I had another PET scan completed on December 10 so I figured it was time for another quick update. The results of the scan were a little suspect. Although the tumor on my liver has remained about the same size, several lymph nodes in my chest area appeared to be enlarged or inflamed. Of course, this caused some concern until I met a few days later with my Doc to get the interpretation. He said he doubts that the active lymph nodes had anything to do with the cancer since my tumor appeared “remarkably stable.” He prescribed a z-pak to treat, what he believes to be an infection, and scheduled a CAT scan for me at the end of January.
All that being said…I feel fine. Same as I felt before I was diagnosed. So much so that I have accepted a position to manage a construction project in the Cayman Islands. I will work from my home office in New York and go to the Grand Cayman on an as needed basis. Hopefully, the Cayman sun rays will eradicate the tumor once and for all! Jeremiah 17:14 Heal me, Lord, and I will be healed; save me and I will be saved, for you are the one I praise.
Another day, another heart attack. On Tues morning July 6, I was putting things in order after a fun filled July 4th weekend. Got done, sat down in a chair in the garage and even started to doze off. Then the pain in the center of my chest began. Soon thereafter, I called 911 and was rushed to the hospital, directly into the Cath Lab. The blockage was cleared and another stent was placed (I have 6 now) and I was then moved to my hospital room. All this occurred over a 3 hour time period. Amazing! However, this event was different than past episodes. Prior to Tuesday, blockage was due to typical plaque buildup associated with high cholesterol. This blockage had my LAD (Left anterior descending artery) 100% blocked and was from blood clots caused by the cancer tumor or past stents or other possibilities. I am home now recovering but not without implications this time. The heart muscle was damaged to some degree as measured by the EF (ejection fraction – The percentage of blood leaving your heart each time it squeezes). 60-65 is normal. Mine is now 30-35. However, that should improve as my heart heals over time. I know all this sounds disturbing but don’t fret. My planned Alaska fishing trip in August is still a “GO”! 2 Corinthians 12:9But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.
The telemed conversation with the oncologist/surgeon at Sloan Kettering in New York City took place on June 23. The purpose of this call was to discuss if surgery would be a benefit. The call was short because the determination was that any kind of surgery is not an option. In short, the risks far outweigh any potential benefits. My cancer is too far advanced so any kind of procedure to remove a portion or all of the tumor would endanger organs and blood vessels. So going forward, the strategy is to continue the every three weeks of immunotherapy until something changes. I am not disappointed with this news. The thought of going through a risky surgery was worrisome and the immunotherapy is currently working to control the tumor growth. So now that that has been determined, it’s time to move forward in serving God, loving family and friends, and fishing harder and more often! A cheerful heart is good medicine, but a crushed spirit dries up the bones. – Proverbs 17:22
We were in Nashville the day after Easter Sunday and scheduled to fly back to Syracuse. That morning I experienced some chest “discomfort” but elected not to say anything until we were in the airplane on our way back home. Jodell was a tad bit “displeased” with that decision, to say the least. Anyway, the next day I called my cardiologist’s office. They set me up for a nuclear stress test later that week. This test showed some irregularities so I was then scheduled for another cardiac Cath procedure. This test showed that my right coronary artery (RCA) was 100 % blocked. However, blood flow to feed the heart muscle had rerouted through collateral arteries in the heart that is now functioning as a natural bypass around the clogged RCA. As a result, no medical corrections were needed and the Dr. sent me home with a scheduled follow up in November. Of course, my oncologist got this information and elected to suspend my immunotherapy treatment until another PET scan could be completed. Apparently, the way the immunotherapy drugs work is to constrict the blood vessels in the tumor, starving the tumor of the blood it needs to grow. My Oncologist was concerned that the medication could be affecting my heart in much the same way. The PET scan took place on May 11 and the results were very good. The tumor continues to decrease in size and intensity, the lesions in my lungs are “inactive”, and the immunotherapy did not cause the heart issue. The chest discomfort was not identified. It may not have even been heart related. Good thing I did not press the panic button when we were in Nashville. ;-). As a result, I am now back on the every 3 week immunotherapy regiment. In addition, the latest PET scan information was sent to Sloan-Kettering to determine if there is a surgery option that would be beneficial. Proverbs 3:5Trust in the Lord with all your heart, and do not lean on your own understanding.
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 29:11For 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.
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.
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.
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 1:2-3Consider 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.
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 1:12Blessed 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.
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.