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August 2012 Archives : Myeloma Voices

Looking for the Cure

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We have two Living Well with #Myeloma teleconferences coming up. Stay tuned for details! #LiveWell

Ist International Myeloma Working Group (IMWG) 

Myeloma Training Course:  Master Class

Day by Day Summary of Key Points

Day 1: Monday August 6, 2012

Reviewed the on-line resources of the IMF, including the iPAD APP (Myeloma Post) and website.
The 10 STEPS program was introduced in more detail and STEP 1--Know What You're Dealing With. Get the Correct Diagnosis--was presented as the course for Day 1.

  • The basic concepts concerning MGUS and SMM were discussed.  It was discovered that these are largely new topics for the Chinese M.D.s since they predominantly see and treat patients with advanced myeloma in their clinical practice.
  • Detection of MGUS and SMM at the time of routine physical examination was discussed.  This does not occur in China.
  • The classification for Low and High Risk MGUS and SMM was presented.
  • Key features are: 
    • presence of an M-component;
    • size of the M-component
    • and lgG versus IgA.
    • One also considers the FREELITE results and findings on bone marrow flow if available including immunophenotype, DNA content and S phase.
  • Distinction was made between the Risk of Transition from MGUS or SMM to MM and high or low Risk MM as characterized by FISH findings.
  • The potential antibody activity of the M-component present in MGUS and SMM was discussed, including linkages to skin, rheumatologic, autoimmune and neurologic diseases.
  • Finally, the causes of MGUS/SMM/MM were discussed starting with Michael Potter's pristane mouse model. It was noted that pristane is present in diesel exhaust and that many chemicals have been linked to the causation of MGUS/SMM/MM, including those present at the recent 9/11 event in New York City. [Note:  Later in the series potential viral causes were discussed]

Day 2, August 7, 2012

Dr. Joseph Mikhael presented STEP 2--TestsYou Really Need, and STEP 3--Initial Treatment Selection: Getting the Best Treatment

  • Emphasis was placed upon the need to not under- or over-use tests to diagnose, assess or monitor myeloma.
  • The Role of Serum FREELITE was discussed.
  • The particular role of imaging such as MRI and/or PET/CT was noted especially in the presence of negative x-ray findings and/or in the presence of non-secretory myeloma, extramedullary disease (EMD) and/or plasma cell leukemia (PCL).
  • The use of FISH findings to identify "High-Risk Myeloma" versus others was discussed in detail.
  • The details of how the Mayo Clinic "Myeloma Team" functions were presented, They were described by the Chinese M.D.s as "paradise" - a wonderful system with excellent infrastructure and staff support, which provides diagnosis and care, and conducts myeloma research.
  • Dr. Mikhael presented results of a recent molecular project published in BLOOD which identified fluctuating and evolving patterns (sequential clonal changes) or "CLONAL TIDES."
  • Dr. Mikhael then proceeded to review the options for frontline therapy for transplant and non-transplant situations.
  • He discussed how risk is stratified using the mSMART system.
  • The basis for various selection options was reviewed based upon current data.
  • In general it was noted that a three-drug regimen is now preferred, although the pros and cons of two-drug versus three- or more than three-drug regimens (such as the four-drug "Evolution" protocol) must be evaluated.

Next week: More from the IMF Master Class

SGLSummit_app.jpgSaturday 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!

I will let Pat from the Nature Coast, Florida group tell you himself about his experience at the Summit. He wrote about it in his blog entitled "This Year's Support Group Leader Summit in Dallas Truly Changed My Life!"


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...)

Looking for the Cure

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Missed the Kyprolis teleconference last week? Listen to the archive on the IMF website: t.co/AkNlfx8y #kyprolis #myeloma

Looking for the Cure

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Great seminar in Boston this weekend so far. Thanks to my colleagues Drs. Anderson, Drake, Jagannath, & Richardson for their participation.

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 precede myeloma.

A transplant eligible patient wanted to know if and when he should have a transplant. 
Dr. 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 issues.


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.

What about neuropathy? 
Neuropathy 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 country?
Raise the educational level in the community. Take the IMWG Guidelines to your doctors. 


We Owe It To Ourselves To Get Involved


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 cancer patients.

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. 

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Ride Your Therapy Horse Until It Drops!

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Late last year I met a 19-year multiple myeloma survivor at the American Society of Hematology (ASH) meetings in San Diego.

She was an elderly African-American woman who seemed to be in surprisingly good health.

As I often do when I meet any long-time survivor, I asked her what her secret was for living so long. She thought a moment and said, "Therapy is like riding a horse."

"A horse?" I asked. 

"Like riding a horse," she repeated a bit mysteriously. "You should ride that horse until it drops--then wait for it to get up, and ride it again!"

As we talked some more, I began to understand her point. Patients should use a therapy for as long as they can, then go back to it and try it again and again until their doctor is sure that they have gotten every possible day--or mile--out of the drug or drugs that they've been using.

