Continued Stability
There was more good news from my most recent visit to MD Anderson Cancer Center. I was in Houston 16-18 September for my regular scans and doctor consults. In addition to the MRI of my head & neck, I also got a CT and an Ultrasound on my neck to check on my thyroglossal duct cyst (TDC) that was infected during my last visit in June. The good news is that both were scans were stable, with no progression. That is, there is no visible tumor in my nasopharynx and the size of the cyst in my neck remains the same.
Dr. Phan (radiation oncologist) wants to see me again in 3 months and then move to a 4 month follow up interval after that. The potential issue is that I also want to have surgery to remove the TDC on my next visit, but a return visit just before the holidays and New Year isn’t ideal for recovery.
The visit to MDACC came 10 days after our return from a six week trip to Central Asia - Kyrgyzstan and Uzbekistan. More to come on that trip - I’ll try to post pictures with captions rather than a long narrative to read. The countries are beautiful, though in different ways - Kyrgyzstan for its untouched, natural beauty, Uzbekistan for its historical structures as the capital of the Timurid Empire and being key outposts on the Silk Road.
Prior to planning the trip, I checked with the doctors and nurses, and everyone told me that pushing back my regularly scheduled immunotherapy infusion by ~2 weeks was fine. During the trip, from a health perspective, I felt normal. There were no new or unexpected issues - just the ones I’ve been managing for a while, primarily dry mouth, swallowing and jaw tightness, and skin rashes. The dry mouth was slightly worse than usual (similar to when I was there in October 2023). But overall, I didn’t feel any different than normal.
MD Anderson Visit
This trip to MDACC was slightly longer than my usual 2 day/1 night schedule. Because I was getting the additional CT and ultrasound scans, and there was no afternoon availability, I had to fly in on a Monday night. My Tuesday schedule was light, with just the two scans that don’t take very long once they started. The Wednesday schedule was the typical MDACC schedule - a scan in the morning, followed by 4 consults before catching my return flight to Chicago that night.
Since March 2024, when I got news that the tumor had resolved (no longer visible), my goal for these visits is stability. Even when there is great news, my feeling is more of relief than of elation or joy. That doesn’t mean I don’t get nervous before hearing my results - it’s more that a good outcome is what is hoped for and expected but a bad outcome would be devastating. The goal is to continue on maintenance immunotherapy for another year - through August 2025 (two years after SBRT), at which point the risk of recurrence decreases significantly.
On Wednesday, the MRI this time was at a reasonable hour - 9am (vs. the 6am scan time on previous visits). As a veteran of MRIs, the procedure is fine for me - I can lay still for the 45 minute, and I know what to expect. I didn’t expect a radiologist to formally read the results before seeing the doctors, as on my previous visits, the results were available that quickly. Mentally, I thought I would be fairly relaxed that morning.
Prior to my first appointment, the team took my vitals. My body seemed to be more nervous than my mind, as my blood pressure was 156/94. Not as high as some of my other nervous periods, but it seemed like my body was more nervous than my mind.
My first consult was with Dr. Maniakas, an ENT. I first met him, in June when he squeezed me in after the discovery of the duct cyst. He has a very positive and pleasant demeanor that I like a lot. He started off the visit by mentioning that all three scans looked great. I wasn’t expecting him to read the MRI, but he said that it didn’t show any tumor. That was definitely a relief, even if he had mentioned it in passing.
The main topic of my visit with him was to decide on the course of action for the thyroglossal duct cyst issue. The CT and in particular the ultrasound were the more relevant scans in terms of TDC. Dr. Maniakas first remarked that the lymph node that was biopsied previously was stable and didn’t change in size. I had almost forgotten about that issue since it hasn’t been of concern for while (and I haven’t had a PET scan recently). For the TDC, he said that there was no change and that the inflammation had decreased since my last visit.
As for the next steps, and we came to conclusion that a surgery to remove the TDC sooner rather than later is the best course of action. The risk of waiting is that if I get another infection before the TDC is removed, the surgery and recovery from it become more complicated as there is more scar tissue. He said the surgery is fairly straightforward and not high risk, despite being in my throat area. Given what he sees on the scans, he doesn’t think there is a need to remove my hyoid bone or my thyroid gland, so only the TDC would be removed. He won’t know for sure until he starts the surgery, but he was confident that the surrounding structures would be intact. So that is good news.
As far as scheduling and recovery, Dr. Maniakas is in the OR on Thursday and Friday. So I could do my normal MRI and consults and Wednesday and then have surgery early on Thursday (as in check in at 5am). Post-surgery, the protocol is to have overnight observation in the hospital, as the rare complications could be serious and would need to be addressed immediately. There shouldn’t be much pain that requires more than a Tylenol. I would be discharged on Friday and then can fly back that day. So the trip would likely be a Tuesday-Friday.
The recovery from this surgery should be full and complete, after two weeks. The first day is a liquid diet, followed by soft foods the next day or two. I should be able to resume a normal diet after that. However, the main concern is around “heavy” lifting. Dr. Maniakas said that I can't lift anything over 10 lbs for 2 weeks post-surgery. Logistically, that means traveling with a roll aboard (and asking the flight attendant to put it overhead on my return flight) and not bringing a backpack or any other bag. Finally, there shouldn't be a noticeable scar - he said the incision would be in one of the natural folds in my neck. Overall, the benefits of having the surgery seem to outweigh the risks, so I’ll plan to schedule it soon.
