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September 2012 Archives : Myeloma Voices

Can We Trust Our Doctors Too Much?


I met a wonderful woman recently at a support group meeting. Before and after I spoke to the group, she shared her experience with me, gushing several times that her new medical oncologist made her feel special.

He doesn't enter the room keeping one hand on the door while he pretends to listen to me," she said.

Apparently she had recently relocated from a larger metropolitan area to a much smaller, friendlier town in the Pacific Northwest. But the woman suffered from significant bone damage caused by her multiple myeloma. And she also mentioned several serious co-morbidities that would have me packing my bags and heading to see a big city specialist!

Considering that a number of other support group members had expressed disappointment with their local oncologists, I'm pleased for her. Crafting a good relationship based on trust of one's doctor can be a special thing.

But it can have a dark side. Blind trust in the guidance of any physician can become problematic for a multiple myeloma patient, especially if the physician isn't a specialist. And even then, a second opinion is almost always a good idea whenever we find ourselves facing an important therapy crossroad.

Bedside manner is important. But I will take a curt, hurried or difficult-to-understand specialist who will work with me to craft a new therapy course of action over a friendly, less well-informed doctor who tends to make decisions for me any day!

Several of my uncles were physicians. One of them was the chief of staff at a large western hospital. When my wife, Pattie, was first diagnosed with cancer 16 years ago, he advised me to "Find the most knowledgeable specialist you can for her, then do whatever it takes to get an appointment." He made no mention of how that physician and my wife might or might not get along. It was all about the insight and expertise her new specialist brought to the table.

Finding a medical oncologist that is ready and willing to help you coordinate your therapy is the cornerstone of building a solid healthcare team. My advice? Shop around until you find a medical oncologist that gets you. But make sure that he or she is willing to work closely with--and ultimately follow the recommendation of--one or more myeloma specialists.

Feel good and keep smiling!


IMF President's Year in Review

This October, the IMF will be celebrating our 22nd "birthday," and I am so proud of all that we have accomplished for myeloma patients, caregivers, and healthcare professionals. This past year alone has been one of incredible achievement for us, for which we are truly grateful. 

The IMF's fiscal year runs between October 1st and September 30th, which means that we are coming up on the end of the 2011/2012 fiscal year in a matter of days. As I look back over the past 12 months, it is amazing to see how many lives we touched through our programs in Research, Education, Support, and Advocacy. 

I've put together some interesting facts about the last 12 months at the IMF that I would like to share with you now. 

This past year, the IMF held: 
  • 4 Patient & Family Seminars and 10 Myeloma Center Workshops and Regional Community Workshops reaching more than 2200 patients and caregivers nationwide
  • 5 Teleconferences on topics ranging from emerging therapies to chronic and acute pain for more than 1800 patients
  • 2 Clinical Symposia, reaching nearly 1300 physicians and nurses
  • 2 Major Research Meetings, during which the future of myeloma research was discussed by the top myeloma investigators in the world

We also:
  • Added more than 30 titles to the growing library of informative publications we offer in multiple languages
  • Updated the content of our publications, and began a major redesign project to improve the overall readability of our booklets
  • Mailed 20,000 info packs to newly diagnosed patients, caregivers, and healthcare centers around the world
  • Answered more than 4,000 calls and emails to our toll-free Hotline (800-452-CURE)
  • Visited 95% of the 115 US myeloma Support Groups and held our 13th Annual Support Group Leader Summit
  • Restructured the IMF's weekly e-newsletter, "Myeloma Minute" to better serve the myeloma community with up-to-the-minute news on multiple myeloma
  • Successfully advocated for the FDA approval of new drugs for use in myeloma patients, and the passage of oral chemotherapy parity bills in 6 states!

In addition to our core programs and services, the International Myeloma Foundation introduced a number of new programs this year, including: 
  • The International Myeloma Working Group Conference Series - Held in conjunction with the 3rd Annual International Myeloma Working Group Summit in Amsterdam, the debate between two American doctors vs. two European doctors was live webcast and open to the public for the very first time.
  • The Myeloma Post - the very first myeloma app for the iPad 
  • IMWG Myeloma Master Class - An intensive educational course designed for clinicians who are specializing in myeloma

And that's only a snapshot of what the IMF accomplished this past year! We have big plans for 2013, and we could not have done it without the support of our donors. From the $25 tribute to the $50,000 sponsorship - the IMF relies on the generosity of others to make these things happen. 

