Choosing your myeloma specialist

| John Auerbacher

I am reminded at ASH of the old saw as to how the economy really works – the answer is that 100,000,000 people get up every morning and go to work. That is how it looks in San Diego. The enthusiasm and energy of the researchers, pharma people, nurses, and doctors is tangible. The sessions are packed with people trying to grasp the latest research. They are rushing to get to the next presentation. There are young scientists deeply engaged by the field, as we saw Friday evening when the IMF presented them their hard-earned grants. A common refrain was how grateful they were to be able to continue on for another year. Great to meet these exceptional people from around the world. Support group leaders who attended ASH even 10 years ago have commented on how interest in multiple myeloma has boomed, in part due to the insistence of the IMF on collaboration among formerly competitive institutions.

SURPRISE (sort of): Doctors, even the myeloma specialists here at ASH, not only disagree about the appropriate treatment for a particular patient (as we saw Friday in the analysis of several hypothetical case studies developed by Dr. Durie), but many got some of the answers to multiple choice test questions wrong. This is scary for patients; let’s try to understand this.

The field is inordinately complex: new data pours out of researchers from many, many institutions, the plethora of newly-approved drugs has created a geometric increase in the combinations of medicines that could be used, and multiple myeloma seems to follow a unique course in every patient. Not to mention that there are institutional preferences and insurance constraints. Hence, the IMF encourages and sometimes pleads with patients to develop a relationship with a myeloma specialist and possibly even a second myeloma specialist. If a hematologist/ oncologist does not care for at least 30 multiple myeloma patients at any one time, it is unlikely that they would be considered a myeloma specialist. Determine whether that doctor you are seeing or wish to see has published, been a principal investigator on a trial or works at an institution known to have a recognized myeloma group. Call the IMF InfoLine at 1-800-452-CURE (2873) in the US or Canada or at 1-818-487-7455 worldwide, to get further information. Ask how many multiple myeloma patients that your hematologist/oncologist is caring for.

After several days of ASH, as much as I like to be very involved in my own treatment trajectory, I am so happy that I have my multiple myeloma doc to work through the many research papers and come up with a recommendation for me. Not so easy.

Leave a Reply


John Auerbacher

Diagnosed with myeloma in 2004, John Auerbacher became involved with the IMF by attending a Patient & Family seminar. Now, seven Patient & Family seminars later, he is the co-facilitator of the Westchester (NY) Myeloma Support Group.

Follow John on Twitter