Myeloma Support Group, Rochester Minnesota

Minnesota has three monthly myeloma support group meetings, one on each side of the Twin Cities and one in Rochester. We three attend regularly in the Twin Cities, but had never been to a Rochester meeting. However, we heard that the guest speaker would be a renowned and respected Mayo Clinic myeloma doctor fresh from the International Myeloma Workshop in Paris, so we went. I’m protecting the doctor’s identity because I may not have understood perfectly and wouldn’t want the doctor to be thought responsible for errors that are actually mine.

High spots of the Workshop:

Aggressive versus conservative initial treatment:

Some doctors believe that myeloma should be treated aggressively in the beginning, with a three-drug regimen, for example, while others prefer a more conservative approach, perhaps using just one drug in the beginning and reserving the others. This doctor believes that the issue is not settled yet, despite some studies, and I got the impression that Mayo doctors in Rochester would likely treat a new patient conservatively unless the patient’s myeloma was “high-risk,” about one fourth of cases.

Maintenance with Revlimid:

After an autologous stem cell transplant, a patient has the choice of maintenance, probably with Revlimid, or no treatment at all. In either case the myeloma almost always returns, but recent studies have shown that maintenance delays that return. After the return the myeloma is treated again, of course, and until now there was no clear survival advantage to maintenance, but one ongoing study has now shown some advantage.

What’s new?:
Proteasome Inhibitors:

Velcade is a proteasome inhibitor. Recently it has been shown less likely to cause neuropathy if given subcutaneously (under the skin) than when given the usual way as an IV infusion. Carfilzomib, a new drug, is less likely to cause neuropathy than IV Velcade and may be close to FDA approval. Other proteazome inhibitors are in trials.

Monoclonal Antibodies:

Our bodies manufacture antibodies to attack invading bacteria and viruses, one type of antibody for each different invader. Researchers are developing synthetic antibodies which attack myeloma cells. In conjunction with chemotherapy, synthetic antibodies have become an important therapy in treating leukemia, and now they are showing promise in treating myeloma.

Immunomodulatory Drugs:

Like Revlimid, pomalidomide appears to be a very successful treatment. Right now, the only trial available at Mayo is for people for whom Revlimid no longer works, but I got the impression that Celgene, the drug’s developer, may go for FDA approval soon. It’s good stuff – I wish I could help!

For much more information about the 2011 International Myeloma Workshop, visit this International Myeloma Foundation web page.

The Rochester meetings are held in a cozy room in the Gift of Life Transplant House. Some of the attendees are from out of state, staying in Rochester as they recover from a transplant or other medical issues, and some live near Rochester and commute in to the meetings. We enjoyed the meeting and the warm, welcoming atmosphere. There is always a knowledgable representative from Mayo Clinic. For meeting dates, go to and scroll down the right-hand panel.