One of the big things that you hear about with any transplant, but especially with the allogeneic (donor transplant), is that it is critical to get past the first 100 days.

Whenever friends would ask after my transplant when I could relax a little about going out, eating, and life in general, the answer was always, “After the first 100 days.”

I recently passed the famous 100-day mark.

I have to tell you, I didn’t hear any trumpets go off or notice any marching bands.  It turns out, in fact, that for the donor transplant, the 100 day axiom is a bit of hype.

For the last couple of months, I have been on the immunosuppressive drugs Rapamune (sirolimus or rapamycin) and CellCept (mycophenolate mofetil) as well as prednisone ^[1] to prevent rejection and graft-versus-host disease (GVHD), a common donor transplant-related complication in which the donor cells recognize the patient’s cells as “foreign” and attack them.

I started Kyprolis ^[2] (carfilzomib) about a month earlier both for the anti-myeloma as well as the anti-GVHD effect.

Life actually was looking pretty good.  I was feeling well and had returned to a lot of normal activities, such as going out with friends, walking, and riding my bike.

I was tapering my prednisone dose and was almost off completely.  I was cautioned mainly to avoid crowds, to be very careful not to be around people who are sick, and to continue to be careful with what I eat.  Going out to dinner was fine as long as it was not crowded and was clean.  Movies in the middle of the day were OK.

On day 100, I had a full set of labs, including all my transplant and myeloma labs, and I and went to see Dr. Anasetti, my transplant doctor at Moffitt.

This is it: day 100. I’m good, right?  I knew, of course, that I was still a long way from being in the clear, but I was looking forward to at least being cut loose a little.

Well, not really.  Dr. Anasetti said that the 100-day mark really has more historical significance.

If I had been a donor patient at another transplant center or a Moffitt patient who lived a long way from the hospital, day 100 would be the day, traditionally, that I would be allowed to return home.  But it turns out that not very much else changes.

As Dr. Anasetti explained the curve for complications, something bad happening after the transplant, especially a serious infection, doesn’t really start to drop off for about 6 months.  And a minor cold can easily turn into a serious case of pneumonia.

So it’s pretty much business as usual for me.

I continue to go out but remain very cautious about being around crowds.

I had hoped to be able to get on an airplane and go on some college-hunting trips with my daughter.  I’m going to have to wait a few more months on that.

I still won’t eat salad at a restaurant.

Having said all that, I as well as my family and doctors are really pleased at where I am at.  To be honest, no one seemed to give me much of a chance to even get to this point.

That brings me to the next question:  What about my multiple myeloma?

When I was trying to make the decision about the donor transplant, I would always tell people there are really two sets of questions.

One is: Will I survive the transplant process and not be one of the 10 percent to 20 percent who die of complications? And can I survive without being miserable from GVHD?

The second one is: Will the donor transplant help my multiple myeloma?  Will I gain any meaningful disease control?  For how long: six months, a year, five years, permanently?

While I cannot say for certain, and lots can still go wrong (including chronic GVHD), I am feeling pretty good about the first question.  There is no question that I am happy about my decision, and I feel like I can weather whatever the transplant process throws at me.

A lot of people have been asking about the second question.  What about my multiple myeloma?  Well the jury is still out.

Right now at 100 days and after 2 cycles of Kyprolis, my M-spike remains 0.1.  Pretty much where I was at after chemo and just before the transplant.  Not bad, and believe me, I’ll take it if it stays there.

But as is all too often the case with multiple myeloma, who knows?  Will it go down to zero?  Will it stay down for a few months and than start to become active and creep up?  Will it stay there for years?

I’m just trying to take it one day at a time and to take some comfort in knowing I have and will continue to do everything I can do.