It is fantastic that your husband has been in remission for seven years. While it is not common for patients with myeloma to have such long remissions, they are seen from time to time. Unfortunately, no one can predict how long your husband’s remission will last. Since myeloma is not known to be curable, it should be followed regularly for the rest of your husband’s life, so that any disease relapse can be detected promptly. If and when relapse does occur, there are many effective treatment options, including a second autologous stem cell transplant. So you have good reason to be optimistic about your husband’s future. Q2. I was diagnosed two years ago with advanced multiple myeloma at the same time as being diagnosed with breast cancer. I had four cycles of Adriamycin (doxorubicin) plus Cytoxan (cyclophosphamide), thalidomide/dexamethasone for induction therapy and autologous stem cell transplant. I was on thalidomide for maintenance for about eight months until I developed peripheral neuropathy, then on Revlimid (lenalidomide) for about four cycles, but the neuropathy continued and worsened, even on low doses of Revlimid. So presently, I am in remission (almost negligible protein levels), but am on no maintenance treatment, and my oncologist absolutely wants to avoid worsening the neuropathy at this time. This makes me a bit nervous. I felt sort of “protected” on Revlimid, and now I’m thinking that my multiple myeloma will return sooner, shorten my time-to-progression and my overall survival time. Does that happen to people who can’t tolerate thalidomide and Revlimid? Is being on no treatment a good option? Are there any other effective maintenance treatments? Does it make sense to stay off drugs while in remission so I don’t build up resistance to drugs I might need later? There are some patients who maintain low-level, stable disease for long periods of time without maintenance therapy, so it is reasonable for your doctor to follow your disease without maintenance therapy as long as your myeloma protein labs are monitored closely (at least every two months). With such close follow-up, therapy can be restarted promptly, if and when your myeloma protein values begin to rise. However, if you do want to pursue a maintenance regimen, steroids (prednisone or dexamethasone, for example) are an option to consider. In a recent study of 250 patients, those who received maintenance therapy with 50 mg of the steroid prednisone every other day (after completion of their initial chemotherapy) had a longer survival without disease progression, and longer overall survival, than those who received 10 mg of prednisone every other day. Alpha-interferon is another drug that has been explored as maintenance therapy. Some patients have very long-lasting remissions with this medicine, but it is difficult to prove its effectiveness as maintenance therapy in clinical trials because only an estimated 10 percent to 15 percent of treated patients have these sustained responses, and many patients have difficulty tolerating the medicine because of the flu-like symptoms it can cause. Q3. I was first treated with thalidomide and then Velcade (bortezomib) for myeloma. They were reduced and stopped at the first signs of neuropathy. However, the neuropathy got so bad it left me completely paralyzed in both legs. After six months in a wheelchair, I was finally able to walk again (unassisted) after being treated with regular infusions of intravenous immunoglobulin (IVIG) and physical therapy. I am continuing the IVIG as well as B vitamins. I briefly started Revlimid (lenalidomide), but the neuropathy began to reappear so I stopped. I have since been on Cytoxan (cyclophosphamide) which has brought me to near remission without any side effects. At this point my doctors are deciding what approach to take for maintenance. Any suggestions? I’m sorry for the difficulties you’ve had with your myeloma treatment. If your disease is responding to cyclophosphamide, and you are tolerating this medication well, it would be reasonable for you to continue taking oral cyclophosphamide, perhaps with four days of dexamethasone a month, as a maintenance regimen. Learn more in the Everyday Health Multiple Myeloma Center.
