This is a brief cancer update. In my last update, I shared some data from a recent PET scan. The recurring rib tumor had responded well to the chemo I’ve been going through for the last few months. I pointed out some random green spots in one of the images that at the time I thought were random background spots. Upon meeting with my oncologist, however, it appears that these spots are actually new tumors. There are perhaps 6 in all, most quite small.
In an image from July, 2 new spots appear on the right. At the time, these were thought to be random background activity.From the September PET scan, some spots from July persist. These may represent new tumors, probably genetically distinct from the original ones. The original rib tumor was very responsive to the recent chemotherapy.A possible new tumor exists behind the right kidney, between 2 ribs.
The most predominant of these is a tumor in an intercostal region between 2 ribs on my right sight. I actually had radiation treatment on this new tumor last week. I have a chemo infusion later this week that will change things up and be more aggressive than previous infusions. I had a Next Generation Sequencing blood test that might have helped determine the genetics of the new tumors. Unfortunately, it wasn’t quite sensitive enough to detect the small number of tumor cells now in my blood.
As you know, new tumor activity for a cancer patient is usually not a good sign. In spite of this, I’m still feeling optimistic for reasons I will share in a future post. Continue to pray for wisdom for my doctors and for us.
Don’t fear, but be smart, Erik
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This is a brief but important cancer update. I know it’s been a long time since my last update, but we haven’t had significant news for awhile. As you’ve read before, I’m going through a new set of chemo treatments right now, in response to my July PET scan results. I’m in my 4th round right now, with my 5th of 6 scheduled treatments happening next week. My NGS test results from a few weeks ago show that the new rib tumor is genetically the same as the original one, so the same chemo agents should continue to be effective.
I had another PET scan on Tuesday of this week. The results are very encouraging!
The red spot in the lower left is the returned tumor in the rib. The lung tumor has not returned.The rib tumor is much reduced from the July PET scan. The background you see on the upper left is normal metabolism in the liver.A 3D image of the rib tumor on the lower left. In this image, the original lung tumor would be on the upper right, but it has not returned.The rib tumor is much improved. The other random green spots are likely random background metabolism. A CT scan done at the same time will confirm this. We will discuss these results with my oncologist on Thursday.
We will meet with my oncologist on Thursday to discuss the results and plan next steps. I don’t think we will actually deviate from the current plan.
I continue to have significant pain from the muscles in my lower right torso. These muscles are trying to stabilize my rib cage. Like occurred in March, I think my nerves are healing after my recent radiation treatments, and they are currently hypersensitive. They will get better with time.
Don’t fear, but be smart, Erik
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This is a cancer update. In response to a recent PET scan, I started my second set of chemo rounds on July 10th. This time, I plan to have 6 rounds instead of just 4. While my new rib tumor is much smaller than the first time, we want to give it more rounds this time, so we make sure we get everything.
NGS: We reanalyzed my tumor using Next Generation Sequencing. This amazing new technology allow scientists to sequencing many different pieces of DNA in the same sample. In this case, instead of a biopsy, they took a blood sample and looked for their targets, a particular set of gene, in the sample. Even though my tumor cells would be a tiny minority of the total cells in my blood, NGS can still find them and sequence them individually. Happily, analysis shows that my new tumor is genetically the same as my old one, so it should respond to chemotherapy in the same way, just as we hoped.
I also took a monitoring test that finds and counts the number of tumor cells in my blood, which will help us track progress in the future. This is a different technology called real-time PCR. I have worked extensively with both of these technologies at my job at Quest Diagnostics, and in my current consulting business.
Chemotherapy: The July 10th chemo itself went well. Usually, the week after is the worst part. I take some medications in the few days surrounding the actual infusion. They counter act many of the side effects I might normally feel like nausea and fatigue. I stop taking some of these medications on Monday, so Tuesday and Wednesday of the following week are usually the worst. This time, since I’m so much healthier in general than last time, my “bad week” was much better, just a little sleepiness and a little skin irritation, both very manageable. I actually started my second new round yesterday with another infusion.
