Sunday, April 05, 2009

Two Myeloma Patients

TNG and i closed out the ski season a week ago. It's some great time together, but it also ends up being at times a bit of a solitary activity, leaving lots of time to think. Sometimes it's when he's in a lesson, but in general skiing is contemplative for me. It needs to be; if I think too hard about my technique I end up crashing spectacularly. I guess when it comes to skiing, I'm a Taoist.

Ideally, I'm thinking about beautiful scenery or admiring TNG's developing technique. But other thoughts invariably intrude, and more than a few times I find myself pondering multiple myeloma, as on a ski trip last year I met the second myeloma patient I ever knew.

For the last several years at Millennium, myeloma occupied a lot of my time. Because myeloma was the first disease where Millennium found success, this was natural. It was also two pronged. One goal was to better understand Velcade in myeloma to further develop the drug in that disease, such as going for first line treatment. But it was also seen as an important opportunity to learn how the drug works, so that intelligent decisions could be made about other cancers.

At quarterly company meetings there were often myeloma patients onstage to tell their story. One that particularly stuck in my mind was an oncology nurse who developed the disease, tried Velcade and almost immediately switched to something else; she experienced the full brunt of peripheral neuropathy while on Velcade and could tolerate it. In some ways this seems like a curious choice to inspire your troops, but it did exactly that. We had done good things, but needed to do better. And most people came out of those meetings pretty charged up.

However, these were big presentations on stage, not face-to-face meetings. Even though I occasionally got to rub shoulders with some of the clinical giants of the field, I never met any patients. Not surprising, but somewhat noteworthy.

Last year we were away in New Hampshire for a ski weekend & I struck up a conversation with a group in the lobby. Somehow, it arose that one of their number had cancer, and I couldn't help but ask what sort & it turned out it was myeloma. As is common, someone who should have been enjoying their golden years was instead faced with this dread disease.

Myleoma most commonly strikes late in life. Myleoma arises in most, if not all, cases when a DNA rearrangment occurs within a cell which creates antibodies. Certain rearrangements are necessary for the correct creation of antibodies; these alterations lie at the heart of the system for creating a wide array of antibodies to defend against a wide array of invaders. But sometimes the cut-and-paste glues the wrong two things together, and that can drive a myeloma. Myleoma shows up most commonly late in life. Perhaps this is because the switching machinery loses its edge as life goes on, or perhaps it is just that eventually the wrong number comes up on the immunologic dice.

My chance meeting in that lobby was particularly poignant as it had not been long before that I had met my first myeloma patient, and that was no random stranger. Every year growing up the family would travel west to see my grandparents in Kentucky, and in one direction or the other we would stop by my aunt and uncle in Ohio. My cousins are much older than I, so it was often just my aunt & uncle and my family. With no children to play with, I didn't play a lot of board games there. But I had a lot of fun, as my uncle took me to the Reds or his garden patch or to see a train. He'd murder me in croquet. He took me to the print shop at his high school & show me how to print up a bunch of notepads. In later years, I'd feel humble after failing to explain to him what I did for a living, realizing I had slipped deep into the land of jargon. And he'd try to convince me that no bumpkin from AVon could have written those plays; much more likely they came from the Earl of Oxford.

Eventually, I flew the nest and I no longer saw them on an annual schedule, but he never missed a family wedding and I even made it to one family reunion. I'd avidly read his Christmas letter to catch up with the rest of the clan. Of course, you couldn't believe everything in it, as he was a notorious prankster. Yes, those birthday checks with the crazy name were real ("Fifth Third Bank" -- who's going to believe that?), but he had not been truthful about his WW2 service -- the Army probably doesn't even have dedicated mess kit repair units. No, he actually was a decorated signalman. Only once did he tell a story that didn't happen stateside; it is more than a little guilt for me that I can't remember any details. It wasn't that I wasn't listening, but somehow it didn't stick.

So it really hit home when I found out that this great man, who had given so much to me and others (he was recorded weekly reading for the blind) had been diagnosed with myeloma. It seemed a bit ironic that now that I had a strong personal motivation, I was no longer working in the field. But I did have a long phone chat with him & tried to be useful, though he had been well briefed by his doctor and there wasn't a lot for me to do. I mentioned things like stem cell transplants, and he remarked that he was eighty four, and while he wasn't going to give up there were limits to what he would do; life quality was important.

A goal of modern oncology is to have a patient die with their disease, not of their disease. I do not know how to score this case. About a month and a half before our ski trip a cerebral hemmorhage felled my uncle. Was this myleoma's fault? Thalidomide's? Or a not unlikely result for an elderly american in generally good shape? We cannot cheat death forever, and something must end life. On the other hand, in no way could myleoma be given a free pass -- it certainly gave him undeserved misery near the end.

About a month and a half after the ski trip, I attended a very nice memorial service for him, where dozens of his former students turned out to testify how he had changed their lives. We learned things we never knew about him (he played the tuba?) and remembered the good times.

Whenever I think about myeloma now, I can't help but remember him. I also remember that patient I met in the hotel, and sometimes I still can feel the wetness of his parting friendly gesture on my hand. I didn't ask what medication he was on, but I can assume it wasn't Velcade or Revlimid. Might he been on thalidomide? If so, do standard poodles need to go through STEPS?

1 comment:

reidmp said...

Sorry to hear about your uncle. Cancer close to home is no fun.

I often find myself wondering if MLNM might have evolved differently if more of us at the time had the benefit of a direct connection to the meaning of the work at a human level. Yes we'd see stock photos of patients in company meetings, but it isn't the same thing at all as being the nearby bystander during the downhill and often poignant slide. As you say, ironic and sad when the motivational experiences follow the opportunities instead of the other way around.

Condolences, and best of luck.