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Cancer Update 25: New Directions

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This is a cancer update.  First, I want to let you know what’s going on after my meetings with my oncologists and my next plans.  Next I’ll do a deep dive into the kinds of evidence that supports various medical treatments.  When you hear a doctor say “we don’t really have evidence for that”, what do they mean?

Update: My March 5th PET scan showed that while most of my tumors are completely gone, I have a few persistent tumors that will need to be addressed.  I have 2 prominent ones, and a few minor ones.  We met with my chemo oncologist and we agreed that the current approach isn’t quite working and we need a different approach.  We decided to get a biopsy on the lung tumor which is relatively accessible.  So just yesterday, we went to the hospital for a lung biopsy, performed by my pulmonologist. The procedure went well.  He’ll send off the biopsy for Next Generation Sequencing which will give us information on the genetics of the tumor.  This should give us good information about what chemo or immunotherapy treatments to use next. We’ll have that information back in a few weeks.

Then we spoke to my radiation oncologist just today.  He’s mostly concerned about the tumor near the spine.  The good news is that he thinks it’s far enough away from my spinal cord that he can treat it without doing any damage to my nervous system, which is great.  That will probably happen in about 3 weeks. We’ve had success with radiation in the past, and we’re encouraged that he can treat that area.

March 5th PET scan. A persistent tumor is near the rib, close to the mid-line. Our radiologist can still treat this tumor, which is good news!

Alternative treatments: Because we are eager to put this whole cancer thing behind us, we’ve decided to “give it both barrels” and do everything we can to end all of my tumors and move on with life. So in addition to the “traditional” medical means, we are also going to pursue some “alternative” measures. We learned about a program called “Be Resilient” from a friend.  This program doesn’t claim to “cure cancer” per se, but they do seek to learn why your body is a “good host” for cancer cells, and to optimize your body’s ability to fight back.  The first thing they will do is test my blood for over 400 biomarkers to see what my body chemistry is like. Then they’ll put together a plan for me to optimize my body chemistry.  Then I’ll work on the program for 8 months, keeping tabs on how I’m doing on the way.  We’ll also continue with the medical treatments recommended by our oncologists. Will it work?  Of course I don’t really know, but at this point I feel like I need to get serious and try everything I can. 

The program is not free!  As I’ve mentioned before, most of my medical care is being paid for by us, and reimbursed through a cost sharing program.  But our program does not reimburse for “alternative treatments”.  Our friend Annely has put together a Givesendgo page for me if you’d like to contribute.

We have been so grateful for all the support we’ve gotten from all of you over the past 2 years!  Please do not contribute to this fund if it will challenge you financially.  We are blessed to have lots of friends!

Please continue to pray for wisdom for us and our doctors as we go through this process, and of course for God’s healing!

Evidence:  This section is going to be a detailed discussion of the kinds of evidence that supports various scientific and medical findings.  Read on if you find that interesting, otherwise, you can skip the rest of this post.

You may have been in your doctor’s office and been discussing some new treatment you’ve heard about.  They may have said “there isn’t really any evidence to support that”, but you heard some pretty convincing stuff about it.  The reason for all this is that there are different levels of evidence that may be convincing or useful in some circumstances but not others. I thought I’d discuss this a little to clarify this, especially as it pertains to “alternative treatments”.  Here are some of the kinds of evidence we commonly deal with in the medical or scientific community.  You also run across some of these in every day life.

Anecdotal evidence:  This kind of evidence is basically a collection of stories people have from every day life.  Things like “My aunt tried a supplement and it really worked for her” or “I got the vaccine and started having ringing in my ears”.  This kind of evidence can and does often form the starting point for more rigorous studies, but by themselves, they have a lot of problems.  Private citizens often don’t have a firm understanding of cause and effect, and usually don’t take into account all the factors that may contribute to a result.  Like a joke study someone told me about in which a city determined that ice cream consumption at a local beach was correlated to shark attacks.  So what does this mean?  Does eating ice cream cause shark attacks?  Of course not.  Hot weather causes people to eat ice cream and also causes people to swim in the ocean.  A third factor causes both results.

But this is not to say that anecdotal evidence is worthless.  When a lot of people have similar stories, it can and does cause scientists to be interested in finding out what’s going on.  Anecdotal evidence, once properly understood, can lead to real scientific findings.

Many of the ads your see on TV or the internet contain testimonials and claims that basically amount to anecdotal evidence.  This is why we have to consider these kind of claims with caution.  Many of the supplements and much of nutritional advice we see are not supported by the rigorous evidence I will discuss below.  What they claim may be true, but we can’t know for sure just based on the evidence they present.

Case studies:  It’s pretty common for doctors or scientists to have an interesting case that they write up and publish in a journal.  These studies may include just 1 or a handful of patients.  This represents real scientific evidence, but since the sample numbers are so low, they are often ignored or not taken very seriously by the medical or scientific communities.  However, if enough of this evidence is published, they can trigger more rigorous studies.

Many of what we consider alternative treatments are based on anecdotal evidence or case studies.  There is evidence for them, but the evidence is not as rigorous as we may like.  This is why the medical community is very slow to promote these kinds of treatments.  Unfortunately, some very useful treatments may go under-utilized because no one wants to pay for more rigorous studies to be done.

