Sue started on Revlimid (thalidomide/lenalidamide) Monday night. She is getting the highest daily dose they make, which is 25 mg. They dose her one time a day at night, because the stuff wears you out and makes you tired. The high dose Dexamethasone treatments (40 mg/day, administered at 10 mg every six hours) started over the weekend. This combination of drugs, known in the myeloma medical community as “Rev-Dex,” is now commonly prescribed for myeloma patients who’ve had at least one prior course of chemotherapy with a different drug than Revlimid. The FDA has only conditionally approved the use of Revlimid for patients who’ve had at least one other drug therapy.
Everything now hinges on whether the Rev-Dex combination will bring the myeloma under control again, and if so, for how long. They will be testing Sue’s blood to see if the cancer goes back into remission. Myeloma is one of the cancers for which there is not really a cure, so a typical history of treatment, or management of the disease, is drug therapy to bring the cancer into remission or partial remission, followed by an inevitable relapse, followed by more drug therapy, and so on. The patient’s prognosis for long-term survival usually depends on the amount of time they remain in remission. According to an aritcle in Wikipedia, median survival for myeloma patients is 50-55 months. I have seen other articles indicating a lower median survival time of approximately 3 years, but those articles may have been based on older studies. Some patients remain in remission for years. In Sue’s case, she has never remained in remission for more than a couple of months following any course of therapy, and her current symptoms are rather dramatic. I believe that is why the doctors are not optimistic.
The Dexamethasone has brought up her energy levels and puffed her face back up. The Revlimid will now knock her energy levels back down. The potential side effects of Revlimid are many. One negative side effect, birth defects, is a non-issue for Sue. The most common and potentially most dangerous is blood clotting. One of the questions Sue asked Dr. Wolf in our initial meeting with him was, what does death from Multiple Myeloma look like? My recollection of his answer was that it would be a slow wasting away and that eventually some of her internal organs would stop working. We remain hopeful but grounded. We are investigating hospice care options.
The one drug that has the best effect on Sue these days is endorphins, and she gets them from the many visits, phone calls, cards etc. that you have been giving her. She is not reading her emails lately, so that is not the best way to communicate with her. You all have been so kind and shown so much love that, notwithstanding her crummy circumstances, Sue’s cup is running over.