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

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. 

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! 

Pat

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."