Clear Scans & Maintenance IO
Hope everyone had a wonderful holiday season and a good start to the new year. It’s been a while since my last update, so there is a lot to cover. Overall, things are good - cancer is stable and treatment is manageable and with that, we’re been able to enjoy a bit of travel. I was originally intending to write about the travel in this post, but I think I’ll have to send those separately, as it’s taking a bit longer than expected to write those up properly. In short, the trips were a long weekend trip to Asheville, NC to celebrate our wedding anniversary and a longer trip to Maui and then Berkeley to celebrate birthdays and family time. I get those out in a little bit. The rest of this post will focus mostly on the health update.
Maintenance Immunotherapy
As mentioned in my last post, I’m currently on a maintenance immunotherapy program, with infusions of pembrolizumab (Keytruda) every 6 weeks. I’ve had five such infusions - 31 Aug, 14 Oct, 23 Nov (day before Thanksgiving), 13 Jan and 21 Feb. Since I’m now only getting one drug per infusion visit, the appointments are shorter and I am going less frequently. Though I’m getting 2x the amount of the pembro I received during systemic treatment (400mg vs. 200mg), fortunately, the side effects have been minimal. In the few days following an infusion, I might be slightly more fatigued. In addition, the immuno drugs seem to cause some fullness in my right ear but that typically goes away in a few days.
Scans
I am living from scan to scan. My first monitoring scan was on 15 October, with an MRI of my head/neck. Fortunately, that scan showed stability, i.e. no growth or change in the tumor. So that was quite a relief. I was somewhat nervous since one of the oncologists mentioned that sometimes the drugs peak in cycle 4-5, so there could be growth after finishing chemo.
The plan that we had discussed with both the team at MDACC and at UCM was to do close monitoring - scans every 2-3 months for the first year and then longer intervals after that. So, following the October scans, the original schedule was to do a set of scans - MRI head/neck and CT chest - in early January, since we were traveling throughout most of December. Sadly, though not unexpectedly, insurance approvals got in the way again. I first got wind of this when UCM rescheduled my scans from 10 January to 23 January. Long story short, insurance (in this case Aetna as the carrier and Evicore as the benefits manager to handle procedure approvals/authorization) didn’t agree with the plan. They will not approve scans with intervals less than 3 months. So the 23 Jan date should have been fine, but the appeals processes wasn’t handled well, and I was told that UCM could not file another request for a further 45-60 days. As I’m sure anyone who’s dealt with the healthcare system bureaucracy in the US can attest, the system can be maddening. Plus, it consumes a lot of time and effort that most people do not want to provide towards this issue.
The result of all this? I got my CT chest scan on 23 January (that was approved, as I didn’t have one in October) but no MRI. I didn’t officially get confirmation of the MRI denial until I had already finished my CT scan that day and after spending 2 hours on the phone with insurance. And with no MRI approval, I had to get a CT scan of my head/neck instead, which was performed on 2 February.
Similar to the scans results from October, I had elevated anxiety around the scans and was relieved to hear that the scans continue to show stability, i.e. no suspected growth or recurrence. My anxiety for these Jan/Feb scans is related to the ear fullness that started in mid-December. After flying from Maui to SFO on 16 Dec, my ears, particularly the right one, were full for a few days and then have intermittently full since then. I tried to clear the fullness through the valsalva technique, but to no avail. The first few days were especially concerning since ear fullness is the symptom that resulted in the first cancer diagnosis in 2018. So I spent much of the Christmas and New Year’s holiday worried that cancer may be returning. Unfortunately, I didn’t feel as upbeat as I would have hoped and the concern took me out of the moment. That is, I wasn’t as present for all the time when I was with family, as my mind was running through different scenarios.
