In the column ^[1] I wrote two months ago, I relayed how I was doing 100 days after my allogeneic (donor) stem cell transplant.

I struck a pretty optimistic note.  I felt that the transplant itself had gone really well and that the big question that was still out there was whether it would work to control my multiple myeloma for a meaningful amount of time.

Unfortunately, I may have gotten my answer sooner than I expected.

I was really hoping 2013 was going to be a better year healthwise than 2012. I started out the new year looking forward to a period of time where I didn’t have to be a full-time myeloma patient.

It was not to be.

It started with a toothache, of all things.  The dentist and endodontist were sure all I needed was a root canal.  I guess if all you have is a hammer, all the world looks like a nail.

After the root canal, the pain was unchanged and started to get worse.  My cheek and face were hurting and even seemed to be swelling.  I was an Ear, Nose, and Throat doctor for God’s sake; I should know how to approach this.

My Moffitt doctors ordered a CT scan of my sinuses.  The test showed a maxillary sinus that was completely filled, but with what?  Infection, especially a fungal infection, due to my suppressed immune system seemed to be the most likely scenario.

I also developed two small nodules under the skin of my upper arm.  A needle biopsy was initially suspicious for fungus but then negative.

Within a day, I was on my way to sinus surgery to drain and biopsy the maxillary sinus.  All of this was way too close to home.  I had performed hundreds of these surgeries myself.

Afterwards, the surgeon said everything looked pretty good.  The preliminary results showed no bacteria, no fungus, and no tumor.

All of that seemed like good news, but my symptoms were getting worse.  My cheek was getting more swollen and painful, and the skin over my cheek was getting numb.

As a patient, I was hoping since the results were negative that it would just take some time to heal.  As a doctor, I knew something was not right.

It took almost two weeks for my answer to come.

During my regular visit to Moffit for my Kyprolis ^[2] (carfilzomib) infusion, the nurse said, “The doctor doesn’t want you to leave today until you talk to him.”

Hum, this is not good. Here it comes.

Within five minutes, my doctor was in the room looking grim.

The final biopsies from the sinus showed multiple myeloma.

I had what is called extramedullary disease ^[3]: multiple myeloma that is outside of the blood and bone marrow, anywhere in the soft tissues or even organs of the body.

I have come to learn that this is not unusual.  When a donor transplant fails, it is apparently commonly due to extramedullary disease, which is in areas that are harder to reach by the immune system.

The short-term plan was to start radiation therapy to the sinus and cheek and to stop all of my immunosuppressive therapy. We wanted to fire up some graft-versus-host disease ^[4] (GVHD) to gain some of the positive benefits of the graft-versus-tumor effect that would hopefully accompany it.

The good news is that multiple myeloma cells are very sensitive to radiation therapy.  The radiation has gone well.  My pain and swelling are gone.  Compared to everything else I have done so far, radiation treatments are a walk in the park.

So, chances are pretty good that we can get rid of the myeloma in the sinus with the radiation.

The nodules on my arm seem to be getting smaller and are very tiny now. They are presumably myeloma as well, but we are unsure and are watching them closely.

The question now is: what do we do next, and how does this bode long-term?

Almost all of the drugs used in multiple myeloma will have some impact on the immune system after a donor stem cell transplant.  It is a delicate balancing act to try to have just enough GVHD to gain the benefits of the graft-versus-tumor effect without being miserable from the side effects of GVHD.

Velcade ^[5] (bortezomib) and Kyprolis will suppress the immune system and therefore tamp down GVHD and likewise probably graft-versus-tumor effects.

Revlimid ^[6] (lenalidomide) is known to ramp up the immune system and to exacerbate GVHD, which may have a beneficial effect on graft-versus-tumor effects.

As far as I can tell, Pomalyst ^[7] (pomalidomide ^[8]) has not been tested yet in the post-donor stem cell transplant setting.

So what should we do?

One option is to do nothing.  Everyone has told me that the best potential long-term ally is my new immune system from the transplant.  Doing nothing would allow the new immune system to do its thing, hopefully generating some graft-versus-tumor effect.

All of the myeloma drugs remain options on the table, but probably not without risk.

We may also consider a donor lymphocyte infusion, an infusion of white blood cells from my donor, if GVHD stays quiet for 60 days once I am off my immunosuppressive therapies. The problem is that donor lymphocyte infusions are probably not as effective against extramedullary disease, so no one has seemed to jump on this option.

As for the new long-term prognosis, definitely not as good as it was looking a couple of months ago, but we’ll see.

For the time being, I’m back into full-time fight mode a lot sooner than I thought I would be.