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Live Coverage From IMF’s Multiple Myeloma Expert Panel Discussion Friday, December 3rd from the annual American Society of Hematology Meetings

Home/Uncategorized/Live Coverage From IMF’s Multiple Myeloma Expert Panel Discussion Friday, December 3rd from the annual American Society of Hematology Meetings

Live Coverage From IMF’s Multiple Myeloma Expert Panel Discussion Friday, December 3rd from the annual American Society of Hematology Meetings

Good evening from the Grand Ballroom at the Peabody Hotel in Orlando, Florida.  I’m covering the IMF’s ASH kick-off event, Key Myeloma Questions for 2010: Latest Developments int Diagnosis, Prognosis and Risk Assessment in Multiple Myeloma.

This should be of special interest to a cyber friend of mine, Thomas from Germany. Thomas contacted me three or four months ago asking this question: What enables myeloma cells to adapt to and eventually overcome treatment? Specifically, Thomas would like to know which of the many experimental, up and coming treatments may hold the key to overcoming this resistance.

A great question. Wouldn’t we all like to know!

Thomas, title of tonight’s program aside, I wouldn’t hold my breath waiting for the answers to your questions! But we can dream, right?

The program is starting. Dr. Durie, Medical Director with the IMF just finished his introductions.

Dr. Rajkumar with the Mayo Clinic is speaking now about the role of FLC Assays in measuring myeloma‘s progress. Sort of like using a blood test to find one’s M-Spike, except through the urine. Why? Because sometimes a serum (blood) test can’t identify and follow the presence of myeloma.

This is interesting: Dr. Rajkumar just reminded us that Dr. Kyle of Mayo Clinic many years ago established between 3-5% of the adult population in the U.S. will develop MGUS in their lifetimes.  Yet only 1% of patients with MGUS actually develop full blown, active multiple myeloma each year. That means a MGUS patient only has a 10% chance each decade of developing myeloma.

However, smoldering myeloma is a different story. A patient with smoldering myeloma has a 10% chance per year of developing active multiple myeloma.

Let me pause here and remind you this program is designed for oncologists and hematologists at the convention–not patients–so this can get pretty technical.  Dr. Rajkumar is stressing the importance of identifying where a patient falls on this MGUS/smoldering myeloma/active myeloma continuum, because you don’t want to start treatment too soon.

80% of myeloma patients can be identified through blood tests. Another 13% can be identified by testing the urine. That leaves 7% that are even more difficult to diagnose.

Now, Dr. Rajkumar has moved on to median life expectancies and risk factors.

This is disturbing. They are still using 44 months as the median life expectancy number for a Stage 2 multiple myeloma patient.

A chapter in my book, Living with Multiple Myeloma, describes how I dealt with this number–only my Mayo oncologist used 43 months as the number at the time.  One month’s difference over four months time is not acceptable! 

My regular readers should realize most experts in the field now feel this number has been extended to six or seven years–or longer–with the availability of new novel therapy agents like Revlimid and Velcade. As a matter of fact, even the very conservative Dr. Rajkumar just stated the average life expectancy for a low risk patient is ten years or longer!

But this is only among patients known as “low risk patients.” These patients don’t have risk factors like a chromosome 13 deletion or 14/16 translocation.

High risk patients still have an average life expectancy of two to three years. This brings the average down to–you guessed it–44 months.

But hold on. Dr. Rajkumar is now describing data from Total Therapy III.

This is a very aggressive therapy developed by Dr. Barlogie and docs in Arkansas at UAMS. They have had great luck extending life expectancy among low risk patients.  But unfortunately, Dr. Rajkumar just shared how little success Total Therapy has had in high risk patients.

Let’s put all of this in perspective by associating a face with the data. I am sitting next to a newly diagnosed patient named Danny. Danny was diagnosed in August. He is an otherwise fit looking, healthy gentleman in his late 50’s.

Danny introduced himself to me at dinner. He and his wife, Lisa, are both personable and charming. Danny recognized me from my picture in the Myeloma Beacon, which runs weekly at the beginning of my column, Pat’s Place.

Of course I was flattered–an easy thing to do! Danny invited me to join them at the meeting.  I gladly accepted.

So here I sit, mini-laptop in my lap, pecking away. Try and imagine how it feels for him to hear he is in the highest risk group, with a two to three year life expectancy.  Imagine how I felt.  A research scientist in the energy field, Danny didn’t seem to flinch.  We discussed it openly as the program progressed.

I found Danny to be very well informed.  One thing he does have going for him: His induction therapy using Revlimid, Velcade and dex has worked so well, his current M-Spike is only .1–which is lower than mine, I might add!

Why is this important? Because Dr. Rajkumar stressed how, if a high risk patient can achieve a complete response–or CR–then their prospects mirror those of a lower risk patient. In other words, it isn’t so important if a low risk patient ever achieves CR. But it is life or death for a high risk patient.

Potentially good news for Danny and his lovely wife! My point: Docs study and review stats and numbers and charts and graphs at these meetings. But each number, or dot on a graph, represents a real patient with a real family–something I try never to forget.

Tomorrow morning I will write lots more about the remaining portion of the program.

Feel good and keep smiling!  Pat