The first long Wednesday.

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As Paul mentioned in his last post, Wednesdays are big treatment days: the morning and afternoon radiation doses bookend appointments with his radiation oncologist, Dr. Liao, his nutritionist, Sarah, his boy, Elroy (not really, just making sure you’re paying attention), and one of the med-onc folks (PA Yelena, or Dr. Baik), plus a blood draw, a PICC dressing change, and a cetuximab infusion.

So, yesterday would have been a long day even had Paul not spent most of the previous night dealing with unpleasant side effects of opiates (constipation) and antibiotics (diarrhea) dueling in his gut. Paul was definitely the loser in that battle. He didn’t sleep much, and when we left for UWMC at 9am, he was dehydrated and feeling nauseated.

After a blood draw at the chemotherapy infusion suite, we went to Paul’s morning radiation. In the waiting room, the white board showed Machine B as “on time”, and Paul’s pager went off right at 10am. After he came out from dosing, we had just a short wait before the doctor appointment.

We talked first with Dr. Liao’s resident, Dr. Amarnath, and Shannon, one of the radiation nurses. They got the story of the previous night’s gut wars. While they were concerned, they felt – as did we – that these weren’t radiation side effects, and suggested discussing with the med-onc team. They verified that he’s following protocol for oral and skin care, and asked if we had questions.

One question we had concerned the overall schedule for Paul’s radiation. When we first met with the rad-onc team, Dr. Amarnath told us that the typical treatment is five days a week for seven weeks, but Paul has appointments for only six weeks of radiation. Dr. Amarnath explained that, as Paul is getting a lower dosage of radiation twice daily, there might be fewer days to reach the total dosage. To confirm that, she took us to to look at Paul’s treatment plan.

At a computer monitor, she pulled up a set of multi-colored images, CT scans on which the team had colored in the important structures in Paul’s head, and mapped the radiation dosage to the tumor and the surrounding tissues. She explained that, while Paul’s PET scan showed no spread of the cancer, they are delivering some radiation to adjacent areas that they know from experience are the locations where this tumor would spread, were it to do so. The intensity-modulated radiation therapy (IMRT) they’re using allows them to control dosages much better than they could even a decade ago.

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As Paul noticed, and Dr. Amaranth confirmed, the horizontal “slices” are taken looking UP from the ground, so the right side of Paul’s head is on the left side of the image. (After years of reading floor plans, I have a hard time making the mental shift to looking “up” at the image, so I mentally flip Paul into a headstand, and then look “down” at his chin. Works for me.)

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In the corner of an image, Dr. Amarnath found a notation that the total radiation dosage was fractionated into 60 units; at two units a day, that’s 30 days, or six weeks. That means Paul will be done on July 10.  (It occurs to me as I write this that Paul has no radiation appointments on July 4, so he’s currently scheduled for only 29 days. We’ll have to check on that.)

When Dr. Liao came in to talk with us, he reviewed what we’d discussed with Dr. Amarnath and Shannon. He mentioned that, when devising Paul’s treatment plan, they’d also considered using proton therapy rather than IMRT, and had developed a treatment plan for that as well. While there were pros and cons to each, they decided that the cons (including skin toxicity) associated with proton therapy outweighed the pros in Paul’s case.

Dr. Liao asked Paul how his pain was, and Paul said that the pain at the back of his mouth had decreased since treatment started, so he’d been tapering his dosage of oxycodone, and hadn’t taken any pain meds (oxy or tylenol) for 10 or 11 hours (down from every 4-5 hours).

When Dr. Liao looked in Paul’s mouth, he got excited. He said that there is a visible change in the part of the tumor that’s on the surface at the back of Paul’s mouth, that it has decreased in size by at least 30%, and is much flatter. And this is after only two doses of cetuximab and four days of radiation; they usually get this sort of response halfway through treatment! Not only is Paul’s tumor responding to treatment; it’s responding quickly and dramatically. (When Dr. Liao left the room, we both got a little teary about that.)

