Feb 28, 2021

Before the update, thought an executive summary recap would be in order:

  • April 2019 – Diagnosed with Primary Clear Cell Variant Hepatocellular Carcinoma – Stage 4 liver cancer with a tumor thrombus extending from the tumor into the right atrium of the heart in the inferior vena cava with multiple metastatic disease in both lungs.
  • May 2019 – Began immunotherapy treatment with drugs called Opdivo and Yervoy.  In addition, 1 week of radiation treatment to attempt to shrink the thrombus
  • Jan 2020 – Became a type 1 diabetic for life due to side effects of immunotherapy
  • March 2020 – Heart attack
  • April 2020 – stopped immunotherapy due to side effects
  • Nov 2020 – PET scan showed that the tumor was growing again.  Therapy resumed but with different drugs called Tecentriq and Avastin.

So now moving forward………My last PET scan took place Feb 24, 2021.  I was concerned because this was the first PET scan since starting the new drugs in Nov 2020.  I was having no side effects and could the new treatment actually reverse the growth?  The results of the PET scan were really good!  The tumor growth, the intensity, and the lesions in my lungs have all diminished!  As a result, the treatment will continue without change and all of my cancer history is being sent to Sloan-Kettering for evaluation, once again, to determine if I am a candidate for surgery to remove the thrombus and a good chunk of the tumor.  It will be several weeks before I hear back from Sloan-Kettering and if they think surgery is the best option, it will be no less than 4 months before the procedure would take place.  So, until further notice, I will try to love life, family, friends, fishing, and God!    Jeremiah 29:11  For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.

Nov 30, 2020

The PET scan referred to in my report in October did take place. Unfortunately, the results were not what we had hoped for.  It appears the tumor on my liver is on the move again. The tumor has begun to grow, has become a little more intense, and has begun to creep over into the healthy side of my liver. The reaction to this is that I will begin immunotherapy, once again, starting today. Because of the side effects that occurred during my previous treatments, we will be switching drugs to Tecentriq and Avastin. Treatment will be every three weeks with blood work on a weekly basis because the potential side effects of these new drugs are similar to the previous ones.  The goal of this treatment is to once again stop the growth of the tumor and return it to a stable condition.  Romans 8:18 For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.

October 19, 2020

My last update was in July and referred to a possible surgery to remove the tumor on my liver and the thrombosis that extends into my heart.  To pursue that option, all of my charts, test results, scan info, etc. was sent to Sloan-Kettering in NYC for evaluation.  Their reply was that I am not a candidate for the surgery due to the fact that my cancer has metastasized to other parts of my body (lungs, heart).  The thought is that even if the tumor was successfully removed, it would not necessarily prolong my life due to the cancer in other areas of my body.  So the strategy for now, at least, is to simply keep on living.  Immunotherapy is on hold due to the negative effect it had had on my kidneys, liver, and pancreas.  However, my cancer growth has remained stable.  As long as it stays that way no other treatment will be initiated.  Another PET scan is now scheduled for end of November to check on the tumor growth and/or intensity.  If nothing has changed for the worse, I simply plan to keep on living! Proverbs 3:5-6Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths.

July 31, 2020

Still hangin’ in there!

As stated in my last report that “no news would be good news.” Well, it appears that has turned out to be the case. In May, an MRI was completed. The results showed that the tumor had actually decreased in size and the thrombosis to my heart remains stable along with the lesions in my lungs. All of this in spite of the fact that the immunotherapy treatment had been discontinued. I was very much concerned that the lack of treatment would allow the cancer to start growing again. On July 27, a PET scan was completed that shows the intensity within the tumor. This also was good news. Of course the cancer cells are still present but no growth was observed in terms of size and/or intensity. As a result, the oncologist has now recommended that Jodell and I go meet with a surgical team at Sloan-Kettering in New York City to discuss the pros and cons of having the tumor surgically removed. It is a possibility that, after their review, the doctors decide that surgery is too risky and not an option. I was told to wait for a call from someone at Sloan-Kettering to start this ball in motion. Until we have that discussion, I can’t speculate when this surgery, if possible, would take place. Stay tuned as this drama unfolds. I just hope it does not affect any fall fishing trips!  🙂  James 1:2-3 Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.

April 22, 2020

One year ago this month, I was diagnosed with stage 4 liver cancer.  Stage 4 means the cancer originated in one place (my liver) and has metastasized to other areas in my body.  I have lesions in my lungs and a thrombosis (tumor and blood clotting) that extends from the tumor on my liver, up my inferior vena cava and into my heart.  As Bill Murray in Caddy Shack would say…”so, I got that going for me”.  Obviously it has been an intense year with the most intense being the first month (April 2019).  These are a few of the “high” lights:

  • After the diagnosis and the biopsy I came close to internally bleeding to death
  • I was told if this had not been caught, I would have died by June or July of 2019
  • Once I was stable and the treatment began, I was told that I had, optimistically, 2 to 3 years to live
  • I would never be able to say that I was cancer free
  • The medication used for treatment turned me into a type 1 diabetic for the rest of my life
  • And, just for good measure, I had a heart attack earlier this month.

