A couple of months ago, I wrote a column ^[1] about how my multiple myeloma treatments over the last couple of years have made any kind of planning ahead almost impossible. For better or for worse, my treatments have forced me to truly live life one day at a time.

There is a corollary to the “one day at a time” mantra. Lately, I have been “waiting for the next shoe to drop.”

I am now 10 months out from my unrelated donor (allogeneic) stem cell trans­plant, and it has been a roller coaster ride. It seems that as I get one problem solved, a new one pops up.

I have gone from the short-term complications from the transplant ^[2], to graft-versus-host disease ^[3] symptoms, to extramedullary ^[4] recurrence (outside of the blood and bone marrow) of the multiple myeloma in my sinus requiring radiation therapy, to a positive PET scan ^[5] requiring further treatment.

This experience has conditioned me to always be waiting for the next shoe to drop. When good news comes, I appreciate it and try to enjoy it. However, I try not to get too excited because I have come to feel as though something else is coming.

I am always on guard for escalation of my disease, signs of graft-versus-host disease, infection, side effects from the drugs, or who knows what else I can’t even anticipate.

As a multiple myeloma patient, I know that I am not alone in this feeling. It is a cloud under which we walk.

Having said all that, I don’t mean to sound down.  I’m actually at what I feel is a pretty good spot right now.  While I didn’t get the home run result that I would have liked from the transplant, there is no doubt in my mind that the new immune system has had positive effects.

It seems that myeloma drugs that were previously no longer effective for me are now working again. I feel as though I have at least turned the clock back on my disease.

I have returned to exercising and other normal activities. My quality of life is certainly better than it was the six months or so prior to the donor transplant.

I believe that I am alive today and have a fighting chance because of the decision a year ago to proceed with the donor transplant.

Currently, I have had a very good response from 3 cycles of the “CYCLONE” regimen: Kyprolis ^[6] (carfilzomib), cyclo­phos­phamide ^[7] (Cytoxan), thalidomide ^[8] (Thalomid), and dexamethasone ^[9] (Decadron). The lesions that had shown up on my PET scan have essentially cleared.

I have a small amount of graft-versus-host disease, which manifested as skin and oral changes but which are stable and controlled at present.

All my doctors seem to agree that the best next step for management of my multiple myeloma is a donor lymphocyte infusion (DLI), which is scheduled for this week.

A DLI is basically a way of doubling down on the transplant. More cells are harvested from the original donor and given as a transfusion without any chemotherapy. The idea is to try to ramp up the new immune system even further to stimulate more graft-versus-tumor effect.

The down-side, of course, is that there is a risk of exacerbating more graft-versus-host disease symptoms as well.

It seems like a pretty simple outpatient procedure. Results in the literature are encouraging; however, as with the reported results about transplantation itself, results for DLIs are all over the place and make it difficult to draw any definite conclusions.

So for the time being, I am looking forward to moving forward with the DLI. I know that I will require some type of maintenance regimen afterwards, but the specifics have not been decided yet.

I have resorted to what I think of as my default position in these situations of cautious optimism. I know that my disease will likely become active again at some point, but hopefully I will have drug options again for a while.

Still, I can’t shake the feeling that I am always on the look out for the next shoe to drop.