This is a cancer update. In Update 20, I told you that while my original tumors are responding well to treatment, I have several new tumors that are not. Since then, we have changed my treatment approach in several ways. I’m using a different cocktail of chemo agents, as well as some different immunotherapy agents.
Until about a month ago, my pain was gradually increasing as my new tumors grew. Happily, my new treatment regimen is apparently working! For the last month or so, my pain level has been decreasing, allowing me to tune down my pain meds. Additionally, a PET scan just yesterday revealed that the new tumors, which weren’t responding to the old treatment regimen, are responding well to the new one.
This image shows a reduced rib tumor on the bottom left, but persistent small tumors in the lung above them.In this recent image, it’s difficult to orient the photo, since even the “persistent” tumors are now gone.In July, the rib tumor had begun to reappear.Now, the rib tumor is now mostly gone.This is the new intercostal (between the ribs) tumor in July. the large blob of activity just above it is a kidney, which often light up in PET scans as they filter out radioactive sugars.The new intercostal tumor is now responding well to treatment. This tumor was not responding until we changed our treatment regimen.
The new chemo regimen is a little harder on me. I’ve actually had to postpone a few treatments because my blood cell levels were too low. I even had one today that I will postpone until next week. So unfortunately, this means I will be more reclusive this Christmas season, mostly staying at home. I do occasionally have meals with people outdoors, though, COVID style! We don’t yet know how long I will continue doing chemo. We will discuss this with my oncologist next week.
We wish you a very Merry Christmas and a Happy Hanukkah! Erik
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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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I have some sobering news. I had a PET scan on Tuesday and it appears that the rib tumor is trying to make a comeback. My original treatment plan had just 4 rounds of chemo, and then immunotherapy after that. While the chemotherapy worked well, it appears that the immunotherapy has not been as effective as was hoped.
As you can see in the images, the rib tumor was basically absent in the March 30th image, but has reappeared in the image from this week (July 1st).
The rib tumor is essentially gone. You can see the “expansile” nature of the damaged rib in the March image. The extra green you see is background activity in the liver.As you can see, the rib tumor has reappeared, although still much smaller than the original size.The primary lung tumor is very faint in this image, and the rib tumor is gone.The rib tumor is still smaller and less hypermetabolic (Cancer cells use lots of sugar, which makes them light up in a PET scan. This is called hypermetabolism) than it was before.
We met with my oncologist this morning. Since the chemo was effective last Fall, and the tumor is now much smaller than it was back then, he is very hopeful that it will be effective again. While we will do another Next Generation Sequencing test to determine the genetics of the tumor, he expects that it will not have changed significantly since the first time. So the same chemo treatment should still be effective. Tentatively, we plan 6 rounds this time, instead of the 4 we had before. We will likely start next Thursday.
I’m in much better shape this time than I was last time. Last time, I was still struggling with serious complications from my pleural effusion, and the big infection I had. This time, I’m in generally good health, much stronger, and doing well except for the remaining rib pain. The lung tumor has not returned.
All this to say, there is a lot of reason for hope.
But my hope is not just in technology. Our God is the Maker of heaven and earth (a Hebrew idiom for everything!) and He does whatever He wants. Man does not live by bread alone, but by every Word that proceeds from the mouth of God (Deuteronomy 8:3, Matthew 4:4). This means that if God says I will live, then I will live. We have already experienced legitimate miracles during our journey, and I am confident that we will experience more. God isn’t finished with me yet!
Once I start my new treatment, I expect to be tired and somewhat immunocompromised, so I’ll need to stay close to home again. My energy permitting, I’d love to hang out with you in the warm sun in my backyard.
If you are a praying person, I would of course love to have your continued prayers.
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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Last week was probably my last hard week after an infusion, as I probably won’t have another chemo infusion! So to extend my analogy from my “Wednesday” post, it’s now “Friday”! I should be feeling better from here on out. My chemo oncologist also said no more immunotherapy until they see the results from my PET scan on December 30th, so I get a nice little Christmas vacation from my immunotherapy too! My next update will probably be after the 30th, letting you know my PET scan results.
I was pretty sleepy this time, and my fatigue from chemo my have been compounded by the immunotherapy. There are other potential side effects from immunotherapy, but happily, I didn’t really experience any of those. The sleepiness just lasted a few extra days.
I had an appointment with my physical therapist for the first time in many months. I had a laundry list of things to work on, and it will take us a while to work through them all. I lost significant strength and muscle mass while in the hospital, so I worked on a bunch of exercises primarily designed to improve my leg and core strength, and to improve my posture, which has gone funky since my hospital stay. I’ve gotten started on doing my exercises at home and I’m looking forward to improvement.
Strengthening my upper back musclesThis looks like a wall sit, but it’s mostly for working on my posture.
Please continue to pray for improved lung capacity. I’m still short of breath, meaning that my Vital Capacity, the volume of air that I can breathe if I exhale as much as I can, then inhale as much as I can, is still lower than it should be, and I have to take more breaths when I go for a walk.
Don’t fear, but be smart, Erik
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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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I’m going to share a brief update, and then give you some information on how my treatments work! In my private discussions with some of you, there is some curiosity about radiation, chemo, and the immunotherapy that I’m using to get well. So I thought I’d give some details on those things.