We also asked Dr. Liao what type Paul’s tumor is. (I’d heard a couple of other patients discussing theirs in the radiation waiting room, and wasn’t sure what they were referring to.) He said that it used to be that most oral cancers were attributed to smoking and alcohol use, and were diagnosed in people in their 50s and older. Within the past couple of decades, however, oral cancers have become much more common among non-smokers and people under 50. These cancers have been linked to the human papilloma virus (HPV), the same virus responsible for most cervical cancer in women. (Just this week, actor Michael Douglas made the news for talking about HPV, his throat cancer, and oral sex. How timely.) HPV-related tumors tend to respond to radiation treatment better than tobacco-related tumors, so if you’re going to get oral cancer, this is the better type to have. As Paul is neither a smoker nor a heavy drinker, and was first diagnosed with oral cancer at 44, it may be that his cancer is HPV-related. Dr. Liao has requested that the tissue from Paul’s biopsy be tested for HPV, but hasn’t received the report yet.

(I remember finding something on the internet about the HPV connection to oral cancer back in 2004, and asking Dr. Futran about it, but there was little data available at the time.)

Next we met with the nutritionist. Paul has lost 7 pounds since the first of May, which ordinarily wouldn’t be a bad thing, but in the world of head and neck radiation treatment, that’s not good, especially so early in treatment. Paul’s appetite has decreased, and his mouth is becoming sensitive to acidic foods, so he’s been eating less. But, as Sarah reminded us, he’ll burn more calories while he’s in treatment, so he really needs more calories now than he was before treatment. While Paul has been using the feeding tube to supplement fluids, he hasn’t used it for food, but we agreed that it was time to get that going, so Sarah called in the order for the supplies, which were delivered last night.

And that was our morning. In the 90 minutes between morning and afternoon appointments, we found a nice spot to sit outside and enjoy the unusually lovely weather we’re having. I ate lunch. Paul ate one cracker, felt worse, and put his head down on the table for a rest. That’s when I took the photo at the top of this post.

The only items of note from the afternoon appointments were: Yelena told us that Paul’s white cell count is up a bit (what’s up with that? we don’t know); Paul got a big bag of IV fluids, half an Ativan (for nausea), and a good nap along with his dose of cetuximab; and his radiation date with Machine B was less than (the already usual) 45 minutes late.

So, did you get the takeaway for this post? I know I buried the lead, so here it is again: Paul’s tumor is responding quickly and dramatically to treatment.

p.s. I realize there’s some radiation background we haven’t given you yet, but the way-back machine was out of service today. Later.

10 thoughts on “The first long Wednesday.

  1. Fantastic news. You know, if you are going to bury a lead, you should not put it in bold. But you are forgiven, as this isn’t journalism, after all. Terrific news. I am looking forward to spending the penultimate Super-Wednesday with you both.

  2. Glad to hear that Paul’s tumor is responding like the over achiever it’s host is! His body on the other hand is rebelling because it is smart enough to know that the whole thing stinks! Too bad you can’t have one without the other….one more day closer to the end. Props to you both.

  3. Take THAT you stupid tumor! Really glad to hear it’s responding quickly and dramatically. OK, so that just gave me a vision of the tumor with a big pointy witch’s hat on its head going, “I’m mellllllting!”

  4. I’m really glad to hear that Paul is responding to the treatment well and quickly. I’m also somewhat amused that he has the trendy, sexy, Michael Douglass-type of cancer. Way to time it to the news-cycle, Paul :-)
    Thinking of you both. xox

  5. Wow! Just…wow. This is wonderful news. I mean, the GI tract problems sound pretty miserable, but if that’s the temporary tradeoff for the removal of the cancer, it’s all good. How about a 10th of July celebration, or maybe something a little later? I would be delighted to share my birthday celebration (7/16) with this, which, as far as I’m concerned, is a whole lot more significant.

  6. Thanks for the update. Glad to hear there is great response so soon-and you may get a reduced sentence. Sorry to hear about the side effects, but make sure you keep on probiotics (thos active cultures of Lactobaccillus, like in Culturelle or just some yogurt in water, along with the liquids through the G-tube. Treatments can definitely throw the normal gut flora out of whack).

  7. It’s really wonderful, that in with all the energy sapping and miserable routines, you get the news that Paul’s tumor is responding quickly to treatment. At least you know you’re on the right path. I just wish it didn’t have to be so hard…

  8. Great photo viewed with catch of breath and clenching gut, but text read with hope excited. Intense gratitude, Kim, for your reporting and on the scene support of Paul. Comments of the loyal, some names familiar over decades, heart warming.

  9. Oof! What a journey! I’m so very glad to hear the dramatic progress. Hang in there, you two! Thinking of you and sending healing thoughts your way.

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