Announcement #4

November 14, 2008

Dear Friends and Family:

I am writing this from the Mayo Clinic, where we have just gotten some good news. Tests here have indicated a dramatic drop in the monoclonal proteins produced by the myeloma. After completion of just a single round of velcade chemotherapy, the level of monoclonal proteins dropped by about 70%, from a level that just three weeks ago was threatening kidney damage to a still high, but less physically threatening, level. This means that I am responding very well to the velcade, and getting better.

The biggest physical symptom I’m now grappling with is muscle pain—as opposed to the bone pain that was my nemesis before taking velcade. The muscles in my back, in particular, have been tensed for so long that they are susceptible to spasms, and it is at its worst after a nap or in the morning after a night’s sleep. When the spasms hit, they are so painful that everything else must stop. The plan is to treat these spasms with massage, heat, and muscle relaxants. So far, not much response, but it is early in the treatment yet.

The plan now is for me to undergo three more rounds of velcade chemotherapy in Kalamazoo. If this results in the virtual elimination of the monoclonal proteins, as is expected, by mid-January we will be ready for the next step, which will be taken in Rochester, Minnesota. First, they will harvest my stem cells. This process will take about a week. Second, they will do two runs of an extremely powerful chemotherapy agent that will drive the myeloma down to almost zero, but in the process, destroy much of my immune system. This will take only a couple of days. Third, they will transplant my stem cells back into me, where they will slowly develop into a new immune system. This will take 5-8 weeks to happen, depending on possible setbacks (for example, I could get a nasty opportunistic infection that, in some cases, would be life-threatening). But if all goes well, by mid-March, I should be able to return home from Mayo, with a new immune system, and in a stable remission.

There are lots of possible obstacles in the way, not least of which are the opportunistic infections that could easily get hard to control within the context of a compromised immune system. About one in every one hundred transplants, the patient does not survive. Virtually 100% of transplant patients suffer from mouth sores, nausea, and other uncomfortable side effects. For at least a couple of weeks post-transplant, I will be weak and exhausted.

But these are risks I am willing to take. I am already in less pain than I have been for two months. The prospect of getting back to a normal life again—no pain, normal-strength bones—makes this entire intermediate struggle and unpleasantness seem worthwhile.

I’ll keep you updated as this great adventure continues!

Warm regards,

Joel