Looking for the Cure

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Ist International Myeloma Working Group (IMWG)
Myeloma Training Course: Master Class
Day by Day Summary of Key Points

August 8, 2012
Dr. Robert Vescio 
STEP 4: Supportive Care: And How To Get It

  • The underlying biology of myeloma bone disease was presented
  • Dr. Vescio discussed the anti-osteoclast and potential anti-myeloma effects of bisphosphonates such as AREDIA�, ZOMETA� and Clodronate�
  • The Risk Factors for, and management of, ONJ were discussed. The current frequency of occurrence is approximately 3-5 % having been 5-10% only 5-10 years ago when there was much less awareness RE: Prevention and management strategies. A key aspect of prevention is to avoid tooth extraction for patients receiving bisphosphonate therapy. Expert dental consultation may be required to assess alternate management options. It appears that ONJ is rare in China (or rarely observed).
  • The benefits of vertebroplasty and kyphoplasty were discussed
  • A Range of other supportive care measures were discussed including:
    • Hypercalcemia management
    • Renal insufficiency or failure
    • Spinal cord compression
    • Infection complications
    • Hyperviscosity
  • As the Director of the Amyloid Center @ Cedars-Sinai Comprehensive Cancer Center, Dr. Vescio also discussed the biology, types , clinical features and management of amyloidosis both systemic and localized.
  • Cardiac amyloidosis was identified as the key high risk feature
  • It was emphasized to avoid simple oral MP (melphalan/prednisone) in treatment of amyloidosis
  • Conversely the value of VELCADE, REVLIMID and ASCT in selected patients was reviewed.
  • Review was provided by Dr. Yanchen Li from Chaoyang Hospital in Beijing

August 14, 2012
Bill Bensinger
STEP 5: Transplant: Do You Need One?

  • The Role of Transplant in 2012 was presented and discussed by Dr. Bill Bensinger
  • Options for Frontline induction pre-ASCT were again discussed. Regimens identified were:
    • VCD (Velcade/Cytoxan/Dex)
    • PAD (Velcade/Adriamycin/Dex)
    • VTD (VRD if available) (Velcade/Thalidomide or Revlimid/Dex)
    • Rd (Revlimid/low dose Dex)
  • The time of transplant was reviewed at length considering "early" versus "late" discussing the various PFS and OS outcomes
  • In general 4 cycles of induction were recommended before transplant, with a plan for transplant irrespective of Response in the absence of progressive disease. It was not recommended to continue or change induction with a view to achieving better response prior to proceeding to transplant.
  • It was emphasized that it is important to focus on quality of life (QOL) in considering alternative treatment strategies.
  • The standard preparative regimen for autotransplant is Melphalan 200 mg/m2.
  • A second transplant should rarely be considered as a planned tandem transplant. However, a second transplant can be considered if:
    • There is < VGPR with a first transplant and there was significant evidence of cytoreduction (response) with the first transplant.
    • If there is a > 2 year remission with a first transplant, especially if unmaintained
    • At relapse if there are limited alternative options
    • Earlier in the disease course if limited options exist
  • There was an extended discussion re: the pros and cons of post-transplant maintenance primarily in reference to the REVLIMID data in the IFM and CALBG trials. The doubling of PFS was noted as was the improved OS in the CALGB trial. Also noted was the increased occurrence of second primary malignancies (SPMs) - overall at about a 5-7% level in these settings.
  • Distinction was made between the rare 20 AML which is unfortunately usually rapidly fatal and the more common second solid malignancies which are typically well managed or curable and do not impact overall survival. Overall, the net benefit is therefore in favor of maintenance for a majority of patients.
  • In China, Thalidomide is available and is used for maintenance. VELCADE is also available, but too expensive for use in China. Revlimid is not yet available.
  • Potential novel transplant preparative regimens were discussed:
      • "VEL/MEL": VELCADE given prior to high-dose melphalan
      • Melphalan @ 280 mg/m2 using Amifostine as a protective agent
  • Protocols for stem cell mobilization were discussed including: G-CSF, G-CSF + Cytoxan and G-CSF + Prelixafor (MOZOBILTM) Mozobil is not available in China. Risk factors for "Mobilization Failure" were discussed.
  • Pre-transplant, it is important to identify and exclude patients with pre-existing MDS (can use Cytogenetics/FISH/FLOW analyses). Second harvesting can be carried out later in the disease course if necessary.
  • The very poor outcome with full allotransplant was noted. Although, rarely performed in the U.S.: it is still an option in China.
  • Overall guidelines for transplant were summarized:
    • Autotransplant: Still a standard of care if feasible
    • Allo transplant: Rarely indicated
    • Mini-Allotransplant Recommended for use in clinical trials for "High Risk" patients

August 9, 2012
Dr. Vincent Rajkumar
STEP 6: Response Assessment: Is Treatment Working?

  • Dr. Rajkumar first reviewed the basics of Response Criteria as outlined in the Uniform Response IMWG Manuscript of 2006.
  • Potential pitfalls were emphasized including
    • Relapse from CR or a very low level of M-component which requires both at >25% increase AND > 500 mg/dl increase on SPEP.
  • At higher levels of response the M-component increase be at least > 1.0 GMS/dl if lowest level of serum M-component is 5 Gm/dl
  • Dr. Rajkumar provided great caution about evaluating "responders" as a group, because many time dependent and other biases can account for improved outcomes
  • In addition the fact that improved progression free survival (PFS) may not lead to improved overall survival (OS) was reviewed in detail with examples from numerous trials
  • It was also emphasized that "High-Risk" and "Good Risk" patients must be identified and evaluated separately.
  • Surrogate markers were discussed. An M-Component is a surrogate marker which is usually quite reliable, but ultimately is only as indirect indicator of myeloma disease status. There can, for example, be light chain or Bence Jones escape when the Serum M-component can be misleading.
  • Cytogenetics and FISH, as well as, Gene Expression Profiling (GEP) are key prognostic factors which the Mayo Team has organized as part of the mSMART program available on the web.
  • A simple recommendation for 2012 is:
    • High-Risk: if feasible consider use of VRD (Velcade/Revlimid/Dex) induction
    • Standard (including Low) Risk recommended
      • VCD (Velcade/Cytoxan/Dex)
      • Rd (Revlimid/low dose Dex)

