IMF Patient & Family Seminar

Friday, August 28, and Saturday, August 29:

The International Myeloma Foundation (IMF) Patient & Family Seminar was interesting and information-packed, to say the least. We heard doctors from all around the country discuss topics like Ask the Expert, Managing Side Effects, Frontline Therapy, Role of Transplant, Bone Disease, and Approaches to Relapse. I think that about 100 of us myelomiacs attended, many with their caregivers. I've been dealing with myeloma for six years now, so a lot of the information was not new, but here are a few things that I learned, or perhaps re-learned:

Transplants:

• It appears to make little difference in overall time of survival whether the transplant is done early or late, as long as stem cells are collected early before the bone marrow gets all beat up. A current Dana-Farber trial may clarify this further.
• More transplants are done for myeloma than for any other disease.
• The mortality rate for a single autologous transplant is less than 1%.
• Revlimid can decrease the yield of a later stem-cell collection.
• Medicare wil pay for one transplant up to age 76.

New Treatments & Tests:

• Three- and four-drug combinations can produce very good initial responses, but it's not yet clear what happens if and when the combo fails. Will the individual drugs have any impact then?
• Carfilzomib, the new proteazome inhibitor, is much less apt to cause neuropathy than is Velcade. Currently available only in trials.
• Denosumab is a new monoclonal antibody with the potential to help treat osteoporosis and repair bone damage. It may replace Aredia and Zometa in some cases. Currently available only in trials.
• Pomalidomide, the new thalidomide analogue, is succeeding in its Phase II trial and is now scheduled for a Phase III trial in 2010. Only available in trials.
• A new "power needle" for bone marrow biopsies has been approved by the FDA. When manufacturing problems are overcome and it becomes available, it will make biopsies quicker and less bothersome.

Bone:

• Myeloma causes bone damage in about 80% of patients, but not in the other 20%. This is unrelated to the aggressiveness of the myeloma. As it happened, a survey of attendees showed that 80% of us had bone disease.
• Aredia and Zometa can eventually saturate the bones with bisphosphonate, and the half-life is 10 years, so therapy should be cut way back.
• There is a risk of necrosis of the hip joint, and perhaps other joints, with prolonged dexamethasone use, especially with concurrent bisphosphonates. This is a serious problem if it occurs. The risk of occurrence is low, but I'm thinking I've maybe had about enough DEX.

Other Stuff:

• Mayo Clinic in Arizona still uses high-dose dexamethasone with Revlimid or Velcade for the first two cycles, to get a rapid response. Often a rapid response is important for patients who have recurring disease.
• Neuropathy from Velcade may be painful, whereas neuropathy from thalidomide or Revlimid is more likely to present as numbness.
• Velcade neuropathy is likely to improve if treatment stops, though, whereas neuropathy from thalidomide usually does not.
• Ibuprofen can defeat some of the anti-clotting benefit of aspirin. Oops.
• "Hemonc" is short for hematologist/oncologist. Maybe I'll try that at Mayo, see if it flies.
• Diet is important. Dr Durie's advice: (1) Don't eat anything that your grandmother wouldn't recognize, and (2) Shop around the edges of the supermarket.
• There seemed to be a growing consensus that myeloma can be caused by benzene and various pasticides, even herbicides.
• Two attendees reported that they were diagnosed with myeloma shortly after a significant weight loss. Dr Durie pointed out that toxins are stored in body fat, and may flood the body when fat is lost.

Anything that I should add?


Sunday's breakfast. There is oatmeal under there somewhere.