However, not all is doom and gloom.  There is some sunshine to be had:

  • The heart attack resulted in a couple of more stents and my heart should now be tuned up and, hopefully, ready for another 60 years!
  • The treatment has been successful in treating the cancer.  The thrombosis and tumor has remained about the same size but the lesions in my lungs have gotten smaller!
  • April 2019 was no fun but beyond that I have not felt much ill effect from the disease and/or the treatment.  I remain active with my “honey-do’s” around the house and even sneak out to go fishing every now and then.
  • When I last asked my oncologist for an update on my projected life span, He laughingly said…I don’t know!  You are now into unchartered waters!  He calls me the unicorn as none of the medical staff expected this type of success!
  • In spite of his comment early on about never becoming cancer free, he now says he can map out a way to become cancer free.  He acknowledges it is a long shot but it’s a shot.

So the road ahead is as follows…I won’t be getting anymore of the immunotherapy treatment due to the side effects I have encountered unless something changes. This will determine if my body’s immune system, on its own, has the upper hand and will continue to diminish the size of all the cancer tissue.  I will be scanned 2 or 3 times over the summer to see what is going on with the untreated cancer.  (I just hope we are not taking our foot off the cancers neck and letting it up off the mat!)  If all goes like we hope, the cancer will continue to dwindle and at some point early fall, surgically remove the tumor and the thrombosis and let the lesions in my lungs disappear at some point.  As I mentioned above, this is a long shot and the game plan is subject to change depending on how things develop.

So from this point forward (at least until fall), no news is good news.  Don’t get restless if you haven’t seen an update in a while.  There won’t be a need for an update report if things go per plan.  James 1:12 Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him.

March 22, 2020

As mentioned in my last update, I was waiting for the new plan of attack going forward since diabetes is now a part of the equation.  I do have that strategy now but hang on for a second while I explain the latest bump in the road.  I had a heart attack Friday and am now typing this update from my recovery bed in the hospital.  Had a stent installed in my right coronary artery and was put on notice that I would need to come back in a week or 2 to install another in my LAD (widow maker) as it is 70% blocked.  So all the spinning plates symbolize liver tumor, lung cancer, diabetes, thrombosis to my heart, and heart attack / stents.  Now for a bit of good news:  A recent PET scan showed that the spots in my lungs are decreasing in size and the tumor on my liver is the same size or maybe a little smaller.  So the plan to keep all the plates spinning is to hold off on the immunotherapy and not treat the cancer at all for now and attend to the heart issues.  Hopefully the tumor and lung lesions will continue to decrease in size or at least remain stable.  Best case would be to have the cancer remain stable or smaller over the summer and, if every thing lines up correctly, cut the tumor out along with the thrombosis sometime towards the end of year.  The reasons for waiting this long is to allow my heart stents and arteries to heal and let the cancer show that it is not growing.  This is a very optimistic plan but the best option at this time.  Any unknowns that pop up along the way will be addressed and, of course, could change the strategy. 2 Corinthians 12:9 –   Each time he said, “My grace is all you need. My power works best in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me.

Jan 19, 2020 Update

As Jodell, myself, and a number of doctors were discussing the pros and cons of going through a heart surgery procedure to remove the thrombus in my inferior vena cava, I had another situation pop up.  Early last week my mouth was extremely dry, I had lost 11 pounds over a one-week period, my eyes were dry and I became lethargic.  I called Jodell to explain, she called the doctors soon thereafter I was in the emergency room. My blood sugar level was 635. Normal range is between 70 and 140. All the medical care professionals immediately went into action and infused me with insulin and kept me in the hospital for 3 days to get the dosage dialed in. Turns out the Opdivo drug that I have been receiving bi-weekly for my immunotherapy has attacked my pancreas and left it with no ability to produce the required insulin. In the past, the cancer drug has attacked my kidneys, liver, and adrenal glands. All of those conditions were treated and everything returned to normal and I was put back on my normal treatment plan. Unfortunately, in this case, the doctors don’t believe that my body will be able to produce insulin forevermore. The oncologist says no more Opdivo for me which makes me wonder what the new plan will be (TBD).  So from now on, I am officially a type 1 diabetic.  As a result, it looks like I will be eliminating major food group from my diet as shown in the above picture.  What’s a little diabetes compared to stage 4 liver cancer??? Ain’t nuttin’ but a thang!  I say bring on the next challenge (or not)! Isaiah 38:16 (NLT) Lord, your discipline is good, for it leads to life and health.  You restore my health and allow me to live!

