B is the word.

By , on February 1, 2010

C Word

OK, let’s talk about cancer.

I was diagnosed in January 2008 with type (or grade) 3 follicular lymphoma, stage IV.  Follicular lymphoma is slow-growing, or indolent, so as for most people it was only discovered for me in an advanced stage.  I went to the doctor (Group Health Seattle) mostly concerned that I was losing weight (down from 220 or so to 200 pounds in a few months).  My GP noted that I apparently had an enlarged spleen and suggested that I have a CT scan that day.  At 6PM (on a Friday) he called with the news.  This was, how shall I say, a shock.  Though of course in retrospect I should have thought that the enlarged nodes in my groin were unusual; I thought they were just tendons or something that I could now feel due to the weight loss.  My spleen indeed was revealed to be “massively enlarged”, 27cm in length compared to the usual 12cm.

A lymph node biopsy the next week confirmed the diagnosis.  I started treatment at the end of January, the first of six rounds of R-CHOP, the standard treatment for this most common of non-Hodgkin lymphomas.  The R is for Rituximab (or Rituxan), the relatively new high-tech therapy for lymphoma.  Rituximab is a monoclonal antibody which attaches to the CD20 protein on B cells causing one’s own immune system to attack and kill them.  The rest of CHOP is traditional anti-cancer drugs that go after all fast-growing cells, causing hair loss, nausea, etc.

The therapy worked great in reducing the size of my lymph nodes and spleen right away.  In fact, after the second treatment I felt great; only then did it become clear to me that I had really been sick before diagnosis.  Generally I tolerated the treatments pretty well after the first one, which was fairly jarring.  I mostly remember being really hungry, and having some truly transcendental food moments (a sandwich at Salumi and a burrito at Tacos Guaymas in particular).  In the end I gained back almost all the weight I’d lost, but hey, that’s OK.

Another unexpected benefit was that a nagging cough that had been bothering me for almost a year turned out to be lymphoma-related.  This is not unusual, as lymphoma often manifests in the chest.  Anyway, the cough went away after the first treatment, which was very nice.

After six treatments I was pretty trashed, though.  Fortunately scans then showed the nodes were gone, and my spleen was returning to normal size, so we decided to stop at six.  The last treatment was in mid-May 2008.

Perhaps the oddest after-effect was in early June, when I suddenly developed a really annoying full-body rash.  We thought at first it might be a reaction to the contrast dye used for the CT scan, but that didn’t really make sense, as it was rather delayed for that to be the cause.  The rash declined over time but never really went away.  Eventually it was diagnosed as psoriasis.  I guess when you mess with the immune system you don’t know what will happen.

Scans later in 2008 showed no node growth, which was good.  Then in February 2009 I noticed a lump on my left jaw.  This is a classic lymph node location so there was no question what it was.  A scan in March confirmed that nodes elsewhere were growing too.  This was disappointing of course, but we always knew it would come back at some point.  And follicular lymphoma is slow-growing (though type 3 is the fastest-growing type), so people do live with it for years.  We decided to watch and wait rather than treating right away.

This continued through the rest of 2009.  At the end of 2009 I decided to change my insurance plan so I could be seen at the Seattle Cancer Care Alliance rather than at Group Health.  I wasn’t unhappy with GHC, but SCCA may be the best place in the world for cancer treatment, and clearly I was headed for more.  I know several people who have been treated at SCCA and they all say it’s the best, so I made the move.  Unfortunately delays in transferring records and getting a first appointment set up coincided with a sudden flareup of tumor growth, but that’s the subject of the next post.

1 Comment to “C Word”

  1. Jenifer Morgan says:

    “27cm in length compared to the usual 12cm”

    I can’t get the hang of these metric measurements.

    Once I converted the centimeters to inches (“10.6 inches in length compared to the usual 4.7 inches”), I know see how staggering the difference in size is.

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