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Cancer Update 27: A Longer Road

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This is a cancer update. 

It’s been an eventful few weeks since my last post, with some roller coaster ups and downs along the way.  On May 1st, when I wrote it, I was feeling particularly good, and continued to feel that way for a few weeks.  I had radiation treatments in the middle of April and have also been eating better with my new program, so some of this improvement is likely due to that.  I had a bit of a downturn in mid-May, and was feeling more pain. 

On May 20th, I got a port installed in my chest.  It goes under the skin and is a little creepy.  The medical providers use it to draw blood and to give me the chemo agents I’ll be using next.  The very next day was my first chemo treatment of my new regimen.  My first chemo regimens were relatively easy, the only real side effect being some sleepiness the week after chemo.  My oncologist told me this regimen was going to be more aggressive and harder on me.  He was right.  On Tuesday after chemo, my mouth started being sore.  By Thursday, it was really sore, and it was hard to talk, eat, and even swallow.  This is probably because the cells inside your mouth, called epithelial cells, are fast growing and are probably attacked by the chemo drugs. Skin, stomach, and intestinal cells are also all epithelial cells, and all of these areas are prone to experiencing side effects from chemo agents.

Yes, I also shaved my head!  I was starting to lose hair in clumps, and instead of cleaning the hair off of everything, we decided to go “Mr. Clean”.  You can decide if I look like a weird hairless cat.

My friend Chris and I at lunch. My head is shaved here, but I don’t look that different from the front than before!

Last week, after my second chemo treatment, I started experiencing some neuropathy in my feet.  My doctor had warned me that this might be a side effect of the new regimen.  Whenever I walk, it feels like I’m walking on gravel.  It’s pretty uncomfortable, and I’m certainly hoping and praying that it isn’t permanent.

I had a PET scan on Tuesday. The good news is that the radiation treatments on the tumor near my spine worked well, and that tumor is now much reduced. 

The tumor near my spine is now much reduced.

But there’s some bad news too. Kind of a lot.  The tumor in my left lung is larger now, as is a tumor that has been very faint but is now prominent.

This small tumor has been very small and dim for almost a year. In the last 3 months, it became more prominent.

In addition, there is a brand new tumor in my right front torso area, again in a rib.  I’m not sure why these three tumors have grown so much in the past few months. 

Needless to say, this is a lot of discouraging news.  Yes, for reasons I’ve described before, I believe I’m going to live.  But the pathway continues to be dramatic.

As for prayers requests, please pray that my current tumors respond well to treatment.  Also pray that my neuropathy is not permanent.  Last, as I’ve said before, I believe that God is training me during this time.  Pray that I learn whatever He has for me to learn!  I’ve learned A LOT already, but apparently there’s more!   We believe that God will preserve my life, and that I have things to do after this is all over.  I would, however, enjoy it if the road was a little less bumpy.

Thanks again to all of you who have shown such wonderful support during this time!

Don’t fear, but be smart,
Erik

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Cancer Update 26: More Radiation and Chemo

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This is a cancer update.  I’ll give updates on the treatments I’ve done recently, what’s planned next, and the status of the GiveSendGo a friend set up last month.

Radiation: As I noted in the last update, I had a tumor in a rib close to the spine.  The position was a concern, because it was just a few millimeters from my spinal cord.  Happily, I was able to get radiation treatment for the tumor, and x-ray exposure to my spinal cord was minimal.  So that tumor is going away now, and I expect I won’t have any more trouble from it.  This is a big relief and I’m already experiencing a little less back pain.

Chemotherapy:  I will likely start up chemotherapy again next week.  Unfortunately, we’ll have to kick up the aggressiveness of the chemo again a little bit.  Unlike previous rounds, I will actually lose my hair this time.  So the next time you see me, I may look like one of those weird hairless cats. 

Weird hairless cat.

We’ll probably start chemo in the next week or two. 