As Key Choices

  • In other situations consider:
    • DT-PACE for plasma cell leukemia or extramedually disease
    • VCD/VRD/VTD/PAD all to be considered for Relapsing Patients also
    • The current diagnostic criteria for Amyloidosis were reviewed
    • The current "Clinical Trials Program" at the Mayo Clinic was presented and felt to be an excellent and quite impressive impressive model for China.

Think Like a CEO to Build a Winning Health Care Team


You have been diagnosed with multiple myeloma.  You and your family are shocked, scared and shaken. The initial reaction--by you and your doctor--is to start treatment immediately. 

STOP! Time is rarely of the essence following a multiple myeloma diagnosis. Multiple myeloma tends to be a slow moving, plodding yet unstoppable disease. A few hours, days or even weeks are unlikely to affect your overall prognosis.

Even if you have already started treatment, it is never too late to re-evaluate your treatment plan. Have you considered a second opinion? Why are you and your doctor doing what you are doing?  What are your expectations and goals? When is it time to change course, continue with your current treatment regimen or watch, wait and do nothing at all?

These are big decisions--and very difficult to make on your own, even with the help of a caregiver.Unlike some other cancers, myeloma patients often face overwhelming treatment options. Most work at first.  But what then?  Do you undergo an autologous stem cell transplant now, or wait?  If you do decide to transplant, do you start maintenance therapy soon afterwards or wait?  When do you resume treatment if and when your numbers start to rise again?  And which drugs should be used to best slow your relapse? 

By assembling a comprehensive health care team, you can surround yourself with experienced, qualified health care professionals to help you make the treatment choices which are best for you. 

Think of yourself as the CEO of a major company. Or a general contractor of a building project. Are you into sports? How about acting like you are the owner of a professional sports team? Or the president of the PTA?

Regardless of which leadership style you emulate, remember that powerful leaders in important positions surround themselves with experienced support staff. You should do the same. Here are the positions you need to fill as you create your winning support team:

�      Primary Caregiver.  This may be the most important position.  It can be a spouse, family member or friend.  While it is best to if one person fills this role, it can be done by a combination of people.  Your primary caregiver is responsible for reminding you to take your meds and help you get to and from medical appointments--and to take careful notes and help you ask questions at those appointments.  They are also there to provide emotional support and help you coordinate your health care team.

�      Multiple Myeloma Specialist.  This can be an oncologist or hematologist, preferably from a regional or nationally known cancer center.  Once you decide which treatment course to follow, this specialist becomes a consultant, keeping your team on course, or helping you make course corrections as necessarily.

�      Medical Oncologist.  This is the doc you see regularly.  He or she consults with your specialist of choice, working together to make your day-to-day treatment decisions. 

�       Oncology Nurse(s).  Let's face it;  oncology nurses run the show!  They keep track of prescriptions and remind the doctor about day-to-day details.  They are the ones who administer your IV and help minimize treatment side-effects.  Oncology nurses coordinate your labs and make sure you are doing OK.  In my next life, I am going to be an oncology nurse!  These brave, skilled women (and men!) have the difficult task of working directly with the patient day to day. They rock!

�      Internist or Family Doctor.  Don't let cancer dominate your entire health care world. You still need a regular doc to handle non-cancer -related issues.

�      Support Group.  Multiple myeloma support groups share all kind of details and data. Learn how other patients cope with side effects.  Learn what other patients are using and why.  Your support group members will become like family.  They understand what you are going through. 

�      Family and Friends.  Your friends and family want to help--they just don't know how--and you can't expect them to read your mind.  When they offer to help, try and assign them small, simple and achievable tasks.  They will feel good about themselves--and you will feel better knowing you have people surrounding you who love and care for you.

You don't have to stop there!  Add a nutritionist and/or naturopathic MD. How about a massage therapist or acupuncturist?  Try a physical trainer or therapist. You can make your medical team as large or small as you like. Keep it simple or expand it as you go--it's up to you--you are your own team's leader!

Of course, you won't be able to build a winning medical team overnight. It may take months or years to develop. And, like a good team owner or coach, you may decide to make changes as time goes on. Remember, winning owners change coaches and team personnel as needed. Team chemistry is important. If someone isn't contributing, or can't get along with other team members, find someone who can!

Good luck building your winning health care team!  Come on--I know you can do it--your life may depend on it. 

Feel good and keep smiling!