Had another CT scan completed on November 14th and consultation with my oncologist on November 17th. As a result, I think it’s now appropriate to put out another update. If you recall, the scan completed in August did not look so good. Due to lack of treatment, the cancer was enlarging and growing again. Even though the opdivo/yervoy treatment that I had gotten in the past negatively affected some of my internal organs, that same treatment was initiated once again. Standard operating procedure is for 4 treatments over a period of 12 weeks. I received two treatments before my liver enzymes began to spike. As a result, the treatment was stopped and I started taking steroids to get the enzymes back in line. In addition, another scan was ordered that took place on November 14th to see where things stood. The two treatments that I had since September 1st seemed to be very effective on cancer growth in my airways and stabilized the tumor / thrombus growth in my heart. However, my liver has now taken center stage. New growth on the healthy side of my liver was observed. Since it appears that the opdivo/yervoy treatment is not containing the cancer growth on my liver and is causing enzymes to spike, it is not an option to continue this treatment, at least for now. The next step being discussed is to bring me in for a Y-90 procedure (Google it). Step 1 is to meet the radiologist that will perform the procedure to determine if I am even a candidate. That meeting has not yet been set. As long as my Amazon fishing trip remains intact and I get to hold my new grandson (courtesy of Caitlin and Ryan) in February, I say let’s get er done! Proverbs 3:5-6 Trust 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.
I’ve learned that a cancer patients’ life is living scan to scan. What I mean is a PET or CT is done and treatment is prescribed based on the report from the scan. For the most part, the effectiveness of the treatment is not known until the next scan. I tell you this so that you understand why updates from me are not more frequent. That being said, I did have a CT scan completed August 12 and my oncologist appointment was August 16 to review the results of the scan. In summary, the report said things are getting worse.
Lungs: Existing nodes are getting larger and new ones have popped up.
Heart: The thrombus is getting larger.
Liver: The tumor is getting larger and the other side of my liver (healthy side) is showing signs of cancer activity.
Airway to lungs: this was the only good news. It appears the radiation treatment has been effective to the point where they are considering additional radiation treatment.
Strangely, despite this news, I feel great and remain active. The strategy going forward is to stop the chemo pills since they have proved to be ineffective and begin the infusion therapy once again with the same drugs (Opdivo and Yervoy) that I started with. As a reminder, these are the drugs that have affected other organs in my body and turned me into a diabetic. However, my doctor is running out of tools. At the same time, he has recommended that I go to Roswell cancer center in Buffalo, NY to see if I qualify for phase 1 clinical trials. Phase 1 is newly developed drugs/procedures that are experimental and have not yet been approved. Basically, “guinea pig” type stuff. If this next round of treatment proves to be ineffective or damaging, then we are into “Hail Mary” type stuff. Infusion therapy and my first appointment in Buffalo should take place before the end of this month. I’m staying strong with a good attitude and looking forward to the Lindsey/Travis wedding next month and an Amazon fishing trip in January!! Psalm 73:26 – My flesh and heart may fail, but God is the strength of my heart and my portion forever.
I didn’t expect to be putting out another update so soon but things have been moving fast so I needed to provide an update before I lose track of what is going on. Quick summary: The EBUS taken on March 9 found malignant tumor growth in my air ways. As a result, treatment was switched from immunotherapy to chemotherapy pills on March 29. The next day, I left for Cayman Islands for work. A couple of days later, the pills showed their ugliness. Not to bore you with the gory details but let’s just say it wasn’t pretty. Of all the potential sides effects described to me that could happen with taking the pills, I think I got them all. I returned to Syracuse on April 9 after being wheelchaired through all the airports. (tip – a wheelchair and global entry will save you about 2 hours in getting through customs/immigration!). Of course, I was told to stop taking the chemo pills. I was in the hospital April 12 – 15 due to all the side effects of the pills. I am back home now and have ejected from my job in Cayman. Since then, I had 6 treatments of radiation from April 19-26, a PET scan on April 26, a CT scan on May 3 and then an appointment with my oncologist on May 5 to have it all explained and plot the way forward. The PET and CT scan showed pretty much the same as in the past indicating not much change. The radiation proved to be effective as it has cleared my airways to some degree, so I’m not as fatigued as in days past. The plan going forward is to try a different type of chemo pill in small doses to start with to see how my body reacts. But as of today, I feel better than I have in a long time. So, as a result, a trip to Nashville in mid-May, a bone fishing trip at the end of May, a blue fin tuna fishing trip in September and, most importantly, a wedding in Maine in mid-September are all still a GO! John 16:33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”
The EBUS procedure mentioned in my last report was completed on March 9, 2022, with a follow up meeting with my Oncologist on March 29, 2022. The results were not what we had hoped for. The speculation was that the lymph nodes in my airways were aggravated due to some type of infection. As it turns out, the spots on the scans were identified as malignant cancer growth. As a result, the immunotherapy treatment I have been receiving every 3 weeks has been stopped and I am now on chemotherapy pills that I take twice per day. The tumor on my liver and the thrombus to my heart continues to remain stable. The plan is to keep taking the pills for 2 or 3 months and then have another PET scan to check the effectiveness of the new treatment. Isaiah 43:2 when you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned. The flames will not set you ablaze.
The CAT scan indicated in my December 29th, 2021, report took place on January 24, 2022. The result was not as squeaky clean as what we had hoped. The lymph nodes in my chest continue to be aggravated for some reason or another. The current thought is that it is still not cancer related, but, to be sure, my oncologist is scheduling me for an EBUS procedure. This should take place sometime this month. The link below describes this procedure. In the below writeup, they compare it to a colonoscopy. I just hope they use a different instrument. Psalm 55:22 Cast your cares on the Lord and he will sustain you; he will never let the righteous be shaken
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 12:9 But 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 3:5 Trust 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 29:11 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.