I finished my stem cell transplant in August of 2006.  As I mentioned in my last article ^[1], once engrafting of the stem cells takes place, most of the nasty symptoms from the transplant resolve fairly quickly. The lingering symptom was fatigue.

On the bright side, I was home, the worst of the treatment was over, and I was going to make the best of it.

Everyone said, “Don’t fight the fatigue, listen to your body.”  This is true.  If you need to nap, nap. Your body has been through hell and needs to recover.

However, I am also a big believer in getting moving again.  The longer you stay sedentary, the harder it is and the longer it takes to regain strength and stamina.  Physical activity also helps to overcome the fatigue.

It doesn’t have to be much to begin with.  Start walking, even just out to the curb to pick up the paper, and then gradually build up to more.  Try to increase it a little each day or every few days. It’s amazing what a difference this will make.

How long the fatigue lasts seems to vary widely from individual to individual.

For me, by about a month after my transplant, I was actually feeling pretty well.  I was able to step up my exercise routine to riding a bike and swimming.   I started going out to meet friends for lunch and to return to normal life.  At that time I was determined to return to work as soon as I possibly could.  At 7 weeks post-transplant, I returned to work on a reduced schedule.

What about the results of the treatment?  After four cycles of chemo and the stem cell transplant, I was ready to be done with multiple myeloma forever.  Of course from everything I had read and learned about myeloma, this was not realistic.  But I had heard plenty of stories of people with very long disease-free intervals.  I hoped this would at least be me.

During my induction chemotherapy, my monoclonal protein numbers, or M-spike, dropped from 7.5 down to 0.5.  Both my doctor and I were very optimistic and happy with this response.  At my first blood tests after the transplant, my M-spike was still 0.5.  I was disappointed to say the least.

My doctor said, “This will drop further, and you have a VGPR – very good partial response.  From a prognostic standpoint, a VGPR is just as good as a complete response.”

I have heard that over and over again, but it’s still hard to buy.   We all want a complete response.  At least for a period you can feel like the disease is gone, even though with myeloma it is incorrect to use the term “remission.”

I pushed my doctor further.   I wanted to know: What does this mean?  What’s next?  What’s going to happen to me?

Very clinically and matter-of-factly she said, “Average time to relapse is 18 months to two years.  It’s a very heterogeneous disease; everyone is different.”

“That’s it, we just sit back and wait,” I thought.

I have heard it said that the two worst days of a cancer patient’s life are the day of diagnosis and the day treatment stops.

We briefly discussed the option of Revlimid ^[2] (lenalidomide), but at that time the data on Revlimid maintenance post-transplant was not out yet.   Had those studies been available, as they are now, I almost certainly would have opted for Revlimid.  The current data on Revlimid maintenance shows that it delays time-to-progression, but does not necessarily improve survival.

At least you have the feeling of doing something active to fight the disease.  Every morning when you get up and take that pill, you’re doing something, being proactive against the disease.

One of the hardest things about multiple myeloma is having a disease we know is coming back but no way to know when and how it will manifest.  It is always the elephant in the room.

So for me at that point, there was nothing to do but go back to life and work as normally as possible while holding my breath every month for the results of my blood work.

My original plan was to go back to work as soon as possible on a somewhat reduced schedule and then build back up to my previous level of being insanely busy.  The realities of having multiple myeloma were beginning to sink in, and I approached work and home in a new light.  I resolved to work less, try to enjoy it more, and spend more time with family.  And wait.