Change of Course

It's been way too long since my last post.  I think it's because I was feeling low about getting "kicked out" of the RAD001 trial :(.  It was nice to think that I could just take a pill every day, and I'd start to get better.  Unfortunately, it wasn't working that way for me.  At my last visit to DFCI, Dr. Treon decided we should do a bone marrow biopsy to see if the disease was going anywhere.  There was basically no change to the extent of invasion in the marrow.  So even though the blood IgM levels had been going down, the disease load wasn't improving.  Somehow, the RAD001 got the tumor cells to secrete less IgM, but was not reducing the number of evil cells.

So that led to another difficult decision about treatment.  Dr. Treon recommended some form of treatment with Rituxan.  He laid out the pros and cons of 4 different combination therapies:  Velcade/Dexamethasone/Rituxan; Bendamustine/Rituxan; Cytoxan/Dexamethasone/Rituxan; or Pomalidamide/Dexamethasone/Rituxan (in trial at DFCI).  To make a long and tortured story short, I settled on the Cytoxan option.  Velcade has some scary side effects (particularly peripheral neuropathy, a severe tingling and/or pain in feet and hands);  there's very little data on the long-term side effects of Bendamustine therapy; and Pomalidamide has caused low blood counts in some patients.  Cytoxan has its own issues: it can cause genetic mutations, but it has been in use for decades and oncologists have "tuned" the dosage pretty well by now.  All of these can be administered locally, although the Pomalidamide would be started in Boston and would require a monthly trip up there.

My local hematologist also suggested Rituxan alone, but Dr. Treon pointed out that combination therapy has had much better results.

In an earlier post, before going on the trial, I had decided to try Velcade.  I've read a lot more about it since then, hence my decision to go in a different direction.

I also looked into a number of clinical trials - some sound very intriguing - but ultimately decided that since I've tried one experiment, now I'll try the "traditional" treatment.  WM is an indolent disease, and my symptoms haven't been too bad, so if the Rituxan doesn't work, I can try something else after that.

So on October 4, my wife Jodi brought me up to the cancer center at Overlook Hospital to start my infusions.  I'll get infusions every three weeks for six or eight rounds, depending on the response.  I felt fairly optimistic, because the regimen has been in use for many years and is pretty well understood.  As Dr. Treon told me, it's not rocket science.  The infusion lasted about 5 hours, and Jodi hung around for moral support.  There wasn't much to do, really, and she was able to get some work done.

Rituxan is a derived from a mouse antibody.  When your body encounters it, it's not unusual to get a severe allergic reaction as your own antibodies gear up to ward off this intruder.  So they start you off with a big dose of IV benadryl to try to lessen the reaction.  That made me pretty drowsy, and I napped for the first hour or two.  The Rituxan infusion is started at a low rate, and increased every hour or so, again to try to control the allergic reaction.  If there's a reaction, they slow it down or stop it until the sneezing or whatever stops.  I was lucky, I guess - I had no ill effects at all.  At the end of the day, I expected to be able to go to work on Tuesday.

That's when the trouble started.  I woke up Tuesday feeling a little nauseous - a normal reaction to the Cytoxan - so I started taking anti-nausea pills on a four-hour schedule.  Then I was exhausted all day.  I was able to work a few hours from home.  On Wednesday, I managed to get in to work - I really wanted to resume normal life - but I arrived late and had to leave early because I was so fatigued.  I actually was a little worried on the drive home that my reaction time might be slowed down enough to be dangerous.  Thursday was a little better - and that's when I noticed that the pill bottle said "may cause drowsiness."  So I switched over to a different pill that you could take on a 12 hour schedule, and felt much better.  I'm not sure whether it was the pill or the Cytoxan reaction that caused the problem.  I guess I can find out after the next infusion.

The weekend was OK - I was tired, but not like during the week, more like the anemia-related tiredness that I'm pretty used to.