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Black Swan Research Initiative: As We Move Ahead, What Will We Learn?

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DurieBlog_plain.jpgThe Black Swan Research Initiative team has been busy since our spring launch. Team members are laying the groundwork for clinical trials and perfecting the extra-sensitive testing regimes that will allow us to measure minimal residual disease, identify pathways to cures, and improve treatments along the way. 

We already know where we want to end up--curing this destructive disease--but as we move ahead our key focus is discovering the best route or routes, as the case may be, to get us there. As the Hungarian physician and Nobel Prize winner Albert Szent-Gyorgyi put it: "Research is to see what everybody else has seen, and to think what nobody else has thought." 

As most myeloma patients are aware, researchers around the world are currently looking into causes and cures for myeloma. One aspect BSRI focuses on is, "Which protocols currently in use are perhaps already curing some myeloma patients?" The new diagnostic tools under development will tell us which therapies have worked best. This allows us to focus on specific types of therapies for each patient.

Since we know that there will be multiple strategies to achieve success, there are many aspects to consider. An important early question is: "when can we consider myeloma cured?" We are approaching this question by closely evaluating patients who have been in excellent complete remissions for 4 or more years already--some as long as 27 years!

Another aspect is how best to integrate a constant stream of new research results. Just this week we learned about a study identifying aging genes in myeloma, published in Nature Genetics.  It's an important study because one of the chromosomes the researchers identify is chromosome 17. We already know that the loss of the p53 gene on chromosome 17 during cell division is a prognostic factor for poor risk myeloma.

Okay, so where do we go with that? Well, further researching the impact of newly identified genes takes time--probably years. In the meantime, the BSRI team will be testing therapies which work well in patients with chromosome 17 problems.  The driving engine behind the BSRI is to look for unknown answers to the riddle of myeloma by implementing multiple projects at the same time. For example, coming up with a clear, precise definition for high risk or "ultra high risk" smoldering myeloma is a top objective of BSRI.  The research team in Heidelberg, Germany are key collaborators and have already used MRI imaging to evaluate the likelihood of progression in MGUS patients.  For smoldering myeloma as well, imaging can be used to identify patients at highest risk for early progression and thus eligible for potential early decisive treatment. Starting curative therapies early in the disease maximizes the chances of success.

"But how will the BSRI affect my myeloma?" patients ask. At this stage in our research, we do not know which types or stages of myeloma will benefit most or first. And, we cannot rule out what would be an especially wonderful possibility that there can be a "one-shot cure" that will work well for all patients!!

With the BSRI, multiple strategies give the needle in the haystack a chance to pop out. It's an exhilarating process! And one that I'm pleased to report is moving along faster than we'd originally anticipated. In the months ahead, watch this space for announcements of exciting BSRI partnerships and team members. 

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.

6 Comments

Hi Mark,

My husband and I live in Australia. My husband, who is only 53 years old, was diagnosed last week with multiple myeloma. I'm curious to know more about "allos therapy". He is about to undergo chemotherapy next week. I just want to know all the facts about this disease and more importantly what potential "cures" may be out there.

"One aspect BSRI focuses on is, "Which protocols currently in use are perhaps already curing some myeloma patients?""

I thought it was generally agreed upon that younger patients that do allos as part of upfront therapy and have a sustained molecular response (PCR testing) for 5 years plus are considered cured since the risk of relapse at that point is so low. If Black Swan is about curing patients why is there never any mention of allo transplant? I did an allo as part of my upfront therapy (8 months after diagnosis) and in first CR. I am glad I did not listen to the "conventional wisdom" and go the "never ending cycles" of Revlimid path and "hope" another cure is found. I think you should give credit to skilled allo doctors that have been using molecular testing and curing patients for years.

I would ask the same question which Jim Taylor asked. How can the Black Swan Research help those when they go in to relapse?

Hello,
I was in a research program there at the University in 2002-2003. I just thought someone might tell you that I have lived. I still have broken bones, and they are thin, but I get around. I recently took myself off all the pain narcotics, and now feel about the same. I would like you to know that you CAN CURE this awful disease.

I have had friends all around me, younger and older who have died from Leukemia. Couldn't stem cells help them out? I understand Leukemia is different than Multiple Myeloma, but blood is blood--platelets are platelets. Just asking.
Thank you for saving my life,
Carole Woods

Hello,
I was in a research program there at the University in 2002-2003. I just thought someone might tell you that I have lived. I still have broken bones, and they are thin, but I get around. I recently took myself off all the pain narcotics, and now feel about the same. I would like you to know that you CAN CURE this awful disease.

I have had friends all around me, younger and older who have died from Leukemia. Couldn't stem cells help them out? I understand Leukemia is different than Multiple Myeloma, but blood is blood--platelets are platelets. Just asking.
Thank you for saving my life,
Carole Woods

Dr. Durie states that"Starting curative therapies early in the disease maximizes the chances of success". To what extent does this rationale also apply to relapsed desease? Specifically, would current research support re-starting curative therapies at relapse (immediately it is recognised) to maximise the chance of success?

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