The halfway point.

Wednesday was Day 15 of Paul’s radiation treatments, which means that he’s now more than halfway through. But being halfway done means that there’s still halfway to go, and from here, that second half looks really long. Before we left for UWMC Wednesday morning, Paul complained to me, “I’m bored with this game. I want to play a different one.” If only it were that simple.

Instead, we played the usual long Wednesday game again, starting at 9:30am and finishing up around 4:30pm.

DetourThe radiation oncology department has started a remodel of their reception area. Instead of patients following fish, we all now follow detour signs, down a corridor lined with labs and offices, to a makeshift check-in at the small waiting area next to the vaults. A makeshift waiting room has been set up in what was once some sort of pediatric treatment room. (Along with the usual medical stuff on the walls, and curtain tracks on the ceiling, the walls are painted with cartoon sea creatures, as well as a deep-sea diver holding a small sign that reads “Get well soon.” Sweet.) Paul will be done with radiation by the time the remodel is complete, but we’ll see the new reception area when we return for follow-up appointments.

After Paul’s morning radiation, we hung out in an exam room while the rad-onc team of RN Shannon, nutritionist Sarah, resident Dr. Amarnath, and Dr. Liao took turns coming to us. At this point, we’re mostly discussing side effects and how to manage them. Here are the highlights (or lowlights, depending):

Paul’s weight was stable again, which made everyone happy. He had some nausea over the weekend, somewhat controlled by zofran and ativan, but none early in the week. The combo of senna and colace seems to have the constipation situation under control for now. Shannon asked how much exercise he’s getting, and suggested that taking a walk can help with both digestive issues and the fatigue he’s starting to feel. The skin on his face is redder, drier and more irritated. Also, the skin on his fingertips and heels has been splitting, and the corners of his lips, too. (Ouch!) Shannon suggested more moisturizing, which he can do as often as he wants anywhere but his face, and more fluids.

With Sarah, we went into Paul’s food and fluid intake in more depth. She takes careful notes each week, and reviews them with us for any changes the next week. Since last week, Paul has increased his tube feeding as the mucositis in his mouth has increased. He’s still trying to eat as much as he can by mouth; the magic mouthwash helps a lot (and also makes it easier for him to put in the oral stent for his radiation treatments). Swallowing isn’t painful; it’s having food touch the sores in his mouth that hurts.

Dr. Amarnath told Paul that he’s an easy patient, in that we’re not making them do a lot of work to get him through this. Seems that our medical knowledge, the research we do when we have questions, and our ability to figure things out for ourselves are outside of the norm. Sadly, last week was the end of Dr. Amarnath’s residency at UWMC, so we won’t see her again.

Dr. Liao looked at Paul’s face and neck, and told us that most of the blotchy redness we’re seeing is due to the radiation. However, he pointed out a few areas on Paul’s forehead and cheeks that he said are cetuximab rash, though very mild. He still thought that Paul’s skin was holding up quite well to the radiation. When he looked in Paul’s mouth, he commented, “it looks really angry in there,” but he said that there are no longer any clinical signs of the tumor at the back of Paul’s mouth.

Each one of the team asked Paul how much oxycodone he’s taking for pain; when told that he took a total of 15mg the previous day, they all said something to the effect of, “THAT’S ALL?” Paul has been unwilling to take more opiates until he figured out how to mitigate the resultant constipation, which was even more painful than the sores in his mouth. He seems to have gotten that mostly worked out, and as his medical team has reminded him that pain is not his friend, he’s been increasing his oxy intake so that he’s not playing catch-up with the pain.

Paul had chills and achiness the night after his last dose of cetuximab, so when we met with PA Yelena for Paul’s pre-dose lab check, he asked whether he might be developing an allergy. While allergic reactions are rare after the first dose, Yelena added an order for benadryl and steroid pre-meds just in case. She also told us that they don’t stop giving cetuximab due to mild allergies; that only happens when someone has anaphylactic or cardiac reactions.

Aside from taking a little longer because of the pre-meds, the cetuximab infusion went smoothly. Paul got in a good nap while I started to write this post. Then we were off to afternoon radiation, and home for the day.

Yes, I started this post last Wednesday, and it’s taken me so long to write it that we’re now only a day away from another long Wednesday. Paul’s not the only one who’s tired of this game.

By the way, if you have questions about anything we’ve written (or haven’t written), feel free to ask. I, for one, could use the writing prompts.

The first long Wednesday.


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.


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.)


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.