The ear fullness did get better but didn’t resolve fully. After the first 2-3 days, when the right ear was full most of the time, I had days when I would wake up with clear (normal) hearing. I hoped that this would have meant the issue was temporary. However, the fullness would return later in the day, but then resolve without any intervention on my part. This continued for the remainder of the time in California. After flying back to Chicago, the issue also persisted. In addition, the tinnitus (ringing) also came back and seemed to be a little more noticeable than before. That being said, it could have been at the same level as before, but I may have had a heightened sensitivity to it.
I had emailed the care team at UCM. Since the fullness was intermittent, they did not think it was likely caused by the recurrence of cancer. However, with the scans pushed back (from 10 Jan to 23 Jan), I would have to wait longer to get confirmation. So on the day of my infusion appointment (13 January), I requested to see someone from the ENT department. The PA and NP I saw gave a very logical explanation of what may have caused the fullness. First, when she did the exam, there was “excessive” ear wax, so much that she could not see the ear drum. After removing the ear wax, her exam and the audiologist exam didn’t reveal anything concerning, with results similar to previous exams. The cause of the fullness and tinnitus, they believe, was water being trapped in the ear canal due to the excessive wax, combined with the pressure changes from the multiple flights caused sensitivity to an already damaged area. We went snorkeling in Maui three times, so I suppose it’s not surprising that water could have gotten trapped. It was the first time I’ve been swimming or underwater since the treatment. This visit definitely reduced some, though not all, of my anxiety. I will have to try to keep my ears cleaner in the future, though.
After my CT chest on 23 January, I had an appointment to see Dr. Roxbury, my ENT, on 25 January. In addition to the standard exam, he also did an endoscopy. He also assured me that everything looked normal. So again my anxiety was reduced. But I was still wanting / needing the scan confirm. That didn’t happen until more than a week later, on 2 February.
While the technologies between a CT and an MRI are quite different, I was assured that the CT could detect if there were any changes to the nasopharynx and if there was a growth. The scan did not show any. In the future, I am expecting to return the original plan - MRI head/neck and CT chest but every 3 months. I suppose one benefit of the CT scan is that it’s much easier for me as the patient. The scan itself is quite shorter - probably only 10-15 minutes for a CT vs. ~45min for an MRI.
Signatera Blood Test
In addition to the scan, I had some blood tests done with Signatera, which would compare my blood against the DNA of the tumor. The first test came back negative and so did the follow up. After that, the medical team at UCM decided not to continue with the testing. The rationale being that since my first result was negative, further tests wouldn’t offer much clinical value. That is, the test is either not sensitive enough to produce a result or there is no tumor remaining. So the only result from the test that would have validity would be if it came back positive as an early sign of recurrence. But is something we’ll be monitoring with the scans.
Side Effects and Other Issues
I have been trying to adapt the “new new normal” of increased anxiety. This isn’t an everyday issue, but it does crop up from time to time, especially around episodes where I am a little sick or have concerns. Any sort of illness makes me question whether it is a normal illness, related to immunotherapy treatment, related to a long-term side effect of radiation, or the recurrence of cancer. So every minor issue, no matter if it it has reasonable explanation, makes me worried, at least until it completely goes away. Even when I get a headache, I can’t rule out that it’s not the tumor returning and pushing against a nerve in my head. Only when I wake up the next day without any pain and without any pain killers do I feel more comfortable that it’s not tumor-related.
In the past few months, another issue that’s come up is the muscle spasm / seizures / cramp the right side of my mouth and tongue. I was freaked out the first few times it happened. This usually occurs while I’m eating and it results a temporary lack of ability to swallow or talk normally. It goes away after a few minutes and seems to return to normal, but we are still not sure what is causing this. I did see the speech pathologist about the issue, and the recommendation is to continue to do the exercises. But this may end up being a long-term issue I’ll have to deal with. It was quite concerning at first, but now it doesn’t really cause me much worry.
Thank you again for reading all the way through this medical-related post. I can’t complain about my health. I can still enjoy all the flavors and have no restrictions on my activity and energy levels. Hopefully my next posts will illustrate what I mean and provide more visual evidence.