Kathy and I enjoy a celebratory bag of Doritos during yesterday’s infusion. Don’t mind my pasty complexion. I pretty much always look like that. Photo credit: Kathy Johnson
Radiation: As it turns out, my radiation oncologist says they can treat the rib tumor again, since I didn’t get too much radiation the first time. I’ve already had my mapping session, and I start radiation next week. This will greatly accelerate rib tumor healing. It will likely make me even sleepier next week. So if you call or text next week, you may not hear from me for a while! But weeks 2 and 3 will be better, because of my better overall health. Outdoor meetings are definitely possible!
Thank you so much for your continued prayers! It’s definitely helping!
Don’t fear, but be smart, Erik
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As I said in my last update, March was a difficult month. Despite some great test results, my nerves were growing back and causing some extra pain in my torso.
April and May were much better! I had steady progress in my nerve and muscle pain in my torso every week! I also started doing exercises in the pool, under the instruction of my physical therapist. The climax of this was a bunch of traveling that I would not have dared to attempt a few months ago!
A week few weeks ago, I went to Virginia to visit my parents. My sister lives there too, and my brother came out from Montana as well. It was great seeing everyone, and they were happy to see that I was doing well! I was a little concerned about walking through the airports and lifting my bag into the overhead, but all of that stuff went well! I was very pleased!
Kathy and I on the plane waiting for takeoff.Broose, Gretchen, and I in Virginia. So great to be together!
Then, just last week, we took a road trip to Oregon! I was even more nervous about this trip, because it involved a lot of driving, which has been difficult for me in the last few months. Thanks to the good lumbar support in my wife’s Highlander, the trip went well! This was a milestone in my recovery, and demonstrates that I am ready to do more than I have been doing so far!
Driving back from Oregon, between Klamath Falls and Weed. Yes, that’s the magnificent Mount Shasta in the background. Before this trip, I hadn’t driven any farther than Orange County!
I’m very thankful that everything went well!
My next PET scan is at the end of June, and I will let you know the results!
I actually plan to go back to work part-time this month! I’m looking forward to getting back to normal life!
Thank you so much for your continued prayers!
Don’t fear, but be smart! Erik
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As you know, I’m done with chemo and radiation treatments, but I’m still recovering from complications stemming from my cancer. I have some medium news and some great news to share today!
Rib progress: First the medium news. I wanted to find out how close my broken rib was to being intact, so I asked my chiropractor to take an X-ray of the area and send it her radiologist. The results were different than I expected. First, there is some confusion about what ribs were affected. Some radiologists say the 8th rib, some the 9th, and some both. This radiologist says both. The great news is, the 8th rib seems to be intact, and is pretty much healed. The 9th rib however is a much more complicated story. The next paragraph and photos may be TMI for some. If you’re easily grossed out, you might want to skip them.
I always thought the rib was merely broken and the cancer had damaged the bones on either side, creating a space in between them. This may have been true for the 8th rib, but the 9th is another story. Instead of breaking the rib, the tumor got inside the rib and pushed material outward, creating a kind of bubble of material, see attached photos. My bone cells may remodel this rib back to looking normal, or they may just leave it be. Only time will tell.
Figure A shows a hot dog shaped area of “expansile” bone around the 9th rib, clarified in Figure B.
The continuing damage to my 9th rib may explain why I have persistent tenderness in several of my torso muscles, making things like bending over and sitting in an office chair for long periods difficult. Physical therapy is definitely helping, but it will take a while for my muscles to adapt.
Lung capacity: Now for the great news! Until last week, I hadn’t had a cold in years. On the few occasions that I coughed or sneezed, it was extremely painful. My ribs have been much better for the past few months, and I finally caught a cold last week. I did A LOT of coughing and sneezing, but it wasn’t nearly as bad as it might have been earlier. As it turns out, all that coughing helped break up material in my lungs and helped them dry out. After my cold, my lung capacity had improved a lot! My cold was a blessing in disguise!
