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!

Just when we think we have plans in place . . .

Plans are made. Plans change. In Proverbs 16:9, the Bible says:

“We can make our plans, but the LORD determines our steps.”

The truth of that in regard to my health care became apparent this week when both my blood work and my CT scan showed continued progression of disease despite four rounds of chemotherapy. I met with Dr. Robinson and his PA yesterday, and it was decided that there is no valid reason to proceed with chemotherapy as it is not having the desired palliative effect.

What’s next? We are not yet certain. A number of options have been discussed. I will have a telehealth visit with Dr. Rossi on Monday and another appointment with Dr. Robinson on Thursday, June 25. I hope to have a plan in place by this time next week.

I recently did a genetic profile with the Target Cancer Foundation’s TRACK study, and we will likely choose one of the options they recommended. Dr. Robinson is willing to try an option that he has not used for GCT before. I appreciate both his compassion and willingness to think outside the box.

I love this quote, and I want it to define how I live in the days ahead:

“The function of man is to live, not to exist. I shall not waste my days in trying to prolong them. I shall use my time.”

— Jack London

Thank you to all of you who continue to pray and reach out to me. I know the prayers of the saints are what sustain me day by day and give me this deep peace that even I don’t comprehend.

Chemo. Round 2. Day 4. Appointment with Dr. Robinson.

Backstory. I recently asked Dr. Robinson for a CT scan because I have a lump in my lower abdomen that’s sizeable and has not gone away.

Labs and the CT. I had labs on Monday that indicated impaired liver function. I had the CT on Tuesday, and it indicated multiple sites of disease.

Today’s visit. I want to start out by saying I am so glad I am back in Wilmington for care. Dr. Robinson is pretty awesome, and it is so easy to pop over to Zimmer for appointments like this instead of driving all the way to Durham.

Monday’s lab indicated impaired liver function. Combined with the CT results, I thought Dr. Robinson would point to the cancerous nodules as the cause of that impaired function. Instead, he believes that the liver function impairment might be because of Taxol (one of my chemotherapy drugs), not the cancer. He has been leaning toward changing my chemo drugs anyway because Taxol is so harsh on the body and I have had platelet and ANC issues. If the decision is made to change my chemo regiment, we will likely choose Abraxane instead of Taxol.

He wants me to continue chemo, and he wants me to complete 6 rounds, if possible. The reason he had agreed to the CT at my request was because I have had a lump in my lower abdomen. The CT scan showed that is an enlarged lymph node, not a cancerous nodule, so he was confident that we're not in any great rush with making any changes to treatment at this point.

He wants me to have blood work and see him again May 11 with the goal being to have Round 3 of chemo on May 18.

I am going to Duke the afternoon of May 11 to check in with Dr. Rossi, and Dr. Robinson is aware of that. He also knows I have spoken with Dr. Hillman in San Diego. Dr. Hillman's opinion was to do at least 3 rounds of chemo before making any decisions, so this all tracks.

Dr. Robinson also said he had no problem with me traveling as planned the next two weeks. So, all in all this was a good and reassuring visit, and today he shared that he has other patients with recurrent GCT and has tried a variety of treatments with them. In 2023, that was not the case.

I came home to this amazing surprise from some dear friends. The card read in part: “My husband collects shark teeth, and he wanted you to have these. When he looks at them, he sees a creation of God’s that weathered harsh conditions and even though battered, survived. We hope these will be a symbol of God’s goodness, sovereignty, and love for you.”

How thankful I am for all of you, my kind friends, who continue to encourage me day-by-day.

Today is not that day

Am I on the downside to 55 years? Yes

Do I have active disease? Yes

Am I on Letrozole and Lupron? Yes

Am I facing a liver resection and debulking surgery December 10? Yes.

Did I just run a 10K with my best time in years? Yes

One day I won't be able to do this, but today is not that day.

The April 22, 2024 appointments

I had three appointments at Duke on April 22. Here’s a quick update.

My first appointment was with Dr. Rossi at 10:30 a.m. We had a great visit as we talked about the present - and the future. I’ll have a CT scan at my next visit.

Then I went to the lab at 11:30 to test Inhibin A, Inhibin B, AMH, and to do a CBC.

These results were almost instant. We have no idea what was causing the low RBC Count before, but my RBC Count is fine now.

Then Rick and I had lunch at Pure Vegan, per the usual.

Cardiology was at 2:30 at the Raleigh location. It was a positive visit with Dr. Deepa Upadhyaya. She’s confident I do not have any major heart issues. She believes the accelerated heart rate I am experiencing when exercising might be a neurological result of the surgery last year, but just to be safe, she wants me to return for an exercise stress echocardiogram in July.

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And today I received this amazing news. 🙌

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I'm NED!!

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Next up?

DXA Bone Density (to make sure Letrozole isn’t having an excessively negative effect on my bone density) and the ECHO Stress test -July 24

CT with contrast/ Dr. Rossi - August 12

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Thank you to all of you have who been faithfully praying for me on this journey!

The Fueled by Faith Podcast

I recently had the opportunity to talk to my friend, Emily, on her podcast - Fueled by Faith. Though the conversation was not what we had planned, we believe it is exactly what God intended for us both on a morning when we were both clinging to the promise of Psalm 73:26:

My flesh and my heart may fail, but God is the strength of my heart, and my portion forever.

A quick update

I know it’s been a while since I have given an update, and that’s because I have been waiting until I actually had something concrete to say. But this entire process, truly since the beginning, has moved painfully slowly.

After sharing the following with family this morning, I decided to share it here, too - even though there’s not much to tell.

I am doing a lot of reading about Resveratrol which is found in many foods like dark grapes and blueberries.

I am having a very hard time getting answers from Duke about the implications of my Foundation test and my bone density test, and the longer this goes on the more inclined I am *NOT* to go on Letrozole. I was told yesterday that Duke could not get me in with an endocrinologist until DECEMBER. There's no point in seeing the endocrinologist (re: going on Letrozole) if I have to wait until December. Our health care system is a mess.

Have a great Wednesday. Love you.

I ask you all to continue to pray for wisdom. I do not have peace about going on Letrozole without getting concrete answers about the implications of Foundation testing and the DXA scan.

Adventures begin when plans end

We had plans to go to New Orleans this weekend. But then we couldn’t get a plane ticket.

So we shifted gears and made plans to go to Maine. We had plane tickets, but then the flight out of RDU was cancelled… after we were already in Raleigh.

We pivoted again and drove to Crossville, TN, where we’ve had a lovely time exploring God’s creation.

Sometimes you have to make the best out of the situation in which you find yourself, remembering that we can make our plans, but the Lord directs our steps (Proverbs 16:9).

Last night’s dinner at a sweet little restaurant called Nicoletta’s was a reminder of that.