Immunotherapy, Infusion 2, 7/20

I'm sitting at the infusion center, waiting for my next treatment of immunotherapy. I feel awful.

This morning Dr. Robinson gently reminded me that I can decline treatment. His compassion was evident as he looked me in the eye and acknowledged both the pain I am living with and the uncertainty of the road ahead. I could be going through all of this with no measurable impact on the disease, just as chemotherapy ultimately had no effect.

I am now making decisions in a place where there are no guarantees, only hopes and possibilities. Today feels heavy.

As I sit in this infusion chair, I find myself asking, “Can my greatest pain become the place where God accomplishes His greatest work in and through me?”

Immunotherapy Update

It’s been two days since my first infusion, and thus far the side effects have been minimal - fatigue, dry mouth, muscle soreness.

These issues weren't bad enough to keep me from watching Miss Clara for a couple of hours today or to keep me from my morning walk at Wrightsville Beach.

On a positive note, I had been dealing with considerable pain and inflammation in my abdomen for the last two weeks, and both have substantially subsided since Monday’s infusion. Coincidence? Causation? Time will tell.

When plans change

Today feels really odd.

Based on the schedule for chemotherapy that was originally laid out, today should have been my last treatment - treatment 6 of 6. I suppose I expected to “ring the bell” today, though I must admit I wasn’t looking forward to that because I knew that finishing 6 cycles of Carbo Taxol wouldn’t be the end of the story.

But then plans changed when my ANC and my platelets went so low after the initial treatment. A three-week delay ensued. That pushed the entire schedule back, so today should have been treatment 5 of 6.

But then came the lab results and the CT scan that showed the cancer has progressed significantly since we started chemotherapy treatment in March. Words like “high histologic grade,” “progressive disease,” and “platinum resistant” now define my disease.

And so I am conflicted. The very thing I fought for seven years became the valley I willingly passed through, but I was extracted from this same valley without actually walking the full length of the path. I never envisioned this being the way the story would play out.

Part of me wishes I were at chemo this morning because that would mean it had been working, and part of me is so glad it’s over. I never believed it would work for me. That’s why I fought going this route for so long. And I was right. But it doesn’t feel good to be right in this case.

I continue to believe that there is more to be learned on this journey, and I am thankful for Biblical wisdom that reminds me today and each day, “The Lord directs the steps of the godly. He delights in every detail of their lives.” Psalm 37:23

None of the twists and turns on the journey have taken God by surprise.

Immunotherapy it is!

We got back from the World Cup yesterday afternoon and shortly thereafter I had a telehealth visit with Dr. Robinson. We talked about moving forward with immunotherapy as Dr. Rossi is in favor, as well.

Today I had a telehealth visit with the Family Nurse Practitioner at Zimmer, and we went over some of the specifics of this treatment, including dates and times.

Each cycle of immunotherapy will be 6 weeks long. On Day One, I will receive two drugs - Nivolumab and Ipilimumab. On Days 15 and 28, I will receive only Nivolumab. Day One will last roughly three hours. Days 15 & 28 will last roughly an hour to an hour and a half. We did not discuss how many cycles, but so far, we have two and a half rounds on the calendar. That will take us into mid-September. As I learned during chemo, dates are subject to change based on my body’s response to this treatment.

I am finding that a common misconception around immunotherapy is that the side effects will somehow be less or “better” than those from chemotherapy. That is not true. Immunotherapy carries its own risks, and they are substantial. Therefore, during today’s visit we talked about the risks to my thyroid health, my pulmonary health, and my digestive health. I was also told to keep Zofran on hand as nausea is a real possibility, as is a rash and a fever. My thyroid function will be checked every six weeks.

During discussion, I noted that I already have scheduling conflicts in August and September with treatments Novant scheduled, and I was told that I can “live my life” and dates can be adjusted as necessary (i.e. bumped back a week to accommodate travel).

The big news from the call? Insurance has already approved this treatment! Both Dr. Rossi and Dr. Robinson had been cautiously optimistic about the ability to get approval, so to get it within 24 hours seems like a big win. It helps that this is my 3rd line of treatment, my cancer is platinum resistant, I have high grade histologies, and my disease is termed “non-curative.” The goal of this therapy is palliative.

I’m looking forward to starting treatment on July 6. My port lab is scheduled for 10 am, I should see Dr. Robinson at 11 am, and the infusion should start about 11:30 am.

Thanks for taking the time to read this far. I included quite a few details you’re free to research on your own. I appreciate all of you who take the time to read updates and give me space to process without asking too many questions.

Also, your prayers mean everything!

Immunotherapy?

I had a really good chat with Dr. Rossi yesterday during our telehealth visit. She concurred with Dr. Robinson that chemotherapy was not having the desired effect and that we need to explore other options.

Though we talked about three possible therapies for the days ahead, we both agreed that immunotherapy would be the best option given my current situation and lifestyle. The one issue with immunotherapy is that it is expensive and often denied by insurance companies. Dr. Rossi has not yet used immunotherapy to treat a patient with GCT, but taking all factors into consideration, she feels it’s worth a shot with me.

Dr. Rossi does plan to consult with Dr. Hillman at UCSD, just to see if there’s anything he might suggest that we have not thought of at this point.

Please pray that we can get insurance approval and move forward with this plan if it truly is my best option.

I am incredibly thankful for access to good medical care and a team of health care professionals who are so willing to spend time considering what is best for me.

I know how the story ends

Sometimes it feels like everyone is sad except me. I have seen that sadness in the faces of friends and family. I have seen that sadness on the face of health care workers. I have seen on the faces of random strangers when they hear about my story.

Health care professionals deal with these issues every day - the sad realities of life that sometimes mean there is no cure, no treatment, no answer.

I recently said to my health team, “We all know how this story is going to end. We just don’t know how it’s going to look on the way there.”

But the truth is, the story doesn’t end here on earth. It will end with Heaven and communion with the Father forever. Yes, I know how the story ends, but it doesn’t end with the grave.