She explained that there are only so many myeloma drugs available to use at any one time. She felt that getting the most out of each of them had added years to her life. "And I've been lucky!" she said. "Just when I thought that I was running out of time, another drug came along to help me live a while longer."

My conversation with this wise and elegant survivor changed the way I think about myeloma therapy.

So many of us can be in a hurry to change horses midstream, abandoning a therapy that might not be working as well now as it did before. But that can be a mistake.

Even if your numbers aren't going down anymore--maybe they're stable, or even rising slowly--squeezing every precious day out of your therapy can add up to a lot of extra living in the end.

Who knows? A few extra months here and there might make the difference between becoming a statistic or living to fight another day! Wise advice, indeed!

Feel good and keep smiling! 


Myeloma Caregiver Wife Blog: Examining the Future

kimmclaughlin_app.jpgNobody can really guarantee the future. The best we can do is size up the chances, calculate the risks involved, estimate our ability to deal with them and make our plans with confidence.
- Henry Ford II
It was last August, and I knew that bad news was on its way. Since Alan had been wanting a trip along the Oregon coast, we thought this would be a good time. It was before the bad news was delivered, so we could play without having heard it yet. 

We escaped the heat of Portland, stayed in the "Steinbeck Room" at the Sylvia Beach Hotel in Newport, where every room is dedicated to an author and decorated accordingly. Our room had shelves of botany samples in jars a la "Cannery Row" and a mural of the truck from "Grapes of Wrath" with the headlights doubling as reading lights for the bed.

I skim-read "East of Eden" for the racy parts, bought salt-water taffy (did you know they make a chipotle flavor?) then we spent the next night in a Bed and Breakfast in Florence recommended by one of Alan's oncology nurses.

But my vivid memory is of what happened at Waldport. This was the day of their modest Farmer's Market, and among the usual vendors of fruit, soap, earrings, and cookies, was an empty booth sporting primitive wooden heads and a sign "Palm Readings $5."
I was intrigued, so we waited for the reader to return. Her name was "Steel," a tan, strong woman with intense blue eyes. She told me that her readings were a combination of what she saw in the hand and intuition. She looked at my hand with a magnifying glass as she told the meanings of the lines in my palm, and the lines I was apparently missing. She said, "Something happened about five years ago that changed the direction of your life permanently."

She took a lot of time with me. When she was done, she asked if her reading felt accurate, and I told her "My husband has cancer, and things aren't going well."

She asked Alan if she could read his palm for free--as a gift.
Alan said "Yes," with a little coaxing, and she talked to him about his spiritual journey, and embracing what comes to him rather than chasing after growth. 
From the time we left Steel and the market until we returned home, most of our conversations were about what she had said. We pulled the car over to a viewpoint at the ocean and talked about some of the things that had gotten too scary to talk about... Memorial services, wills, computer passwords, financial skills (or lack of them), advance directives. 

We each felt our 'readings' had been made by an insightful woman who had given us a prism for looking at what we both knew, but hadn't been able to talk about until now.

When we returned to Portland for Alan's appointment, Dr. M told us that the SPEP, the bad numbers, had gone up. I had known this would happen because treatment had been postponed much of the previous month, in order to give Alan's blood counts a chance to recover. Alan was weak and couldn't walk without his cane and my arm. Everything but the Dex had been stopped.

Dr. M is also a person who guides using a combination of what he sees and intuition of how best to share it. I noticed that the last thing Dr. M said at a clinic appointment was usually a quiet hint about something he expected to become worse. At one point, I mentioned to him that I'd noticed this, and he started making the 'quiet warnings' the second-to-the-last thing he said to us. His is a gentle way of sharing difficult information and it worked well for us.
I hope each of you is fortunate in the guides who are looking at your future. 

(The photo is of Zoltar, in front of an Ice Cream Parlor in Florence, Oregon)

SGLSummit_app.jpgThis 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 reasonable.


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."

Support Group Leader Summit 2012 - A BIG Surprise

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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 wonderful work.


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

The Faded Bracelet

jimomel_app.jpgThis is a story sprinkled with equal parts of sadness, admiration, and inspiration about a rugged Nebraska farmer and his courageous approach to myeloma. Glen Potter was no stranger to myeloma when he was diagnosed in 1999.  His father had died with it. His response to the shocking diagnosis was, "Well, how do we fight it. What do we do first?"  He had an auto transplant in 2000 and was more or less on continuous treatment for the rest of his life, rarely mentioning his painful Thalidomide neuropathy, chronic fatigue, or innumerable long trips to Arkansas.

Glen was a member of my Central NE Myeloma Support Group for 10 years and rarely missed a monthly meeting. He wore his burgundy IMF bracelet continuously and was a constant spokesman for more myeloma research and better public understanding of this horrible cancer.  No one will ever know how many countless conversations were started by that burgundy bracelet.  As he cared for his cattle and grew his crops the sun eventually faded the constant companion on his wrist from burgundy to pink to tan to off-white. It was as much a part of him as his white Stetson hat. It is impossible to tell you what a truly nice man he was...unbelievably optimistic, supportive, and a friend to everyone he ever met.

