On Thursday October 10 we made our way to Baltimore to visit the director of the stem cell transplant program at Johns Hopkins. He is not in favor of performing a second transplant on me. In fact, he says that in many cases he has begun to discourage the use of even first-time transplants, in favor of some of the novel chemotherapeutic agents that have appeared in recent years. He specifically mentioned pomalidomide and carfilzomib, both of which I have discussed in earlier posts. Compared with them, a second transplant, and for that matter increasingly even a first transplant, does not do so well in cost/benefit terms -- where "cost" is an expression not so much of money but of risks, side effects, and recovery time; and "benefit" is an expression of the quality of the response and the time to progression. To use his formulation, the novel agents are gradually transforming "a bad nasty disease that kills people" into "a bad nasty chronic condition". They are in no sense curative. But we'll have to take what we can get.
He will communicate his views to my Christiana oncologist, who I am scheduled to visit next week.
Obviously I am relieved by this verdict. None of the proposed regimens will involve anything like the ructions that would be caused by a transplant. I think Huong may be even happier than I am about it; after I started talking about the possibility of a second transplant, I thought I heard her get her suitcases out to start packing.
Meanwhile, daily life has not remained on hold. I continue to work, and I am eating and sleeping normally (although the dexamethasone has me a bit wired, and is causing night sweats). The dexamethasone is doing a good job of keeping down the pain. I can still drive motor vehicles. I confess to not having returned to my normal fitness regimen, as I'm a bit paranoid about the spinal deterioration. Since the myeloma is no longer under control, that cannot be doing anything other than getting worse. Huong is encouraging me to investigate aquatic therapies, which seems like a good low-impact idea.
Thursday, October 10, 2013
Tuesday, October 8, 2013
An Unplanned Hospital Stay
The insidious nature of myeloma has revealed itself once again, as if we needed to be reminded of it. A couple of weeks before my visit with the oncologist last month, I began to experience some new pain in the right hip and upper right leg. The pain was hardly debilitating, but it was noticeable, and I mentioned it to the oncologist. She ordered an MRI of the lumbar spine, which revealed some new lesions, indicating myeloma activity. "But we have to give the higher dosage of Revlimid a chance to work", she said. Meanwhile, the new pain remained, but it didn't seem to be spreading or getting worse.
Until late last week, that is. On Thursday October 3, I began feeling not so well during the day, with pain spreading up into the old problem areas of the thoracic spine and lower ribs. But what was really disturbing was that by that evening I was experiencing faint echoes of the spasms that sent me to the hospital for the first time, four years ago.
So we dropped all of our Friday plans in favor of an impromptu visit to the oncologist's office. She quickly settled on the need for a thoracic MRI -- exactly what I was hoping for. But my timing was terrible. The cancer clinic is not a 24x7 operation, and there was no possibility of getting the MRI there before the imaging department shut down for the weekend. Not wanting to just send me home until Monday in a potentially dangerous state, she sent me to the hospital instead.
Miraculously, the ER was practically deserted on a Friday afternoon, and I was more or less swiftly admitted into the hospital and installed in a bed in the Oncology ward. The oncologist stopped by on her way to begin a week-long vacation -- bad timing again -- to announce that "We're done with Revlimid" -- but that she had not yet decided on the treatment path forward.
The neurosurgeon who had done the original balloon kyphoplasty on T8, and who has been monitoring me sporadically ever since, also stopped by to say that he would not be working that weekend, but that he would need to look at the results of the yet-to-be-done MRI, and in any case any necessary surgery would have to wait until the following week. As it happened, I was summoned to appear before the MRI machine not long after his departure.
And then I sat in my hospital room for two days, while nothing else happened, either good or bad. Of course Huong spent a lot of time with me, and she and the iPad together succeeded in keeping me from going mad with boredom.
On Monday October 7, the neurosurgeon called to announce that, while the thoracic MRI showed new lesions and additional compression, there were no new spinal fractures. He indicated that he was unwilling to undertake any surgical procedures whatsoever in my case at present, as any such procedures would be very invasive, involve much recovery time, and could not be counted on to be actually beneficial. His preferred strategy would be to manage my pain while minimizing further damage, i.e. by forcing back the cancer again.
The ball was now firmly in the court of my oncologist's backup -- a man I have never met and have spoken to exactly once, on the phone. He began by telling me what I already knew, that there are now many chemotherapeutic agents available for use against myeloma, and choosing amongst them would be an educated guessing game. And then he hit me with something completely unexpected: "But if I was conducting your case, I would consider a second transplant, because you are still young and strong enough to handle it, and you responded very well to the first one, which would lead me to believe that a second one would be your best chance for another extended remission."
