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Myeloma education key to becoming a long-lived survivor!

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Myeloma education key to becoming a long-lived survivor!

I had the opportunity to participate in and listen to two different educational programs this week.  Monday I volunteered to host and speak to a group  fellow Moffitt Cancer Center patients, caregivers and family members.  Over 100 attended a three part educational event.

Dr. Tran Moffitt_630Neurosurgeon Dr. Nam Tran spoke to the group about bone disease treatment options.  Its amazing what these surgeons can do!  I’m trying to limp-along and avoid surgery on my hip and spine.  Pros and cons for diving-in and seeking surgical relief.  But I must say Dr. Tran’s presentation peeked my interest and rekindled the possibility I might consider one or both surgeries.

After his presentation, attendees had a choice to attend four different break-out sessions:  Myeloma specialist and researcher, Dr. Ken Shane, covered the basics in Myeloma 101, my myeloma specialist and BMT lead doc, Melissa Alsina, spoke to those considering stem cell transplantation, Dr. Rachid Baz spoke about using novel therapies after relapse and I shared ideas for coping with multiple myeloma from a patient’s perspective.

What a great group I had!  We exchanged ideas and answered questions from 20 patients and familiy members.  Things actually got a bit off-track, focusing on the key decisions patients are forced to make: when and whether to transplant, maintenance and the role–and toll–of dexamethasone.

The last 45 minutes was spent enjoying a delicious catered meal, courtesy of our friends at Millennium.  I met a number of readers and some I have exchanged emails with over the years.  So great to put a name with a face!  I learn so much from being involved in gatherings like this.  I always feel renewed and more motivated than ever to help my fellow myeloma patients and caregivers anyway I can.

Kenneth-AndersonTuesday I listened in to a LLS sponsored a webcast featuring Dr. Ken Anderson from Dana-Farber up in Boston.  Myeloma-The Latest on Research and Treatment from the American Society of Hematology (ASH®) Annual Meeting lasted well over an hour.

Having attended and reported on ASH, I was aware of most of the content Dr. Anderson covered.  But I was interested to see what therapies he felt were most promising following the meetings.

Dr. Anderson is always so optimistic!  He was enthusiastic about a number of different study results.  But one thing was clear: combination therapies are clear-cut winners!  He especially liked the combination of Revlimid and the antibody, elotuzumab.

Reading between the lines, I got the feeling Dr. Anderson shared my assessment that researchers are making broad, incremental gains but no blockbuster therapies are waiting in the wings.

He did stress how wonderful it will be when Millennium’s new oral proteasome inhibitor, MLN9708, is available and combined with Revlimid and dexamethasone.  This would allow patients to be on an effective therapy combination that is 100% oral.  He was audibly enthused about how convenient that would be for patients.

And Dr. Anderson used the word “exciting” to describe pomalidomide.  Again, not only because he expects the new drug (POMALYST) to be effective, but he has found the drug to have fewer side effects than Thalomid or Revlimid.

Dr. Anderson is all about patient quality of life.  Great guy!

I’m sharing this with you today to help make a point.  Whenever I speak to a group, I stress how important it is for myeloma patients and caregivers to learn as much as they possibly can about their cancer and treatment options.  Because unlike many other diseases, multiple myeloma therapies are varied and ever changing.

Spending time online here and at other important educational sites like the IMF’s Myeloma.org site is one important way to do this.  And their are a few up-t0-date books (like mine!) that can also help.  But getting out to support group meetings and/or attending educational programs like the one I hosted at Moffitt are vitally important, too.  Interacting with other patients and caregivers gives one access to invaluable information you can’t always find online or in a doctor’s office. Plus, there’s the added benefit of making good friends and banding together for emotional support.

There’s a growing body of evidence supporting the theory that well educated patients that see a myeloma specialist at cancer centers specializing in treating hematological disorders do live longer–much longer.  More about this in the near future.

For now, thanks again Dr. Anderson, Dr. Alsina, Dr. Baz, Dr. Shain and Dr. Tran for graciously sharing your time to help us live longer and better lives!

Feel good and keep smiling!  Pat