I have a device called a spirometer that kind of measures my lung capacity. After my cold, I could max out the spirometer easily! So on Sunday, Kathy and I decided to see if I could climb a local small peak, Mount Calavera, on a hike I often do with a neighbor. We went up slowly and methodically, but I only needed to stop twice and we made it to the top! I actually see this as a big milestone!
Climbing the steep east slope of Mount Calavera. Brought my trekking poles so I didn’t lose my footing!The view of the ocean from the top was particularly gratifying! On September 13th, I could barely get out of my hospital bed without passing out!My wife Kathy is always by my side!
It’s been more than a month since my last update! To recap, a PET scan showed that the primary tumor in my lung has shrunk a lot and the secondary tumor on my rib is essentially gone. While it seems to me like progress since then is more gradual than I’d like, I definitely see some nice milestones as I look back on the month. While I’m done with radiation and chemo, I’m still getting immunotherapy infusions.
First, I was able to quit taking my last opioid medications a few weeks ago! This granted me the wonderful freedom of being able to drive again! My first solo trip was to grab a carne asada burrito with some friends. I’ve really enjoyed being able to drive myself around again (not too far!), and Kathy has enjoyed a little time to herself at home!
I’m continuing with my physical therapy. My posture is much better, and I’m not so hunchy anymore. A lingering issue is that the muscles of my right lower torso are still quite grumpy. My PT thinks it’s because they are trying to stabilize my rib cage because of the broken rib. While my muscles are loosening up and I’m making progress, I won’t be totally back to normal until my rib completely heals. My oncologist thinks the remaining pieces are about a centimeter or 2 from each other now, so it will still be a while before they come together completely. It’s still a challenge to pick up something off the floor, or to pick up something heavy.
My lung capacity is not back to normal, but I have made big progress. We go for a walk in our neighborhood almost every day. When we first started, I could only make it about 25 yards before I had to come back. Just yesterday, we walked our pre-cancer route, which is 2 miles, with 2 uphill sections. I have to take it slow sometimes, but it’s very nice to know I can go that far. When I return to work, I’ll need to be able to walk quickly around airports to travel again!
That’s all for now. I may not send out another update until after my next PET scan, which will be late March.
Keep praying for better lung capacity, that my rib would heal quickly, and that my torso muscles would settle down.
Don’t fear, but be smart! Erik
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On Monday, I went in for my PET scan. In this procedure, radioactively labeled sugars are injected and allowed to be taken up by cells in the body. Because cancer cells particularly love sugar, the radioactivity mostly ends up in the cancer cells. Scanning for radioactivity highlights the location of tumor tissue.
While not gone, the size of the lung tumor is much reduced. The chemo agents will continue to work for a few more weeks, and the immunotherapy will take care of the rest. Prognosis remains good!While some concentration of sugars is apparent at the rib site, my oncologist said the rib tumor is essentially gone.A 3D image, before and after for both tumors. The rib tumor is essentially gone. Technically, the dimensions of the lung tumor is a little smaller, but you can see that the tumor is much narrower and smaller by mass.
Earlier this morning, we met with our oncologist, and he was very happy with the results! There is some of the lung tumor left, but the rib tumor is essentially gone. He said we won’t need to do any more chemo, but we will continue with the immunotherapy. Even though we’re all done with chemo, it will actually continue to work for a few more weeks.
Since immunotherapy is so new, it’s not really known how long it we will use it. The initial studies were done for 2 years, so he’s saying we’ll potentially go for 2 years, but he also said there’s a good chance we’ll stop early, depending on how things go. I’ll get another PET scan in March to see how things are going.
So the news is good! I still have limited lung capacity, which I’m looking forward to getting over, but I’m steadily improving if slowly. My visits to physical therapy are producing improvements to my posture and strength too.