I was frankly speechless, but eventually managed to reply that the Johns Hopkins transplant artists had already expressed their opposition to so-called tandem transplants. To which the backup oncologist replied, "There is little evidence that tandem transplants are sufficiently beneficial, but that is not what we are talking about here. A tandem transplant involves a brief recovery time between the transplants; they are done back to back. Your first transplant was four years ago. This would just be a second transplant." As it happens, I have already set up a near-future appointment with the director of the Hopkins transplant program to discuss the recent developments in my case, and when I told the oncologist this he said, "Excellent. Ask him if he can do another transplant."
So that is my current plan. I am going to ask the Hopkins oncologist if he wants to subject me to the unspeakable horrors of the peripheral blood stem cell transplant a second time.
Meanwhile, I was discharged from the hospital on Monday evening. The pain is being kept at bay with 4 mg doses of my old steroid friend dexamethasone, taken twice daily, which suppresses any swelling of the spinal cord; and I have oxycodone for breakthrough pain relief.
Until late last week, that is. On Thursday October 3, I began feeling not so well during the day, with pain spreading up into the old problem areas of the thoracic spine and lower ribs. But what was really disturbing was that by that evening I was experiencing faint echoes of the spasms that sent me to the hospital for the first time, four years ago.
So we dropped all of our Friday plans in favor of an impromptu visit to the oncologist's office. She quickly settled on the need for a thoracic MRI -- exactly what I was hoping for. But my timing was terrible. The cancer clinic is not a 24x7 operation, and there was no possibility of getting the MRI there before the imaging department shut down for the weekend. Not wanting to just send me home until Monday in a potentially dangerous state, she sent me to the hospital instead.
Miraculously, the ER was practically deserted on a Friday afternoon, and I was more or less swiftly admitted into the hospital and installed in a bed in the Oncology ward. The oncologist stopped by on her way to begin a week-long vacation -- bad timing again -- to announce that "We're done with Revlimid" -- but that she had not yet decided on the treatment path forward.
The neurosurgeon who had done the original balloon kyphoplasty on T8, and who has been monitoring me sporadically ever since, also stopped by to say that he would not be working that weekend, but that he would need to look at the results of the yet-to-be-done MRI, and in any case any necessary surgery would have to wait until the following week. As it happened, I was summoned to appear before the MRI machine not long after his departure.
And then I sat in my hospital room for two days, while nothing else happened, either good or bad. Of course Huong spent a lot of time with me, and she and the iPad together succeeded in keeping me from going mad with boredom.
On Monday October 7, the neurosurgeon called to announce that, while the thoracic MRI showed new lesions and additional compression, there were no new spinal fractures. He indicated that he was unwilling to undertake any surgical procedures whatsoever in my case at present, as any such procedures would be very invasive, involve much recovery time, and could not be counted on to be actually beneficial. His preferred strategy would be to manage my pain while minimizing further damage, i.e. by forcing back the cancer again.
The ball was now firmly in the court of my oncologist's backup -- a man I have never met and have spoken to exactly once, on the phone. He began by telling me what I already knew, that there are now many chemotherapeutic agents available for use against myeloma, and choosing amongst them would be an educated guessing game. And then he hit me with something completely unexpected: "But if I was conducting your case, I would consider a second transplant, because you are still young and strong enough to handle it, and you responded very well to the first one, which would lead me to believe that a second one would be your best chance for another extended remission."
I was frankly speechless, but eventually managed to reply that the Johns Hopkins transplant artists had already expressed their opposition to so-called tandem transplants. To which the backup oncologist replied, "There is little evidence that tandem transplants are sufficiently beneficial, but that is not what we are talking about here. A tandem transplant involves a brief recovery time between the transplants; they are done back to back. Your first transplant was four years ago. This would just be a second transplant." As it happens, I have already set up a near-future appointment with the director of the Hopkins transplant program to discuss the recent developments in my case, and when I told the oncologist this he said, "Excellent. Ask him if he can do another transplant."
So that is my current plan. I am going to ask the Hopkins oncologist if he wants to subject me to the unspeakable horrors of the peripheral blood stem cell transplant a second time.
Meanwhile, I was discharged from the hospital on Monday evening. The pain is being kept at bay with 4 mg doses of my old steroid friend dexamethasone, taken twice daily, which suppresses any swelling of the spinal cord; and I have oxycodone for breakthrough pain relief.
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