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Black Swan Research Initiative: Setting the Stage for Progress

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We know that the Black Swan Research Initiative is critically important, so we want to keep you up to date on our plans and progress. For many patients, their future care may depend on the outcome of our research, and we are often asked for answers before the research has even begun. Unfortunately, results are not immediate, but we do have an aggressive schedule, and we expect to have initial answers early next year about the role of MRD-zero--and why it's important to finding the cure.

What We Are Doing Now

We have already completed our work on how to define and identify MRD-zero clinically. Now we are working on standardized testing for MRD-zero, and we are looking back over previous studies to glean new information about MRD-zero and responses to treatment that may point toward a cure.

Qe are incorporating new information from other studies into our BSRI program. One example is the recently completed study on smoldering myeloma from our colleagues in Spain. We are also looking at new drug combinations already in clinical trials as a guide for our own next steps to find the cure.

Within the next two months we will have two in-person meetings of our international BSRI team: a mini-summit in New York in October and a full BSRI team meeting at ASH in December. While we work together continuously via phone and email, these face-to-face meetings give us the opportunity to exchange ideas, challenge concepts, and drive the project forward.

We are finalizing contracts for partial funding for BSRI. This is essential for acquiring the most sophisticated analytical equipment needed for our research, and to support the teams of researchers.

Personal donations are still the mainstay of the work at the IMF and we are planning to include BSRI at our annual fund-raising gala in November.

What You Can Do Now

For some patients, waiting is not an option. What can you do now? The most important step you can take for yourselves and to help your fellow patients is to take part in clinical trials. More than 1,300 trials are listed on www.clinicaltrials.gov. Not all are still recruiting patients, some are for a specific subset of conditions, but that's a lot of patients needed from a relatively rare cancer. And of course, we hope you'll be available to take part as soon as our clinical trials begin.

Also, we hope you will please consider donating to the Black Swan Research Initiative. With your help, we will soon bridge the gap from long-term remission to cure.

Dr. Durie sincerely appreciates and reads all comments left here. However, he cannot answer specific medical questions and encourages readers to contact the trained IMF Hotline staff instead. Questions are answered with input from Dr. Durie and/or other scientific advisors and IMWG members as appropriate. To contact the IMF Hotline, call  800-452-CURE, toll-free in the US and Canada, or send an email to hotline@myeloma.org. Hotline hours are 9 am to 4 pm PST. Friday summer hours are 9 am to 3 pm PDT. Thank  you.

2 Comments

Thank you for your interest.Abstract # 1943 is , as you say a phase 1-2 trial with Immucin as a vaccine. These are intriguing early data -- but too soon to comment. There have been so many efforts at vaccine therapy over the past 30 years without success that one needs to be very cautious and await follow up in patients.

Dear Dr. Durie,

Thank you for the overview of papers that will be presentated at ASH 2013.

Could you also comment on abstract #1943 regarding the vaccine ImMucin that has been
used to treat myeloma in a clinical trial in Israel? I first learned about ImMucin via
an IMF "Myeloma Minuite" email notice.

Any information you can provide, would be greatly appreciated.

Yours sincerely,

Gratia Nakahashi

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