Be Resilient program:  As discussed in the last update, I entered a program called Be Resilient.  The program does not claim to “cure cancer”, but it does help to optimize your body’s terrain in a way that will help your immune system fight on its own.  They drew some blood and did some extensive testing on reactions to foods and various other common chemicals like supplements and medications.  Since I have celiac disease, an autoimmune disease, I have several food sensitivities divided into severe, moderate, and mild categories. The program recommends I avoid all foods in the severe category for at least 6 months, foods in the moderate category for 3 months, and eat foods in the mild category no more than once or twice a week.  Unfortunately, I have a lot of things in my moderate category!  Dairy, apples, cocoa, several fishes, and several fruits are on this list.  I also need to avoid sugars of course, since they feed cancer.  Breakfasts are a particular problem, since I shouldn’t eat a lot of carbs, and I need to avoid egg whites, so I’m literally not sure what I’m going to eat for breakfast yet.  Maybe I can find a protein shake, without chocolate, that’s not too terrible!

And yes, it really hurts that cocoa is on the list!

On the bright side, I was at a friend’s restaurant recently, Pelly’s in Carlsbad, and had to get creative.  Instead of a fish taco, which I can’t eat because it has cod in it, I had a shrimp taco that was incredible!  My new favorite menu item at Pelly’s!

The program is also having a supplement made just for me to address some nutrient deficiencies that I have.  It will include things like Vitamin K1, Amino acids Methionine, and Valine, and Carnitine, a molecule that helps with energy production and muscle building.

GiveSendGo: My friend Annely put together a GiveSendGo for me to help pay for the program and with other treatments like Hyperbaric Oxygen, which helps in wound healing and is particularly good for after radiation treatment.  I really want to thank those of you who contributed to this fund.  We really appreciate it, and my membership in the Be Resilient program is now fully funded.  Several friends chose to give to us personally, so the amount given on GiveSendGo is actually a little less than we’ve received in total.  Thank you so much!

We will have another PET scan in mid June, after a few rounds of chemo. I’ll check back in then and let you know how things are going.

Don’t fear, but be smart!
Erik

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Cancer Update 23: Last Chemo?

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It’s been about 6 weeks since my last update.  There hasn’t been any big dramatic changes, but since some of you have been asking how I’m doing, I thought I’d do a brief update.

I had another round of chemo in January, but I’ve often had to postpone treatments because of low blood cell counts.  I’ve had 3 rounds of the new more aggressive regimen, and we met with our oncologist on Tuesday to discuss next steps. In light of our good results in December’s PET scan, we’ve decided to have one more round, maybe next week, before another PET scan in early March.  If the results in the next scan are good, this may be my last round of chemo, although we’ll probably continue with immunotherapy for a while. By late February, my blood cell numbers may be getting back to normal.

Meanwhile, my physical therapist has started another kind of therapy for my sore torso muscles that are making a big difference, so my back is feeling better than it has for a long time, which is obviously great news.

All this to say, we feel like we’ve been making some very nice progress lately.  Hopefully, I’ll be able be more normal soon, going to church, eating indoor in restaurants, things like that. I probably won’t post another update until after my PET scan in early March.

I want to sincerely thank you for all the prayers and support we’ve gotten over the last year and a half.  We’ve really felt blessed to have so many wonderful friends that have our back during this time.  Thank so much!

Lunch in the backyard with my friend Chris Banna.

Please continue to pray for wisdom as we navigate next steps, and for continued healing of course.

Don’t fear, but be smart!
Erik

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Cancer Update 22: New Progress

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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

Why I believe I will survive!

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Cancer Update 20: New Activity

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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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Cancer Update 19: September PET Scan Results

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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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Cancer Update 18: New Chemo and Radiation

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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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Cancer Update 17: Some sobering news

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Dear friends,

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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Cancer Update 12: Post Treatment PET Scan

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Friends,

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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Cancer Update 11: “Friday”

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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 muscles
This 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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