B is the word.

By , on May 21, 2012

C Word

As I enter the next phase of treatment perhaps it’s a good time for a medical recap. Regular readers and the easily bored should skip to the end.

In January 2008 I went to the doctor about unexplained weight loss.  After a CT scan and a subsequent lymph node biopsy I was diagnosed with follicular lymphoma, a type of non-Hodgkin lymphoma. It is relatively slow-growing and often not detected until it is in an advanced stage, as mine was. From February to May 2008 I was treated with a chemo regimen called R-CHOP. CHOP is a set of traditional anti-cancer agents. The R is for rituximab, a monoclonal antibody that is something of a wonder drug. I responded well to this treatment, with clear scans later in 2008. You don’t ever get back to normal after cancer treatment, but I felt OK.

In February 2009 I felt a lump on my jaw and knew that the lymphoma had come back. This was disappointing (one word for it) since I had been hoping to get a few symptom-free years from the R-CHOP treatment. Since my only symptom was slightly swollen nodes, we held off more treatment until the end of the year, when I moved to the Seattle Cancer Care Alliance (SCCA) for further care. You can read more details about this period in this post.

In January 2010 things got hairy as what eventually became a large tumor started growing on my forehead. Given the rather quick return of my symptoms more of the same chemo would not do much good, so the recommendation was to get a stem cell transplant (formally an autologous hematopoietic peripheral blood stem cell transplant), a specialty of SCCA. “Autologous” means that my own stem cells were harvested, then put back into me (the transplant) after my blood production system had been wiped out by heavy-duty chemo and irradiation. The idea is that the rebooted blood production system would be cancer-free. I started treatment (more rituximab plus some other stuff) in February 2010, and had the transplant May 26. I spent much of June in the hospital  (an SCT is kind of a big deal) then rest of the summer coming back to something like normal.  There are many posts from this period with blow by blow accounts.

I did return to something like normal life, but I was beset by fatigue and achiness. This is not unusual for SCT survivors, but my low blood numbers were a concern. In October 2010 I had an extensive workup that didn’t reveal anything obvious. Over time my health and energy stabilized, but I felt as though I had gone from age 56 to 66 in a few months. I have needed a large number of red blood transfusions (I’m getting blood as I type this) in the last couple of years.

Fast forward to January 2012, when after many medical adventures it was decided to expend some serious effort to figure out why my blood production has been so poor. The ensuing diagnosis was myelodysplastic syndrome (MDS), a “secondary” cancer that is almost certainly the result of the radiation and chemo I got with the SCT. The recommendation: another SCT, allogeneic this time, meaning someone else’s stem cells. I am remarkably lucky that my brother is a match for my HLA type, so he will be coming up to Seattle to be my stem cell donor (thanks, big guy).

So here I am, at day 1599 since my initial diagnosis, day 726 since my first transplant. Seems like yesterday. I will enter the transplant program again on May 30. My brother Mike will be by my side. We will both undergo a battery of tests to make sure we’re good to go. He will go home to LA, while my workup continues into June. Then he’ll come back to Seattle in mid-June, and be given a drug (Neupogen) to pump up his stem cell production. Meanwhile I’ll be getting chemo and radiation more or less like two years ago, though less intense (I  hope). Then some time around June 21, the summer solstice, I’ll have yet another birthday (hmm, does that mean my 2010-reborn self is no longer with us?) with yet another blood system, this time my brother’s.

This time for sure” as Bullwinkle used to say. If this tricktreatment works, it will fix (“cure” maybe?) not only the MDS but the lymphoma. This will no doubt be at substantial cost. At the very least it will be another sucky summer; this makes three in a row.  I may well be in the hospital for the Euro 2012 final (everyone’s betting on Spain but I think the Nederlanders may sneak by this time), which would be a bummer. I’ll miss a lot of work, but I’m hoping to get enough leave donations from kind and generous UW friends to get me through.

If it doesn’t work I guess I’ll need a new hat.

In any case I’ll do my best to keep everyone up to date.


3 Comments to “This time for sure”

  1. Jane says:

    Hoping and praying that this will be the treatment that kicks all the bad stuff out! Thanks for blogging and keeping us updated.

  2. Marcia Taylor says:

    Bob, my heart is with you.

  3. Kitty says:

    Rooting for you from afar

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