I thought I’d share with you a bit of the story about multiple myeloma and me.

Mostly, I’ve resisted conveying this tale, but I realized lately that when I meet people with myeloma for the first time, we quickly start talking about how we learned we had the disease and how we’ve been treated.

If I’ve learned anything from these talks it is that we are all so different – with treatments that can be widely divergent, and with greatly varied attitudes about how to deal with myeloma.

None of us knew what to expect at the beginning.

We spend a fair amount of time at first scouring the Internet for information.  I think that so many of those checking into websites about myeloma are newbies desperate to learn about this disease.  Once they have basic knowledge, an oncologist, and a treatment plan, many drift away from myeloma websites.

This column is directed primarily at those who are newly diagnosed.  I’ve learned a fair amount from what others have told me – anecdotes that have conveyed things to me that I wouldn’t have gotten from my doctors, websites that address the disease from a technical perspective, or research studies and results.

I was diagnosed in 2006, and I was pretty far gone by the time anyone figured out what I had.

I was Stage 3, but worse than that, when I went to Memorial Sloan-Kettering Cancer Center in Manhattan, I was near organ failure because of sky-high potassium in my bloodstream.  My kidneys were failing badly.  This visit to Sloan for a second opinion turned into a two-week hospitalization.

What happens when you have too much potassium in your blood?  It affects your heart function.  Left untreated, it stops your heart.  In a recent book, The Checklist Manifesto, Atul Gawande talks about how an anesthesiologist accidentally gave a lethal overdose of potassium to a patient, causing the man’s heart to stop during a procedure.

Gawande, who is perhaps the leading thinker right now on critiquing health care, describes what measures the surgery team desperately took to revive the patient.  I recognized those measures.  They were pretty much what was done to me in Sloan’s Urgent Care Center as soon as I walked in the door, including repeated injections of high levels of glucose and insulin in order to reduce the potassium level.

It worked for me, as it did for the person in Gawande’s story.

Getting my kidneys better was another story.

After I was admitted, they immediately started me on a regimen of Velcade ^[1] (bortezomib), Doxil ^[2] (liposomal doxorubicin), and dexamethasone ^[3] (Decadron).  Velcade at that point was only approved for relapsed/refractory myeloma, but one of the good things about a drug having an FDA approval – or “label” – is that it allows cancer centers, for example, to prescribe the drug “off label” – for uses other than its FDA-approved use.  This enabled my doctor, Raymond Comenzo, to prescribe Velcade as a first-line therapy.  I had received no treatment up to that point.

“We need to bring out the big guns,” he told Linda, my wife.

I credit Dr. Comenzo with a lot – saving my life and my kidneys.  My kidneys today, while they are not perfect, are pretty darn close to functioning normally.  It was touch and go for a while.  Dr. Comenzo said at one point, “You were this close to dialysis,” holding up his thumb and forefinger with the tiniest of spaces between them.

My nephrologist during this hospital stay was a sourpuss.  Each day that he came in to see me, he was rather cheerless.  Until my kidney function started to improve as treatment progressed, then he lightened up considerably.

Then it was on to six cycles of the Velcade/Doxil/dexamethasone regimen, with various side effects that really didn’t slow me down that much.  They did include a broken rib or two that resulted from an unrelenting and unstoppable cough, another side effect that went on for more than a month.

But the fun was just beginning.

In late September, it was time to mobilize my stem cells for harvesting, so I checked into Memorial (Sloan’s hospital component) on a Friday evening for an infusion and an overnight stay.  Of course, they needed to do a chest X-ray, and that was an oops.  A big oops.  I had spots on my lungs.  Everything came to a screeching halt.  They needed to figure out what it was.

A bronchoscopy on Monday was inconclusive.

So I needed an open lung biopsy.  I’ll let your imagination wander about that procedure.  The diagnosis: Aspergillus (a fungus) and something they call BOOP (bronchiolitis obliterans organizing pneumonia).  The doctors at Sloan put me on a more powerful antifungal medication than the one I’d been taking as a prophylactic, which obviously wasn’t up to the task, and hoped for the best with the Aspergillus.  It’s a pretty common fungus, but it can cause a nasty infection if you’re immunocompromised, as people with myeloma are.  They also gave me an antibiotic for the BOOP.

We all waited.  I got better.

This delayed my first transplant by about four months, during which I was also unable to have any further treatments.  Not the best of situations, but I held my own during that time.

I had autologous stem cell transplants in February and May of 2007.  Autologous transplants use stem cells harvested from your own blood.  The other type is called allogeneic, where the stem cells come from a donor.  I’ve since had two doctors encourage me to pursue an allogeneic transplant because it is the closest thing there is to a cure for myeloma.  It’s a bit problematic for me because I don’t have a good sibling match.  That notwithstanding, allogeneic transplants seem to me to be quite scary – the risks are considerable, including a mortality rate than can exceed 30 percent.

Stem cell transplants, primarily autologous, are still the gold standard for myeloma treatment, but novel therapies are beginning to change that.  Transplants are being delayed more, to be used not as front-line therapy but as so-called salvage therapy for those who relapse and are refractory (resistant) to the treatment they’ve been getting.

At this point, there isn’t much that’s evidence-based on the use of novel drugs versus transplant.  This month at the annual American Society of Clinical Oncology conference, however, mid-trial results ^[4] of an ongoing study indicated that stem cell transplantation remains superior to the novel drugs and the newer combination drug therapies, especially when it comes to progression-free survival, where the differences were significant.

For older patients, a transplant is generally not an option because it’s felt the rigors of the process can be too much for them.  When I had my transplants, the general cutoff for transplants started around 65 (I was 61), but doctors have been pushing that upward toward 70 for certain individuals.  More and more, they are taking into account a person’s physical condition as much as their age.  I’ve met people in their late 80s and 90s whom I thought are in better shape than I am now.

For me, because I presented in such a far-gone state, doing the transplants when we did was pretty much a no-brainer.  Every myeloma specialist we spoke with said I should do the transplants then and there.

The good news is that after my transplants in 2007, I achieved a complete remission and stayed in remission for three years.  The immediate post-transplant period, especially in the summer and fall after the second transplant, was filled with infections and pneumonias, including some so serious they landed me in the hospital for several days.

To this day, because of my compromised immune system, the risk of infection is always lurking in the background, and I’m particularly vulnerable to respiratory infections.  I’m sure my doctors don’t like the fact that I’m a regular train rider, and they really don’t want me on the New York City subway system, particularly when the cars are crowded and especially during flu season.

That gives you an idea of the early days of my life with myeloma.

If you’re facing a new diagnosis, I think my message is that you need to prepare yourself for a variety of possibilities, complications, and eventualities, some of which you’re not going to have heard about before they happen.

For me, I’ve tried to deal as best I can with whatever’s thrown at me and to just get on with my life.  I said in a previous column that you have a choice – you can either control your life with myeloma, or your myeloma will control your life.

For me, there’s really been no choice.