Thanks for your continued prayers! Erik
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This is a note about the current Avian Flu epidemic spreading among poultry and dairy farms in the US, and which has been in the news in the last few days.
In the last few years, an H5N1 strain of the flu has been spreading among commercial poultry and even dairy farms, causing a lot of trouble for farmers, including the culling of animals. According to the CDC, 66 humans have been infected in the US during this same time period. So far, all of these people were infected because of close contact with birds or cattle. There is still no human to human transmission.
The reason avian influenza is in the news right now is that there is a case of severe disease in a human in Louisiana. DNA sequencing has been done on the strain in this case, and it appears that there was significant mutation that occurred in the infected individual. Mutation in a human host makes it more likely that the new strain may be able to infect other humans directly. The mutations were in the Hemagglutinin protein, the protein from which the H in H5N1 is derived.
Structure of the Influenza Virus. Hemagglutinin and Neuraminidase are surface proteins that mediate infection in animal cells. These proteins are when the H and N designations come from in H5N1.
Again I want to be clear that no human to human transmission has been detected as of yet, so there is not yet any need to go into COVID mode! However, if you work with poultry or cattle, you should be more cautious. Wash your hands regularly, and make sure fluids from your animals stay out of your mouth, nose or eyes. This includes milk! If you drink raw milk, make sure you are getting your milk from a source that performs regular testing for flu. Also, if you have back yard chickens, you should limit your birds’ contact with wild birds by keeping them in a coup with a roof, even one made of wire is fine.
As usual, make sure chicken products are cooked thoroughly before consumption.
There has also been a significant number of cases in house cats. If you can keep your house cat indoors, it might be a good idea to do that until things die down.
The State of California has declared a state of emergency regarding this flu outbreak. My opinion is that this is premature, since we still don’t have human to human transmission. I will continue to monitor the situation, and will let you know if more concern is warranted.
This is a cancer update. Yesterday I had my last of 4 expected chemo infusions, and my first of many immunotherapy infusions. I mentioned before that I take an anti-side effect medication for the first weekend, but I’ll be fatigued for some of next week. There may also be some additional side effects from the immunotherapy, Keytruda.
I’ve been very cautious about getting sick up until now, since I didn’t want to have to postpone treatments. But after next week, I’ll probably start being more free to “move about the cabin” as it were.
Writing this very blog, earlier today! Broose and his wife Penny bought me this sweet chair, which practically dumps me out of the chair if I want. Super comfy!
This last round has not been without drama. On the Sunday right after my last infusion, I passed out twice within a few minutes of each other. I was probably only out for a few seconds both times. I ended up going to the ER but my visit there was actually pretty uneventful. They couldn’t really find anything, and said it was pretty much just the chemo. So Kathy took me home after a few hours, and I’ll just need to remember to get low right away if I get lightheaded again. We’re always thankful when they don’t admit me!
My chemo side effects have been quite mild, which I’ve been very happy about. I threw up a lot after the first infusion, but not the others, which is great. I have another kind of amusing side effect of chemo that I’ve never been aware of. My skin is shedding a lot, kind of like full body dandruff! Kathy jokes that it’s like having her own personal snow globe! Every time I change my clothes, there’s a flurry of “snow” as I fold them! Kathy even says that I look younger with reduced age spots! And no, I don’t recommend this method of exfoliation! Anyone else have this side effect?
After a low weight of 165 lbs, I’m back up to 180, which is great. I’m going to take a little pause from the weight gain until I can start meeting with my physical therapist on the 16th. My target weight is 190 to 195, and I want to put on some muscle instead of fat! So I’m cutting back from 2 bowls of ice cream a day to just one!! Favorites are Mint Chip, Mocha, and Cherry from Tillamook. This is just an interesting detail. Please don’t leave a bunch of ice cream on my porch!