Dec 3, 2019 Update

Today was the day of that all-important PET scan. Shortly thereafter I met with the oncologist to get the results.  After everything was explained to me, I had the feeling similar to watching a football game that ends in a tie. Not much to celebrate but then again, nothing to be upset about. In other words, everything was about the same. The tumor on my liver is about the same size as it was at my last PET scan.  Some of the lesions in my lungs have gotten smaller but others have gotten larger.  The oncologist suspects that the larger ones are just inflamed from the treatment. The thrombosis that has grown up into my heart remains unchanged.  So even though I described this as a tie game, a doctor friend of mine said that stopping an aggressive growing cancer like this is a victory and he would take that every day of the week!  So I’m going to change my mind and call it a win!

Since the tumor on the liver and the lesions in the lungs have stabilized a little more focus will be directed towards the thrombosis in the inferior vena cava extending into my heart. We have a meeting scheduled with another doctor on December 19 to discuss options which could include doing nothing, surgery to remove it, or something in between. There are risks associated with every option but worth discussing.  One thing is for certain…nothing is going to happen until I get to hold my grandson around Dec 27!!  So for now the every other week treatment will continue as is until something changes or someone has a better idea. 1 Thessalonians 5:16-18 Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus.

10-4-19

I did not intend to put out another update until the all-important PET scan was performed in November unless something out of the ordinary happened. However, the natives are restless.  I’m getting several inquiries as to what’s going on and when is the next update, etc. is so here is the latest and greatest.

I continue to get the immunotherapy treatment every other week. The aftereffects of the treatment are mostly non-consequential so far. My blood work numbers are pretty much normal, however, I’m still taking steroids to keep my liver and kidney enzymes under control. The doctor is weaning me off of those because the steroids make the immunotherapy treatment somewhat less than 100% effective. Hopefully in about 3 to 4 weeks I will no longer be taking the steroids and the enzymes will remain as they should.

I did have a CAT scan done on September 27 and got the results the following Tuesday and explained to me by the oncologist. He said that the tumor has stabilized (no change in size) and some of the lesions in my lungs have gotten smaller but others have gotten larger. I hear that as a net “no change”.   The CAT scan indicates size only, not the intensity of the activity of the cancer cells with in the tumor.   That is what the PET scan will show.

In summary, the doctor told me that I would be perfectly normal if it wasn’t for the tumor. My response was that sounds like saying that the Titanic is a perfectly good ship except for the big hole in the side of the boat. He said “yes, pretty much like that.” As you can tell he and I have become good friends since April.

So going forward, the treatment regiment will remain the same and we shall see what the PET scan has to show in late November.  So the game plan is: steady as she goes and react according to changes, if changes occur. To be extreme to make a point: I suppose one scenario would be to continue treatments every other week for the next 30 years as long as everything remains stabilized which explains the picture at the top of this update.

As far as quality of life…. We have been doing a small finish out project at our home. I try to do much of the work myself because I like to and keeps me busy (installing laminate floors, installing doors and trim, painting, etc.) In addition, I try to keep up on my honey-do list whenever the lovely Miss Jodell snaps her fingers. I’m also entertaining the idea of securing some type of construction consulting work here in the Skaneateles area.  Currently, I am in Tampa hanging out with Ryan and we intend to go fishing in the Everglades on Tuesday. So my point is I’m very grateful to be as active as I am and, at the same time, fight this life threatening disease.

My doctor has told me in the past that I will never be able to say that I’m cancer free but he apparently does not know the power of my God.

Thank you for all the prayers from the Saints and keep them coming!

Romans 12:12 

Rejoice in hope, be patient in tribulation, be constant in prayer

August 21, 2019

Consider this a continuation of my last post. The last post was not definitive as to which way things were headed…..Either better or worse. If you recall, my kidney numbers (Creatinine) were extremely high. To combat this, I was given a lot of hydration. This caused other issues as described in my last post. The idea was to flush my kidneys to get the creatinine numbers in line. So in addition to the hydration they gave me medication to make me go to the bathroom. Once that treatment was completed on Friday, Jodell and I hit the road to go to Burlington, Vermont. It took two restrooms stops and a cornfield to get there but we made it! Now the good news: I was back in the cancer center yesterday for more blood work and a plan of action based on the numbers. Everything is pretty much in line except that the kidney numbers are still abnormally high but headed in the right direction. So the doctor put me in the infusion room to reinstate immunotherapy treatment. In addition, he put me on steroids attempting to keep the liver and kidney numbers where they need to be. Anyway, I see this to be a good thing because were now back on track in dealing with the cancer!