Caring Bridge: 2/11/24

I am sorry it took so long to get back to you.  As I have mentioned in other posts, I do not like to make a new post until I have accurate details and information to share.  I still do not have a complete picture or plan in place, but I feel I have enough for an update.

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In my last post, I shared that I am currently taking part in a Phase 1 Trial at Sarah Cannon in Nashville, Tennessee because my first three different chemotherapy and targeted treatments eventually failed to shrink or hold existing tumors stable.  These treatments not only stopped working for me but unfortunately, some of the tumors continued to grow in size.

As of February 6th, I had received two of the Phase 1 Trial treatments at Sarah Cannon and was heading to Nashville, with great hope, for a Bone Scan and a CT Scan to determine if the trial treatment was working and whether or not I should continue.

I hoped to receive my results on February 7th and to post a very short message that would have said something simple, such as, “It is working!”  But as you can tell from the length of this post, that wasn’t the case.

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As previously stated, the plan was to go for the scans on Tuesday and then go for my appointment on Wednesday to receive my results and determine the next steps: either continue with treatment or make a new treatment plan.

I was scanned on Tuesday and went for my results on Wednesday as planned.  My appointment required me to be there by 7:00 am.  The thought was to hear the results of the scans with the hopes it was working so that I could receive my third treatment in the trial that same day.  Once I arrived I was told that the CT results were not back yet, so my cousin and I were placed in a room to wait. 

After several hours had passed, they decided to take my blood so that I could receive treatment if the scans came back in my favor.  Once the bloodwork came back from the lab, I was told one of my three liver enzymes was too high to receive treatment this visit.  My AST result was 200 two weeks ago, 180 one week ago, and 170 this week.  It was promising that it was dropping each week, but to qualify for treatment it had to be 150 or below, and I just wasn’t there.  I was disappointed.  The thought of not getting treatment was quite worrisome, but I remained hopeful that my body just needed a break and my AST would continue to drop.  My other liver enzymes were within range, so I hoped this was just a side effect of the drug and not my liver struggling to perform.  I was also still waiting for the scan results and praying and hoping they would show the treatment was working and would be worth the wait, so we continued to do just that . . . wait.

As each hour passed, my cousin and I sat in anticipation balancing on the edge of hope and fear.  The combination of those two emotions resulted in intense anxiety.  Every time a research nurse, nurse practitioner, or oncologist passed our open door frame, we held our breath, but not one of them was headed to our room to share my scan results.

Finally, after sitting in our room for a total of eight hours and still no word, I tracked down a nurse practitioner.  She stated the hospital had yet to read the scan, and it would probably be best to head back to the hotel.  They promised to call tomorrow as soon as they received word.

The next day we checked in and still no word on the scans.  Before my 1:30 appointment with a gallbladder surgeon, we went back to Sarah Cannon to make sure we were still on someone’s radar, and we were told the results were still not available.

We finally decided to drive back to Cincinnati and were told they would call us with the results.  The phone rang a few hours into our trip and we were informed by a nurse practitioner that the scan showed mixed results.  My heart sank.  Mixed results in this case meant that some tumors were stable, one shrunk, and others showed growth. 

• My lung lesions had increased.  
• • Lungs Right Mid: Previous: 1.6cm; Recent: 2 cm.

• Liver lesions were varied - some bigger and some smaller.   
• • Liver Right Lobe Previous: 2.8cm; Recent 2.5cm.  
  • Liver Left Lobe Previous: 3.8cm; Recent: 4.9cm.

They said they would have to check with my oncologist on Monday, as she was no longer in the office, but most likely I would be taken off the trial and be sent to Cincinnati with the recommendation of starting a drug called Havalen.  Halaven is not a targeted treatment that targets the cancer cells themselves, but an “old school” chemotherapy with a list of potential side effects–some mild and some significant.  At that moment I couldn’t shake the feeling that the sand in the hourglass that is my life was now dropping at a much faster rate.

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After a night of racing thoughts, punctuated by short naps due to pure physical and emotional exhaustion, I woke up to a phone call from Sarah Cannon.  The phone call provided me with the following information:

The Nurse Practitioner (NP), decided to talk to another oncologist to get her thoughts on the scans since my oncologist would not be back until Monday. 

This oncologist gave the opinion that even though there is some growth, considering everything, she would determine that I'm stable.  The growth in the lung tumors was not worrisome to her.  She stated looking at the targeted liver tumors they are using to determine trial success, growth would most likely not disqualify me from the trial drug at this time.  

However, it’s ultimately up to my oncologist to make the final call.  The other oncologist said in her opinion, it's perfectly reasonable to treat again and scan sooner–after one dose for example.

In general, I'm told, some trial drugs show increased tumor activity at first because they're doing their thing. Then they potentially can become stable, and then begin to shrink.  

Ultimately, I need my oncologist to make the final determination and my AST to drop from 170 to 150 to move forward.  I will be rechecking my levels after work on Monday in Cincinnati. 

So now we wait, hope Dr. Hamilton approves, and hope my body’s blood levels cooperate.

I am well aware that the odds of beating this are statistically against me, and this cancer may very well have the power to steal my hope at times, but it does not have the power to steal my smile, my joy, and my laughter for as long as I am here with all of you, my dear family and friends.  I am beyond blessed to have all of you in my corner.

Onward!