I also want to say before I start, that I’ve also learned from several of you that you are going through your own journeys with major health problems right now, including cancer. Know that I am praying for you! May God take care of you just as He has been taking care of me!
Update: My first infusion was October 3rd. The nurse told us that the worst days were 4-10 days after infusion and she was right! I was miserable and wiped out the following Tuesday!
I’m doing much better now, and enjoying the break. My next infusion is this week, on the 24th. I’m half way done with radiation treatments on my primary tumor, and my last radiation is on November 8th. So my last 2 infusions will happen after radiation is over. So this next one will likely be the worst, but the last 2 infusions are likely to be easier than the first 2!
My last infusion is on December 5th, and I’m looking forward to feeling much better in December. Hopefully by Christmas, I’ll basically be back to normal.
My pain is low enough now that I’ve started to work myself down from the opioids, which is lowering some of the negative side effects from an already low dose. The doctors are pleased at this news! I’m also able to eat more, so I’m working on gaining some weight.
We are so thankful for the support of friends and neighbors that we continue to get. Your prayers have been an important part of my progress, so keep it up!
Radiation: Radiation is a common cancer treatment because it’s less invasive than surgery, but it’s still quite effective at killing cancer cells. It works by damaging the DNA of cancer cells, leading to the self-destruction of the cells.
X-ray radiation is the most common. An emitter looks like a giant microscope and moves around the patient, firing hundreds of X-ray beams in sub-lethal doses. Only the tumor receives a lethal dose of X-rays. The CT scan measurements are exact and treatment plans are done by a physicist for each patient. In fact, a physicist and doctor need to be present and approve how the machine is lined up with the tumor every day before they start the radiation treatment!
An X-ray therapy instrument. The large piece with a glass pane right behind the patient’s head is a CT machine that does a mini-scan every time I go in, to make sure that my body is properly aligned with the map that they have. The gray plate on the right detects the x-rays from the CT machine after they go through the patient.
Inside the instrument, an electron beam is created by a cathode ray tube, much like the ones that used to be in the old tube televisions. The electron beam strikes a tungsten plate The electron beam is absorbed by the plate and transformed into X-rays that are emitted by the tungsten plate. These X-rays then pass through a lead aperture that shapes the beam into just the right configuration for the shape of the tumor at that angle. This aperture is made of lead “leaves” that actually move to shape the beam as the emitter moves around the patient. Yes, I can actually see the aperture changing shape as the emitter moves around me!
Inside the instrument, an electron beam (B) is created by a cathode ray tube (A), much like the ones that used to be in the old tube televisions. The electron beam strikes a tungsten plate (C). The electron beam is absorbed by the plate and transformed into X-rays (D) that are emitted by the tungsten plate.
These X-rays then pass through a lead aperture (E) that shapes the beam into just the right configuration (F) for the shape for the tumor at that angle. This aperture is made of lead “leaves” (G) that actually move to shape the beam as the emitter moves around the patient.
Yes, there is a risk that the X-rays themselves will cause a new cancer tumor to form, but the likelihood is that if one does, it will take many years for the new tumor to cause a problem, after the patient will have passed away from natural causes.
Proton beam radiation is much less common and much more expensive than X-ray treatment. Protons can more easily be concentrated on the tumor and are less likely to cause a new tumor. For these reasons, proton therapy is more commonly used on younger patients, to avoid the likelihood of producing a new tumor within the patient’s lifetime.
Chemotherapy: Normal human cells have many molecular checks to their growth, making sure the cells don’t get out of control. Cancer cells have mutations that turn off these checkpoints. This is why cancer cells grow rapidly and can become dangerous. Chemotherapy agents selectively kill cells that are growing rapidly. Since cancer cells are growing very rapidly, chemotherapy agents kill them first. Unfortunately, some normal cells in the body grow faster than others, like hair, gut, and blood cells. This is why patients can lose hair, experience nausea and digestive problems, and suffer from low blood cell counts, or even become immunocompromised.
The good news is, on balance, chemotherapy is usually very effective at killing cancer cells, and many people have been saved through the use of these agents.
As I said in my first 1st update, Next Generation Sequencing (NGS) testing can help doctors know if a patient will need to use certain chemotherapy agents. My tumors don’t happen to be particularly interesting in this regard, so I’m just getting a “normal” first try set of chemotherapy agents. NGS has definitely increased the survivability of cancer by helping chemotherapy work on the first try!
Immunotherapy: The PD-1 protein exists on the surface of certain T and B cells of the immune system. They work to inhibit the function of these cells in most conditions, making them tolerate “self” cells in the human body, helping to prevent autoimmunity. If a person has cancer, “turning off” these proteins can make these T and B cells no longer recognize cancer cells as “self”, and attack them! Immunotherapy agents like Keytruda inhibit the PD-1 protein, causing the immune system to attack some tumor types, like the cancer I have, non-small cell lung cancer.
Prayerrequests: I’m doing much better eating, and my goal is to maintain my weight through the next round of chemo, and to gain some after that. Pray that I will be able to eat enough calories for that! Thanks!
Don’t fear, but be smart! Erik
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