Observational studies:  These studies are performed by collecting available data and trying to come up with a useful conclusion.  This method is often used when it’s considered unethical, too expensive, or too time consuming to collect new data.  Many papers regarding COVID represented this kind of data. 

These studies can often lead to useful conclusions, but because the researchers can’t control the kind of information they gather, it can be hard to sort out what connections are real, and what are the result of other factors.  A good example of this comes from COVID studies estimating the number of real cases early in the pandemic.  Researchers would collect information from hospitals about the number of patients who had COVID.  Then they would announce this as a percentage of the population with the disease. The problem is that the general public and the people who came to the hospital are 2 different groups.  The people who came to the hospital are “self selecting” as people who are more engaged with the health care system, have more access to the healthcare system, or just are more cautious and sensitive about their own symptoms. So they don’t represent all the other people who are less likely to go to the hospital.  So it was really hard during COVID to get an accurate assessment of COVID in the general population.  One study I saw tested all pregnant women who came to the hospital to deliver their babies, assuming that almost every pregnant women would go to the hospital to deliver.  They argued that this generated a more random sampling of the public than other studies.

Observational studies can be very useful, but because they can’t control all the conditions of the study, they can still lead to wrong or insufficient conclusions.  Because they are much less expensive to run than controlled trials, they care still commonly used in the medical community.

Large, controlled, double-blinded trials:  These are the gold standard of medical studies.  Researchers start by defining a problem, and then collecting a lot of patients and doctors to be involved in the study.  Great care is taken to select the right patients under the right set of conditions.  These studies often involve hundreds to thousands of patients.  Drug companies and regulators insist on every aspect of testing to be controlled.  A lab next door to mine had to monitor every individual section of a freezer to make sure all of the samples, drugs, and testing materials were at the proper temperature at all times!

These studies can be very time consuming, taking months, years, and even decades, and can be very expensive.  Unfortunately, many regulatory agencies will accept nothing less that this kind of study as proof of the effectiveness of a treatment.  So when your doctor says “there’s no evidence that this treatment will work”, he’s just saying that a large, controlled, double-blinded trial hasn’t been done yet!  And since many small companies can’t afford these studies, it can be very difficult for their treatment to be recognized as useful.

What does “double blinded” mean?  If a patient is enrolled in a trial for a new cancer trial, testing a new chemotherapy agent, they will be placed in a test group or a control group.  The test group is given the agent, while the control group is taken into the same medical setting, but just given a salt solution or other inert substance. This is done because the “placebo effect” is absolutely real.  Many people improve in their condition after receiving fake treatments.  For a new treatment to be considered useful, it has to show that it delivers more improvement than the fake treatment!

It’s important for the patients to not know what group they’re in for the conclusions to be valid. This is a single-blinded study.  It’s also true that researchers, even subconsciously, can fudge data in favor of the conclusion they expect.  So many don’t find the study useful unless the researcher are blinded as well.  How is this done?  When patients are enrolled, some researchers keep a list of patients and which group they are in.  Technicians will give the treatments and give the data to a second set of researchers who will analyze the data for which patients had the best results.  Finally, the test results will be compared to the list of patients and the test or control groups they were originally divided into.  This way, the researchers who analyzed the data don’t know who the test patients were until the very end of the study.  This way, the very “cleanest” information can be derived from the study.  Obviously, this can be a very complicated process and contributes to the high cost and complexity of these trials.

I hope you found that useful! 

Don’t fear, but be smart!
Erik

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Cancer Update 24: March PET Scan

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I had a new PET scan on March 5. Unfortunately, the results were not as we had hoped.  While most of my previous tumors are gone and remain undetectable, another appears to be growing, and a second appears to be new.  This means that my current cocktail of chemo agents is not working on some tumors.  We will meet with my oncologist this Thursday to discuss the next steps. 

As I have said before, we believe I will survive.  I discussed the reasons I believe this in a previous post.  As many of you know, finding new tumor activity this late in a cancer battle is usually not a good sign.  While I believe I will survive, we have no idea what form my healing will take.  As most of you know, we are Christians and believe that God can and does heal.  This result increases the likelihood that God will use miraculous means to heal me, and not just medical means.  Yes, this is how a scientist with charismatic leanings talks about miracles.

We don’t know what will happen in the next few weeks and months, but we suspect it won’t be “normal”.  I will assure you, however, that God has been taking care of us in the last year and half, medically, financially, and even emotionally.  He has been training us to trust Him.  He has been training us for this time. 

So please continue to pray.  I am experiencing more pain in recent weeks.  At least some of this is “good pain” because some damage nerves are healing, leading to some hypersensitivity as they re-awaken.  So pray for pain relief and also for peace as we face some uncertainty.

Don’t fear, but be smart,
Erik

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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 16: Improvement and Travel!

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A brief cancer update today!

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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Cancer Update 14: Progress from an Unexpected Source

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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!

Fear not, but be smart,
Erik

Cancer Update 13: Gradual Progress

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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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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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Severe Avian Influenza Case in Louisiana.

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Happy New Year!

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.

Don’t fear, but be smart!
Erik