Our group was planning our annual summer evening picnic and it was to be on Glen's 65th birthday.  I planned to have a special cake from a local grocery and nearly 40 voices would sing "Happy Birthday" that night. Food plans were made, tables and chairs secured, and our speaker from Omaha was anxious to attend.  A few days before the party Glen was playing with his grandchildren.  His family reports that he felt well, but in an amazingly short time he began to feel sick. High fever  forced him to the ER where he was admitted.  Despite IV fluids and supportive care he rapidly deteriorated and within hours was put on life support technology. Cardiac irregularities and renal failure quickly followed, most likely all caused by overwhelming sepsis.   Despite the best of care, Glen died.

Our group was devastated. Glen's funeral was scheduled for Saturday, the day of his 65th birthday and the day of our summer evening party which we obviously cancelled. The day before his funeral his daughter Shelly called to ask me if I had any more of the burgundy IMF bracelets which I had given to her father, the one faded nearly white with age and exposure. She explained that Glen would be buried with that faded bracelet still on his wrist, and she wanted to hand out new burgundy bracelets to all the close family members. The Potter family hates myeloma as much as anyone possibly could, and they plan to continue spreading the word about multiple myeloma. Their new burgundy bracelets will start many conversations. Glen's commitment to fight this disease and find a cure will continue long after his death. At his funeral the church was full and overflowing with people.  In several eulogies myeloma and Glen's battle with it were mentioned. Myeloma. Not cancer.....myeloma! Too often when people with our disease die, cancer is listed as the cause when it is "myeloma" which needs to be emphasized for better public awareness.

Glen Potter lived and died with myeloma for 13 years, but he never gave it a chance to rule his life. By his IMF bracelet, and the bracelets his family will still wear, he will continue to silently advocate against our awful disease.

patkillingsworth_app.jpgEnergizing. Life changing. Hopeful. All adjectives that can be used to describe my experience at this week's IMF Support Group Leader Summit in Dallas, Texas.

I must admit that I was reluctant to attend this year's meeting. I had lots of excuses. I had just returned from speaking to a pair of support groups in L.A, and I knew I was returning to California again this Thursday to speak to a group in Orange County, so I'm way too busy. I'm only one of three co-founders of our Nature Coast (Florida) Multiple Myeloma Support Group - and probably the least active at that. Or how about his one: my platelet and white blood counts were very low and I wasn't feeling well. Pick an excuse, any excuse.

Thank God the IMF's Support Group Director, Robin Touhy, encouraged me to go!

It was an amazing experience! Dozens of support group leaders from all over the U.S. and Canada attended, too. Some were first-timers, like me. Others had attended for many years.

But we had two important things in common.  We were all myeloma patients or caregivers, and we all volunteered our time this weeke
nd--and each month--to give our time and help our fellow survivors.

I was impressed with updates provided by IMF Chairman and Co-founder Dr. Brian Durie and a half dozen or more medical experts. Highlights included in-depth presentations about state-of-the-art advances in imaging, treating high-risk myeloma patients, and a series of updates by leading medical spokespersons from Millennium, Celgene and Onyx pharmaceuticals companies.

I was surprised to learn that Onyx, makers of the newly FDA approved proteasome inhibitor, Kyprolis, is already testing a similar oral chemotherapy drug. Moreover, I know from first-hand experience how exciting Millennium's new Sub-Q administration method for Velcade can be.

After taking Velcade by IV for only ten weeks, I was close to being forced to discontinue my treatment six months ago. The peripheral neuropathy was simply too intense. But about that time, my myeloma specialist switched me to Sub-Q Velcade.  It was like a miracle! My neuropathy didn't get any worse, I felt better and I spent far less time at my local infusion center, too.

Additionally, Millennium is also close to submitting its new version of an oral proteasome inhibitor, MLN9708.

But as exciting as all of this was, the human side of the gathering made the biggest impression on me.  What a wonderful, selfless group of dear friends I made this past weekend!

Even though it was my first Support Group Summit, I knew a number of the group leaders from visits I had made around the country to their groups to share my story with their members. And I knew most of the IMF staff from our trips together to American Society of Hematology (ASH) meetings in New Orleans, Orlando and most recently, San Diego.

We all worked hard, spending the weekend learning and sharing ideas together.

Sure, the pri
mary 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 what I hope will be life-long friends.

It was an experience I will never forget!

Feel good and keep smiling!  


Support Group Leader Summit 2012 - I Forgot...

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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 Summit.

They fund this meeting in full, and without their support the Summit would not be possible.

They are: 

  • Millennium; The Takeda Oncology Company
  • Onyx
  • Celgene
  • Amgen
  • Diplomat Pharmacy
  • Sanofi
  • Bristol-Myers Squibb
  • Marx Family Foundation
Our thanks to them for making this fabulous weekend possible.