One Month Post-SBRT Update
It’s now been a month since I finished my last SBRT treatment on 23 August, so I figure to provide an update. Overall, things are about as good as they can be from my perspective, and I’m quite appreciative and fortunate for how things have gone so far. In summary, I feel pretty close to how I felt before I started treatment - my energy is normal, and I don’t have any pain. I actually have a less anxiety and am feeling more optimistic now. I have had to manage a few expected side effects so far from the radiation, though other effects may still come later. My next major checkpoint is scheduled for 13 December, when I’ll be returning to MD Anderson for the first post-SBRT scans and meeting with my doctors.
In the meantime, and to avoid burying the lede, I got some potentially good news last week. Concurrent with my regularly scheduled maintenance IO at UCM, I had blood drawn for my EBV and Signatera (ctDNA) tests. The good news is that the EBV test came back “Undetected”. This is the same lab and test methodology that returned a Detected level of 56 IU/ml prior to treatment. So the “Undetected” result is a possible indication that the treatment is working as expected and the tumor is no longer progressing or possibly even no longer active. The result is better than any Detected level and certainly better than a rising level (that would be extremely concerning, as that would indicate the tumor is growing despite getting blasted with radiation). The major caveat, as I had previously noted, is that Dr. Gillison doesn’t place great significance on this test, as my levels are near the lower limits of the test detection bounds, where the margin of error is higher. In any case, I’d rather see the “Undetected” result than deal with the anxiety of seeing a rising or still detected result. So that’s a major relief.
In addition, I had my annual physical the following day and everything seems normal. Overall, it was continued good news on the medical front.
Side Effects Update
Upon returning to Chicago from Houston, I tried to maintain a low stress level and uncluttered schedule. The first two weeks were quite enjoyable, as Dr. Phan’s team recommended that I maintain a high calorie (3000+/day) diet. That meant I was able to enjoy entire late night ice cream pints guilt-free. I also tried to re-create (not that successfully) the Pappas Bros potatoes au gratin, with heavy cream and lots of cheese, and a pasta alfredo. I don’t believe I’m hyper metabolic at this point, as I am now starting to see increases in weight with increased consumption.
The radiation may have had five side effects: i) additional / increased fullness and tinnitus in the right ear; ii) sensitivity in the back of my mouth/throat; iii) increased dry mouth; iv) declining swallowing function and v) additional nasal discharge. Some of these may be long-term side effects of the 2018 radiation than the 2023 radiation, though. In addition, some of these have been short-term and already resolved, though some will remain issues for a while.
Starting with the right ear, this is expected and something that likely won’t go away. To this day, I still have slightly more fullness and tinnitus, which includes noticing more high pitched sounds. The good news is that I notice it only occasionally, and it seems intermittent as opposed to persistent. I can also usually clear the fullness with the valsalva maneuver. I think I’ll just have to get used to it.
Moving to my mouth and throat, the sensitivity was temporary and lasted through early September (about first two weeks following treatment). I’m back to normal now. After having trouble drinking my morning tea and struggling to eat my home made chicken tikka masala, I found out that the SBRT treatment zone included the back of my throat. That meant that my throat was sensitive to hot liquids, as well as spicy and acidic foods, in addition to alcohol (but I was continuing my alcohol abstinence, so I didn’t test it). Compared to 2018, this was quite mild and very easy to manage, especially since it didn’t last very long. I’m also glad this started after treatment, as it didn’t hinder my Houston dining experiences.
The dry mouth may not necessarily be related to SBRT, as it may be more seasonal. My mouth was quite dry in Houston and that continued in Chicago. My completely dry mouth - no saliva at all - would cause me to wake up both in the middle of the night and in the morning. The doctors said that my salivary glands shouldn’t have been affected by SBRT, so this could be a long-term effect of the 2018 treatment. While I previously estimated that I only lost 20% of my salivary glands, now I think the loss is a bit more - potentially 30-50%. I need to take more dry mouth mouthwash and xylitol lozenges to try to maintain moisture.
More concerning is the declining swallow capability. Again, this is more likely a long-term effect of the 2018 treatment, potentially exacerbated by the SBRT. This shows up in at least two ways. First, I have more frequent nasal regurgitation (when food or drink goes back up through my nose). Second, I’ve had more food get stuck in my throat, which I’ll cough up 15-60 minutes later. What’s concerning is that the foods that are stuck now are not especially challenging foods. That is, soft foods like grilled peppers shouldn’t get stuck, but they are. Third, I’ve also experienced uncomfortable hiccups. It’s like my whole body convulses for a few minutes, and it may be related to food getting stuck in my throat. During this time, I can’t really do much as hiccups are pretty severe, and I end up expelling food that is halfway down my throat. I’ll be sure to do my swallow exercises and get this re-examined when I go back for my swallow study and speech pathology appointments.
The nasal discharge seems to be a temporary issue that took about 3-4 weeks to resolve. I’m still not sure if this was seasonal or potentially ulceration (which Dr. Phan mentioned is an expected side effect). While I had this, it felt like my nose was constantly runny - thin, clear discharge. This is dissimilar to the thicker, green-ish mucous when I’m sick with a cold. It was more annoying than anything else, as I didn’t feel less energetic.
To summarize, the issues that were temporary and have already resolved include the throat sensitivity, dry mouth and nasal discharge, while the increased fullness/tinnitus and declining swallow capability may be more persistent. Fortunately, neither are at levels that impact my day-to-day functionality most of the time.
More Uplifting Thoughts & Activities
Having finished treatment relieves a mental burden. For much of the summer, I spent time getting second opinions (including travel logistics around it), doing my own research, evaluating the treatment options, and coordinating the logistics of it all. With the treatment now behind me, those issues are no longer draining my mental energy and thoughts. I’ve been able to focus on more fun and pleasant things. Earlier in September, Charles started pre-school. He’s doing half days every weekday. It’s the first time where it’s just him, his teachers and his classmates. This is different from the parent-tot program he did last year where either me, Aiday or Lupe were with him 1 day/wk.) He seems to be handling the separation very well, and he’s quite happy and looks forward to going. It’s also a chance for us to meet more families with similar aged kids. It’ll be interesting to see how Charles develops and who he befriends.
Finally, we are going to Kyrgyzstan for two weeks in October. It’ll be my first time visiting Aiday’s homeland. I’m feeling good and don’t have other concerns at this time, so the timing work out well. We had planned for Charles to visit his relatives in Singapore and Kyrgyzstan as our next two “big” trips. We didn’t expect that they’d happen 3 months apart from each other! I’ll plan to include some photos and a journal in a subsequent post.