards and flyers, and place them in Doctors' offices -Cancer Centers - with Social Workers
Use local media outlets (Newspaper, TV, Radio), friends, word of
mouth, health fairs
Take advantage of the IMF website to promote activities and advertise when the IMF's Patient & Family Seminars and Regional Community Workshops
Few members mean fewer volunteers for committees and other activities. How do you encourage involvement so that there is shared responsibility within the group
Find one key person to set the positive tone.
Survey the group to find out likes/strengths to tap into
Consider personal phone calls by 1-2 other members vs. email
Consider letting go at times if you can't do it all
Consider community leaders to get word out, or the ACS, LLS,
How to maintain attendance
Newsletters, emails, to announce meetings
Survey members on what topics they wish to have presented,
and what meetings should "look like"
Honor confidentiality of members
Create a non-threatening environment
For new attendee make a "buddy connection" for him/her
Serve food (grant dollars are available)
Decent sound system
Keep MM focus
How to deal with growing pains, such as outgrowing the facility
Periodically Divide Retreats + Caregivers
Time Limit on Speaking
Start looking for larger space
Break into smaller groups for discussion
Lengthen meeting time, but don't go over two hours
Create a 2nd group
Solicit group for input regarding solutions for too large a group
Dealing with Loss
Honor at next meeting
Leave an empty chair to symbolize the presence sill with you
Acknowledge the loss
Have a long time survivor speak to group to re-energize them
Give hugs! Heart 2 Heart
At this session two support group leaders from Halifax, Nova Scotia, Trish MacDonald and Julie Salsman, said we needed to change the way we hugged. That a true hug should be "heart to heart." They showed us how to do it, and then said that they end every meeting with a "heart to heart hug." No pun intended, but we took it to heart. I heard it repeated by them and others throughout the summit. What a lovely concept from two lovely women.
This is an important day for the support group leaders here at the Summit. Today is the day that we get down to addressing the challenges of running a group.
Millennium Celgene Onyx
The day opened with a very interesting round robin. We broke up into groups and heard presentations on key myeloma drugs--what is available and what's in the pipeline--by three myeloma pharmaceutical companies: Celgene, Millennium, and Onyx.
Jeffrey Elbl, Medical Science Liaison for Millennium gave us an update on the Vista trial (Velcade upfront in newly diagnosed patients). Analysis after three years confirms the overall survival benefit of Velcade added to melphelan and prednisone. He did say that the results show that the overall survival is better if Velcade is in the mix at the beginning rather than adding it later. He then talked about Subcutaneous Velcade, which everyone was interested in. He talked about the Phase III trial to show that Sub-Q Velcade was not inferior to IV Velcade. And what the trial showed was that it was equivalent to IV Velcade in all aspects, effectiveness and side effects, except for one area: peripheral neuropathy (PN) was substantially lower. We knew this going into the session, but it was impressive to see the numbers.
The final session was with Dr. Joseph Leveque, VP of Medical and Scientific Affairs at Onyx. Neuropathy is clearly the boogieman here, because one of the major benefits of their drug carfilzomib, which has been fast-tracked by the FDA, is that it is nearly PN free. Add to that that it has a 19% response in patients refractory to Velcade. The ASPIRE trial (carfilzomib, revlimid and dex) is a currently-recruiting Phase III trial looking for progression free survival based on data from a successful earlier trial. Dr. Leveque also introduced Jennifer Sharretts, Head of Patient Access and Reimbursement, who talked about their Patient Access Solutions Program and their Enhanced Patients and Caregivers Service.
Time for a break and then on to the Large Groups/Small Groups session.
After a fun mental exercise led by facilitator, Alan Kumamoto, Dr. Durie presented a summary of the outcomes of the discussions at the Second Imternational Myeloma Working Group (IMWG) Summit, recently held in London. First he explained the value of the collaborative effort that is the IMWG, and then he went on to talk about the six issues they addressed and whether there was consensus or not, and what consensus represented within the group. The six issues were
Diagnosis and management of high-risk myeloma
Sequential vs Curative Strategies: Testing 2- vs 3- vs 4-drug combos
Role of early transplant
Maintenance or consolidation
Integrating new and existing drugs into the myeloma treatment paradigm
Risk stratification in myeloma
The Support Group Leaders as a whole were very interested in this presentation, despite the fact that it was very esoteric. Why is this, you might ask? Well, I have found that myeloma patients in general, and the support group leaders in particular, are very well-versed in the details of treatment, response, relapse, maintenance and so on. When I worked for the NCI's Cancer Information Service, I had a woman tell me that her doctor told her she had garden-variety breast cancer. And she accepted this!
Well, no doctor I have every heard speak has ever tried to tell myeloma patients anything even remotely like that. I am not sure if anyone tried if he (or she) could get away with it. Most of the support group leaders here have attended the IMF's Patient & Family Seminars, where the top players in the field of myeloma research present current fields of study in language we all can understand. Most read the literature, and follow the work of the IMWG.
Dr. Durie will cover the Summit outcomes in his blog, so I am going to move on to what really caused their ears to prick up. He began to talk about the search for a cure. It seems at the Summit, Dr. Russell from the Mayo Clinic presented a talk on oncolytic virotherapy. Myeloma cells killed by a virus assisted by interferon. And Dr. Durie said this is a little like the concept of the black swan. He discusses this in his blog. Tradition says that if we cannot conceive of a black swan, we will not go looking for one. We have to be open to all possibilities--to the "highly improbable." We have to be willing to run down dark alleys in the search for light. And if using a virus against myeloma can be shown to be effective in mice, then we need to follow that possibility. We need to be open to the concept of a finding a cure.