After a short lunch break, my next consult was with Dr. Phan. After Dr. Maniakas broke the good news about the MRI, my blood pressure came all the way down to 127/86 (from 154/96 before learning of the scan results).
I didn't see Dr. Phan on my previous visit, so it was nice to get his opinion this time. He was very upbeat and his positivity was beyond my expectations. He confirmed that not only is there no tumor visible, but the surrounding structures continue to heal very well - less inflammation. He said that around this time is when there may be flareups, but I’ve avoided those again. Dr. Phan was “very happy” with more improvement to come. Unlike previous visits, he didn’t show me the images from the MRI, perhaps because there is nothing of note to see. I was a little surprised that he wanted to see me again in three months vs. four, though.
Dr. Phan and I actually spent a decent part of my consult talking about my recent travels to Kyrgyzstan and Uzbekistan. He said that he is looking to make a trip, so I showed him some pictures and talked about some of my experiences.
Remarkably, I remained on schedule, which had me at 1:00pm with Dr. Phan, 1:45pm with Dr. Barbon and 2:30pm with Dr. Johnson. I was a little bit anxious to see Dr. Barbon - the kind of anxiousness that comes from not having done my homework knowing the teacher would review it. As I had been traveling in Central Asia, I didn’t maintain a regular rehab routine for my swallow, speech, tongue and mouth exercises. Fortunately, Dr. Barbon was understanding of the situation and encouraged me to get back to my routine. In addition, my movement and strength were relatively stable from the the last time - 43mm opening and around 49 for the IOPI.
That being said, as I think I’ve mentioned before, the speech rehab is probably the most impactful in terms of my daily function and quality of life. Dr. Phan also noted that I need to keep on top of these exercises, as there is a chance things could do downhill quickly because of the cumulative radiation effects.
Overall, I think my function is still fine. I do notice some deficiencies, though. For example, while in Central Asia, some food, especially leaner meats, would get caught in my throat or were more difficult to swallow. I’ve also noticed that my neck/jaw muscles have stiffened more frequently - not so much that they seize up and I’m temporarily incapacitated, but enough that I need to do self massage on them. I notice this sometimes after I do my exercises, which tells me that I need to get back to my regular routine.
My final appointment was with Dr. Johnson, a medical oncologist. She was filling in for Dr. Gillison, who was away at a conference in Barcelona (most likely ESMO). This was another straightforward visit. The main topic we discussed was skin toxicity, i.e. skin rashes. She reiterated that the longer I’m on immunotherapy, the less predictable the onset of the rashes are. I’ll continue to manage with the triamcinolone, moisturizers and anti-histamines. These help reduce the itching. The good thing is that the rashes are not overly irritating or itchy, so no need to change my planned course of treatment.
Like Dr. Phan, Dr. Barbon and Dr. Johnson were upbeat. That’s of the reason why I actually enjoy the visits to MDACC. The care team has a very pleasant manner and their positivity gives me encouragement.
The only issue now is when to schedule my return visit. I could go back in mid-December to keep on the 3 month interval preferred by Dr. Phan. If I do that, I’ll have to decide whether to make a separate trip to have the TDC surgery or wait until April 2025 on my subsequent followup.
Non-Medical
Given the slightly more relaxed schedule, I was able to have lunch and two dinners in Houston. For Tuesday lunch, I went back to Feges BBQ. This is place I’ve tried to visit several times but each time they were sold out. I went early enough this time and I had a full selection. The place is known for its sides as well, so I got a meat platter with brisket and turkey, along with pimento mac & cheese and sweet + spicy brussels sprouts.
Feges BBQ - pimento mac & cheese, sweet & spicy brussels sprouts, turkey & brisket platter
One was a more casual dinner with Josh, a friend from my fantasy premier league group. Coincidentally, we met when we were tied atop the league standings, albeit only 4 weeks into a 38 week season.
I also had dinner at Kiran’s, an Indian restaurant celebrating its 20th anniversary. This is a restaurant that I’ve been wanting to try for a while, and a recent write up by a local Houston critic extolling its virtues finally got me to go. It was a great meal. I opted against the tasting menu and ordered a few items a la carte. I started with the crab malabar, a cold appetizer with jumbo lump crab and crispy okra. Excellent way to start - not too heavy and packed with flavor. The server suggested the Punjabi Thali as my main course so that I could try more flavors. The thali included butter chicken, lamb saag, and prawn bhuna, served with saffron rice, garlic naan, papadum, raita and kachumber salad. She described the portions as “tiny”, but in reality they were Texas-sized. I think there were 4-5 pieces of protein in each of those dishes. I did manage to finish nearly all of it (no leftovers), but didn’t have enough room to try a naanza (pizza) or dessert. All of the dishes were excellent, and the butter chicken was one of the best I’ve ever had. It had just the right amount of spice and a hint of smoke, which I liked. I’ll definitely be back for that. It ranks alongside the potatoes au gratin at Pappas Bros as my most crave worthy dishes in Houston.
That’s all for now. Hopefully the medical side of this blog has similar new to the past few visits and there isn’t much new information to process. I’ll do my best to update the travel side, especially with photos (and less narrative).
Thank you again for the continued support.