Penny’s Blog

Nuke me

Posted on: February 20, 2009

On Tuesday I had a consultation with a radiologist, Dr. Morris, and his physician’s assistant, Ms. Kovak.  As has been the case with other medical staff at the UNC Cancer Center, these guys were thoughtful, communicative, and willing to answer all my questions.   I had gone into the appointment ready to say, “Hah! I reject your barbaric, unnecessary treatment!” but Dr. Morris made a considered and persuasive case for radiation therapy:

  • There isn’t a great deal of research, but one study of Non-Hodgkin patients found that there was significantly less recurrence in patients who got chemo followed by radiation therapy, compared to those who got chemo alone.
  • Dr. Morris proposes using a low enough dose (30 Gray) that there’s no risk of damage to the teeth and gums—so there goes one of my main objections.
  • Dr. Morris  also pointed out that the site of the original lymphoma—my jaw—would make it difficult to notice any potential recurrence.  Worst case scenario, the first sign we’d have that the disease had come back would be that my jaw would fracture.  Therefore, it’s better to err on the side of caution.
  • He said, “If you opted not to get radiation therapy, I wouldn’t be upset, but then I would strongly recommend that you get two more rounds of chemo.”  Ack!  At this point, all you have to do is use the words “more” and “chemo” in the same sentence, and I’m off and running in the other direction.

I thought things over a couple of days, and today made an appointment for the first step, “simulation.” That’s a series of procedures to determine exactly where the beam will be aimed during radiation. Here is a description of the process. They’ll use a mask (as in slide 2) for me, and make marks on the mask rather than on my skin.

We’ll then schedule the radiation treatments—17 sessions, every weekday for 3 1/2 weeks. (A lot of sessions, yes, but each appointment lasts only about 15 minutes.)  The side effects should be temporary:  dry/sore mouth, bad taste, itchy skin and, as treatment progresses and the blood counts go down, that old familiar fatigue.

All the patient education handouts state, “Don’t worry!  Getting radiation therapy will not make you radioactive.” That’s not something that would have occurred to me, but the concern must come up pretty frequently.  So, just in case you were expecting me to glow in the dark*, be advised.  And also know that it’s safe to hug me.

(*which, I must say, could make me a big hit at a party, or on the dance floor.)

One final thing… During our consult, Dr. Morris told me some background I hadn’t heard until now.  When the pathologists analyzed my biopsy from this past September and saw Diffuse Large B-Cell Lymphoma, they also went back and took another look at the very first biopsy I’d had done, in February 2005.  In  ’05 they interpreted the biopsy results as abnormal/atypical but inconclusive. This time, however, the analysts said, “Hmm, yes… In fact, the 2005 biopsy shows intermediate [aggressive] to high grade [very aggressive] B-cell lymphoma.”  Two things about this puzzle me:

  • How can their interpretation of the slides be so different now?
  • If their new interpretation is correct, that means I’ve had an “aggressive” lymphoma since at least late 2004, yet five years later it was still just Stage I.  How did it stay so localized? (Not that I’m complaining, mind you.)

Knowing the answers to those questions, of course, would not make any difference.

More later.  Love and thanks to you all.

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  • None
  • dswope: I just happened by after my I received an email from a close colegue that he was headig for IVPalooza. All I knew was that it was a form of chemo.
  • Brian: Hi Penny; When I was diagnosed with non-Hodgkin lymphoma I found your site. Reading about what you went through was incredibly helpful to me. Tha
  • Tricia: Still here; still caring; still rooting you on!

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