At the end of the day, Arin Assero, Director of IMF Advocacy, introduced
the group--who included as I said before--many new leaders, to
advocacy. What is it? Why is it important. And then members of her team,
Meghan Buzby and Christina Vargas, held the first All-Star Advocacy
Oscars, presenting statuettes to IMFers who had gone to their state
legislatures or Capitol Hill to testify successfully on behalf of drug
oral parity bills.
On the red carpet, beneath swaying spotlights, Michael and Robin Tuohy, Sue and Rob Enright, Caethe Goetz, Jerry Walton, and Jack Aiello received awards, Congratulations to them all.
Now it is time for all to relax and have some dinner. I am looking forward to talking with more of the great people who have gathered here. I promise (!) I will have pictures tomorrow.
The Summit has started and it is so great to see the people I met last year. And, what is really interesting is that there are so many leaders of new support groups.
Caethe Goetz, who just had a stem cell transplant, is here. She looks good!
Tamy Smith and Modenia Black
And Modenia Black, from Richmond, Kentucky, brought her co-leader, Tamy Smith, with her this year. They are wearing T shirts that say "Fearless in Flight." That's because at every support group meeting, they decorate the room to look like a travel destination. They print tickets, and serve the local food. Every meeting is a flight of fancy. And they call the group "Fearless in Flight." A friend of theirs, Jerry Williams, was so inspired by them that he wrote a poem for their group. They read it to us, and it was very touching. Modenia and Tamy may be new support group leaders, but they have got it going on!
But before I go back to the meeting, I want to quote Kati Rosten, leader of another new-ish group in Redding, California. Kati has had a challenging year, but she told me, " I had to come back to this meeting. It just builds me up, and then I can go back and help my group. They lift me too, but this helps me lift them." I couldn't say it better, Kati.
I will have some great pictures later, but for now, back to the meeting.
I am Abbie Rich, Web Producer for the International Myeloma Foundation. I am here in Dallas for the 12th Annual Support Group Leader Summit, being held at the Four Seasons Resort. I flew in last night on the same plane as the San Diego Surge, a women's football team. Yes, I said football and not in the European use of the word. American football. They are playing Boston for the championship. Go Surge!
The Support Group Leader Summit is a unique and very special event. Gathered here at the hotel are support group leaders, most of them patients and caregivers themselves, who are meeting to address the issues they face in running a support group. They are also gathered here to be honored by the IMF for selflessly working to help thousands of myeloma patients around the world.
The Summit has not officially begun. I am going downstairs to help greet everyone. More to come...
Professor [Luc] Montagnier is convinced that crucial differences can be detected at the electromagnetic level in addition to methods using conventional sequencing and "chemical" testing which are central to the overall project.
"...it seems that understanding life at the sub-molecular and electromagnetic level is now possible."
What if the spectrum of colors in the rainbow reflect the range of energies which control life processes? Imagine, for example, if all the energies that regulate the body functions could be thought of similarly to different wavelengths of light. If so, we would be able to modulate the body at the level of physics and cure cancer.
As it turns out, electromagnetic research is ongoing. Results so far have shown that researchers are getting data on electric pulses from myeloma DNA versus normal DNA, and there is an article in the current issue of Science Journal on the electric pulses from E. Coli bacteria. While it is still too early in the process to have any clear evidence, it will be interesting to see where the study leads.
At this month's Patient & Family Seminar in Dallas, TX, I posed this question to the panel of myeloma experts: "What myeloma research would you conduct if you were given $100 million?" Faculty member Dr. Rafat Abonour, from Indiana University, responded to the hypothetical question with an absolute departure from what I expected to hear.
He said, "If I had $100 million, I'd give it to Brian Durie. I know he'd find a cure."
Since that moment, I have been contemplating what I would do with that kind of funding. While the International Myeloma Foundation's research program is focused on collaboration and results through translational research, our annual budget limits our ability to research every possibility that presents itself.
Recently, I was pondering the "Black Swan" approach to research, a term coined by philosopher and essayist Nassim Taleb. This theory dictates that one must be open to the "highly improbable" in order to make significant advances. Taleb explains that at one point, it was mistakenly believed that all swans were white. This idea did not change until somebody traveled to Australia and discovered black swans by accident.
But what if someone had predicted the possibility of black swans prior to coming face to face with one? What if the hypothesis that black swans could exist had not been summarily dismissed based on lack of evidence or relevant data? The result would have been the same - they exist; but, instead of happening upon the truth by accident, it might have been sought out and discovered earlier.
I believe that this approach applies to cancer research as well. Each week I read about new ideas in medical journals, on the web, or in newspapers that make me take pause and wonder "what if?"
What if these "out of the box" projects had enough funding to see them through? What if an idea without any scientific evidence or data to back it up, could actually lead to a cure? Would it be worth pursuing?
With that in mind, I have decided to begin sharing my thoughts on some of the projects I read about during the course of my week. Using my newly established twitter account (@BrianDurieMD) I will post links to interesting abstracts, articles, stories, and blogs about projects that I might fund with my hypothetical $100 million.
I invite you to follow me on twitter and revisit this blog as I continue searching for a cure. After all, who really knows what color the next swan will be?
You can follow along as Dr. Durie spends his hypothetical $100 million in search of a cure at @BrianDurieMD on twitter. Find the IMF online at @IMFMyeloma and on facebook at facebook.com/myeloma. And, if you are so inclined to make a contribution to the IMF's actual research program, we'll be more than happy to accept it at donate.myeloma.org.