I listened to a teleconference today, Myeloma: Progress in Treatment and Side Effect Management. The program featured my new oncologist, Dr. Melissa Alsina, and oncology nurse Kathy Daily.
Sponsored by the Leukemia & Lymphoma Society (LLS), the program was a good, basic primer for a newly diagnosed patient. Nothing new or exciting here. But several of the participant questions were enlightening.
Karen from Colorado was concerned about her high iron levels. Dr. Alsina cautioned Karen to monitor her liver function often.
Another Karen asked about Revlimid as a maintenance therapy after her transplant next month. Dr. Alsina quoted an early study showing early data supporting the use of low dose Revlimid starting three months post transplant.
Bill from Minneapolis was concerned about weight gain caused by steroid use. Kathy Daily’s response: Combine diet and exercise. Dr. Alsina’s suggestion: Try a lower dose if possible. Neither sounded overly optimistic. Sorry Bill!
A caller asked Dr. Alsina how myeloma relapse is determined. Her answer: Any rise in M-spike found in three or more blood tests is considered relapse—meaning the myeloma has become more active.
Another caller was concerned about carfilzomib’s 26% response rate in refractory myeloma patients, as discussed during the first part of the program. (Dr. Alsina had mentioned carfilzomib and pomalidomide as hopeful new novel therapy agents) Dr. Alsina reassured him, noting carfilzomib’s effectiveness rises dramatically when it is combined with other novel agents—and that the 26% response rate was actually good, considering most patients in the study have exhausted most, if not all of the other alternatives.
Sandy asked: “At what M-spike level do you start treatment?” Dr. Alsina responded that there is no absolute starting point. It depends on how active the disease, and if there is any bone or kidney involvement. At certain levels, for example 4 gm of protein in the urine for light chain type disease, or an M-spike of 5 or more, treatment would normally be immediate.
Frank in Florida asked the common question about how SCT compares to the new novel therapies. Dr. Alsina’s response: No studies have been completed comparing SCT to novel agent use alone—but they have been started. As I would have guessed (Dr. Alsina is my oncologist—and heads up the transplant department at Moffitt Cancer Center) Dr. Alsina did gently push SCT—even if you achieve CR. She did admit it might not hurt to wait, as long as your myeloma was under control and stable.
A patient with advanced kidney disease asked about her chances for a kidney transplant. Dr. Alsina replied that yes, if her myeloma is under control, she should be eligible for transplant—and should pursue that option aggressively.
Susan from Pennsylvania asked how long her husband needs to remain on dex now that he is stable—he is currently on a pomalidomide study and apparently is very sensitive to dex. Dr. Alsina suggested lowering the dose or dropping dex altogether if he is indeed stable—and if it is negatively affecting his quality of life.
Mary in California is suffering from lots of pain, caused by shingles and PN—Motrin just isn’t helping anymore. Kathy suggested using Tylenol and/or low dose oxycodone.
The program started promptly at 1 PM and ended at 2:30. Glad I could share what I heard and learned today for those of you who couldn’t attend.
Feel good and keep smiling! Pat