A little detail about my daily life is that we love Gospel music and I’ve have fallen into the habit of waking up to “You are the Living Word” and “Give Me a Clean Heart” by Fred Hammond. They’re great songs, with great bass lines, of course. I try and get out of bed before the first one is over!
Back to the medical side, my prognosis remains good and my tumors are shrinking faster than anticipated. I’ll get a PET-scan on the 30th. For this test, I have radioactive sugar injected, then wait 45 minutes for the cancer cells to suck it up. Cancer cells love sugar, and quickly absorb the radiolabeled glucose. Then I get scanned in a specialized scanner and see how the tumors look. PET scans are the most sensitive way to detect tumors and allow doctors to see even small tumors wherever they are. My chemo oncologist expects that my rib tumor will already be completely gone, and that my primary lung tumor will be much reduced. The chemo will continue working for awhile, and the immunotherapy will continue for to up to 2 years!
A word on immunotherapy. As mentioned in Update 7, immunotherapy agents cause T and B cells to attack tumor cells. Some tumor cells express a surface protein called PD-L1. This protein causes the immune system to see the tumor as “self” by binding to the PD-1 protein on T and B cells. Keytruda stops these proteins from binding to each other, causing the T and B cells to see the tumor as alien. Unfortunately, this can cause some normal cells to appear alien as well, leading to some side effects. My autoimmune disease is not expected to be impacted by all this, but I’ll need to be monitored to make sure. My oncologist says that since my tumors have a lot of PD-L1, this therapy may work especially well on my tumors. Depending on how I respond, I may end up being on Keytruda for up to 2 years!!
Please continue to pray that my tumors will become normal lung tissue and not scar tissue. I’ve also had some shortness of breath for the last 2 weeks, but I’ve seen some improvement over the last few days. Pray that my lung capacity improves!
Merry Christmas and Happy Hanukkah, Erik
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My 3rd round of chemo started with an infusion yesterday. For the first few days of a new round, I’m on some extra medication that counteracts some of the negative side-effects of the chemo agents. So while I’m on those medications, I’m actually feeling really good! Those medications will run out on Sunday, so starting Monday is when I start “Fatigue Week”, which for me has been just sleepiness. Until then, I’m actually feeling good and can do my normal 2 short walks a day, and even do my stair exercises. “Fatigue Week” has generally lasted just from Monday to Thursday or so, and then I’ve been turning a corner on Friday, which I expect to happen this week as well.
I usually go on 2 short walks a day. Then I do 5 sets of stairs after my walk, trying to regain muscle mass after my long hospital stay. It’s already making a difference!
I caught a very mild viral infection this time, and had to be more strict on having visitors. Fewer visitors, and always meeting out on the patio from now on. Despite that, my White Blood Cell count remained fine for a person on chemo, so my 3rd round started on time. I also finished my radiation treatments on Friday, November 8th, so I’m very happy to be done with that. Now it’s just chemo, and immunotherapy starting with my next chemo round in early December. People tolerate immunotherapy very well.
Because I’m halfway through chemo, Kathy remarked that it felt like “Wednesday”, like we just have to endure a few more days before the welcome end. Everyone from students to adults in the workplace know what that feels like!
Right now, I’m thinking as if my chemo journey will end around December 14th, when I’ll emerge from my “bad week” for that round. Then I’ll need to start working out, regaining the strength I lost while in the hospital. It’ll take me a few months to get back to my ideal weight, and be ready to travel again. So by Christmastime, I should be mostly back to normal.
Results continue to be very good, and my prognosis remains very good!
Thanks again for all your prayers! We continue to pray that my tumor tissue will become lung tissue, and not just scar tissue, to maximize my hiking, backpacking and skiing abilities, some of my favorite activities!
Also pray that my broken rib will heal quickly! We still have no idea how long it will take, but it will be much longer than the usual 6 weeks, since the pieces are not sitting right next to each other yet, but have to grow together before they can mend.
Don’t fear, but be smart, Erik
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