Cycle 4 Update, Delay & Outings
It’s been a little while since the last update, but things are mostly good. Hopefully everyone had a fun and safe holiday. Here is the summary of this update:
Scans after cycle 4 (taken on 29 June) showed continue regression of the tumor, i.e. it keeps getting smaller
Cumulative impact of chemo / immunotherapy starting to take effect. That is, I’m feeling more fatigued and nauseated than in prior cycles, but it’s still manageable
Cycle 5 was supposed to start on 6 July, but low blood counts means that everything will be delayed by about a week. Assuming no further delays, the last infusion is now scheduled for Wednesday, 10 August
Recent outings: we have taken a few trips outside of Chicago the past few weeks, so will post some pictures
Progress Scan
The good news is that the progress scans after cycle 4 show further regression (shrinking) of the tumor and no spread. The CT scan of my chest (which only took about 5 minutes) was clear. The MRI of my head was also encouraging. When we saw Dr. Rosenberg to discuss the scan, he said the tumor was “poorly differentiated.” For context, he said that he could see that the left and right sides of my pharynx were not symmetrical but that the tumor itself is harder to distinguish. He showed us the side by side images for a) pre-treatment, b) after cycle 2 and c) after cycle 4. The tumor in the cycle 4 scan doesn’t light up the same way as it does in the previous scans (though that could be the difference in the machines).
The radiologist report, released after our viewing with Dr. Rosenberg, states “there is regression of the treated right nasopharyngeal tumor with what could represent residual tumor with less diffusion restriction that measures about 7 by 12mm in axial section and persistent surrounding patchy enhancement in the right parapharyngeal, masticator and prevertebral spaces.” The report also notes that “Further decrease in size of the treated nasopharyngeal cancer with what could be associated inflammation of the surrounding soft tissues.” So it seems like the 7x12mm tumor may be just inflamed tissue that may or may not be cancerous. By comparison, the tumor was 21x35mm pre-treatment and 10x15mm after cycle 2. I’m not sure if there will or can be additional tests (after cycle 6) that can be more definitive whether any residual tumor is cancerous. We’ll have to find out later.
Side by side images, with the most current (29 June) on the left, cycle 2 (16 May) in the middle, and pre-treatment (26 Feb) on the right.
I had been slightly nervous getting the results of the scan. That is because I’ve had more persistent fullness in my right ear. It’s an odd feeling when it lasts for several days, as I have uneven hearing. In previous cycles, I only had this fullness for 1-2 days, typically in the first few days of the cycle, and then my hearing would be normal. I thought that was because the immuno drugs were being active in the area. So when I had more fullness through day 15 of this cycle, I was fearful that the tumor was growing. But that is not the case! More likely, the fullness is caused by inflammation or some other impact on the Eustachian tube from the treatment. So seeing the images from the scan relieved that fear.
Cumulative Effects
The cumulative impact of the drugs is starting to take a toll. While the first 3 cycles followed a very similar pattern, the side effects in the fourth cycle lasted for much longer. Previously, I would feel pretty good on day 2 (thanks to all the anti-nausea and steroid drugs) but then get tired on days 3-5 (Friday-Sunday) and then feel pretty close to normal for days 6-7. The day 8 infusion of gemcitabine would have a minimal impact. So by the start of the second weekend, I would be pretty close to normal. In this cycle, my tiredness and nausea lasted through day 11 (the following Sat). Overall, it was still relatively mild. The nausea felt like heartburn and/or an upset stomach combined with a general lack of motivation to do anything - a sort of a malaise. This led to an occasional decrease in appetite as well. Fortunately, this was only passing (usually at dinner). The tiredness was potentially related to or caused an unusual sleep pattern. I would wake up between 4-4:30am in the morning and then hit an energy wall between 5-6pm. After that time, I was pretty much useless for the rest of the day. I would eat dinner, then try to put Charles to sleep. Sometimes he’d sleep in my arms for a few hours while I myself was asleep from 8-9:30pm. I’d wake up and then just move from the La-Z-Boy back to bed. I also noticed that my physical stamina is below where it normally is. I tried to do a HIIT class at the gym but found that I had to take more frequent rests during a set than normal. At least I’m still able to move and be somewhat active.
A few other side effects started this cycle as well. I now notice that my tongue has a little bit of sensitivity, particularly to spicy foods. I can still eat it, but not too much at a time. I also had a case of vein infiltration, aka extravasation. That is, some of the drugs (in this case the gemcitabine on D8) leaked out from the vein and into the surrounding tissue. It caused some swelling and tenderness of my arm and skin tightness. This seemed to peak around Father’s Day (19 June) but it’s mostly healed now. Hopefully the remaining cycles won’t be too much worse in terms of side effects.
Treatment Delay
The start of cycle 5 has been delayed by a week due to low blood counts. That means that all my treatments will be delayed a week, so the last infusion is now scheduled for 10 August, assuming no further delays. At the time of my blood draw (21 June), my blood counts were very high and above the high end of the range. I had taken 3 Zarxio injections that prior weekend. I asked how many I should take this time and my nurse said to not take any. Unfortunately, without the injections, my blood counts dropped below the low end of the range and into a zone where treatment was withheld. It also means that I need to particularly cautious the next few days since I don’t have sufficient white blood cells to fight any infection. I’ll be back to taking 3 injections weekly to make sure there won’t be any further delays.
In addition, they are now adding supportive IV to the treatment plan, as some of the kidney function tests were concerning. That means I’ll be making at least 1 additional trip per week to DCAM to sit an in infusion bay for a few hours. So it goes.
Recent Outings
The low blood counts do not affect how I feel physically. That is, this past week felt pretty normal in terms of energy. Over the weekend, we did two day trips, one to Morton Arboretum (about 45min west of where we live) and another one to Milwaukee (about 90min away). Both allowed us to get out of our neighborhood for a bit and enjoy different surroundings.
Morton Arboretum is a place we’ve gone to regularly, as it’s a nice change of scenery from the city. In addition to the trees, green space, and a nice children’s playground, one feature that we quite enjoy is the rotating exhibit of sculptures. The current exhibit is called “Human+Nature”, by Daniel Popper, a South African artist. They are large scale, 15-26ft tall sculptures that are quite photogenic.
We usually go back to Milwaukee a few times a year, in part to revisit places we like and to try new ones. This trip featured two new places - Discovery World, a science center, and Mitchell Park Domes, a covered public garden. Discovery World is located on the waterfront, near the Milwaukee Art Museum. Charles is very much into trains these days, so we figured he’d enjoy the “All Aboard” model railway exhibit. We also went to Mitchell Park Domes, a conservatory, for the first time. The “floral show dome” featured a fun faerie garden exhibit, with miniature sculptures throughout the garden.
As usual, we had a few food destinations in mind as well. We tried Solly’s Grille, a James Beard America’s Classic Restaurant for 2022, who invented the butter burger. It was good but it’s not super high on the return list. Definitely a lot of butter in the burger. We also went back to Lakefront Brewery, which has a some very good cheese curds (even though I couldn’t drink any of their beers).
Last but not least, it was also Father’s Day since my last update. As usual, Aiday went above and beyond and created the perfect gift. Charles (“little guy”) and I (“big guy”) now have matching T-shirts. It did attract some compliments when we were out at Kasama, enjoying a casual Filipino brunch.
Our matching T-shirts
Thank you again for all your support.