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Posted 2019-05-20T16:35:00Z

A Medical Update and Travel Plans

My last update was on March 27, just as Mihály was wrapping up his second cycle of second line (Gemcitabine) chemotherapy treatment. Since then, a lot has happened medically:

Second Line Chemotherapy: No Effect
Another CT scan on March 29 showed that the liver tumors had doubled in size since January 31, while the pancreatic mass remained unchanged. Despite the fact that we had made it a point to discuss post-scan options with the oncologist ahead of time, the team that day was unprepared for anything other than administering a third cycle of Gemcitabine, which was cancelled.

They discussed attempting as a third line treatment a pill form of chemotherapy used to treat colorectal cancer, and finally scheduled a biopsy for the molecular testing we’ve been asking about since August. Mihály was sent home to wait, unclear about when and if he would receive the pills. He had the impression that they were a placeholder treatment until molecular testing revealed the possibility of more targeted treatment, but we didn’t know if we had to wait for insurance approval or what.

Waiting on Uncertain Treatment: A Down-Turning Point
The anxiety of waiting in uncertainty had immediate physiological effects that day and onward. Mihály began feeling the pain in his lower back more acutely, became markedly depressed and lost his appetite.

The following week, while Mihály was having a liver biopsy, I received a phone call from his oncology nurse and pharmacist explaining how he should take his new chemotherapy drugs. They wanted to explain to him in person, but wouldn’t be available again to do so for a week. They wanted him to start the meds that Saturday, and so the pills were mailed to the house.

Mihály felt abandoned by the increasingly hands-off approach of his team and his depression settled in more deeply. Since the end of March, his weight has been declining as he’s continued to struggle with weak appetite – right now he’s about halfway between last year’s low of 115 lbs and this year’s high of nearly 150 lbs.

Third Line Treatment: The Challenge of Chemotherapy in a Pill
Mihály’s previous two chemotherapies had been infused directly into his veins over the course of 4-48 hours via a Bioflo power port installed in his chest, followed by two weeks’ recovery. This third line treatment, Xeloda, involved a very different cycle, requiring him to swallow 3-4 pills every twelve hours for 14 days, followed by one week of recovery.

Mihály already takes pills for diabetes every twelve hours (in addition to a morning insulin injection), prescription enzyme capsules every time he eats, plus more than a dozen other as-needed prescriptions for managing pain, stomach and bowel symptoms throughout the day. Some need to be taken before eating, some after; some can’t be taken together and must be spaced hours apart.  He did an amazing job integrating Xeloda into his self-administered regimen, but struggling through his pain and lack of appetite wore him down – physically, emotionally and mentally – in anxious 12-hour cycles of worrying about the next things he had to put in his mouth. He went from eating 4-6 times per day to only twice.

New Side Effects: Severe Enough to Stop Treatment
Xeloda’s trademark side effect is burning, peeling skin on the hands and feet, best treated with a topical like Udder Cream, which contains urea. Mihály managed his first cycle (two weeks on, one week off), with minimal side effects.

During his second cycle, his feet became as if sunburned on the bottom – angry red, peeling and swollen – which we successfully treated with ice packs for a few days. However, after about ten days in, his hands were affected to the point he had trouble with the doorknob and the button on his pants, so treatment was discontinued.

On a positive note, since the beginning of April, Mihály’s hair has begun growing back. He’s especially excited to have eyelashes and eyebrows, and his mustache and beard are (I think) close to normal.

Third Line Chemotherapy: Also No Effect
On May 16, we received the results of the latest CT scan. After two cycles of Xeloda, the liver tumors have continued to increase in size, while the pancreatic tumor has maintained no change.

We also received the disappointing results of the molecular profiling, which tested for hundreds of known mutations but found none known to be actionable.

Doctor’s Advice: Postponing Fourth Line Treatment
The oncologist pointed out that third line treatment for pancreatic cancer doesn’t technically exist, and now we’re looking at a fourth line treatment: an infusion comprised of three of the five drugs from the first line attempt. Basically, we’re beyond known treatments and they’re just trying different things to see if they might work.

He encouraged Mihály to follow through with our travel plans this month and to schedule the new treatment whenever we get back, because, as he said, he didn’t want to risk making Mihály sick with side effects before he got a chance to do something fun.

Living Life: Travel Plans
From here, there’s nowhere to look but up.

Since the day he discontinued Xeloda, Mihály’s spirits have been lifted, his mind free from the heavy burden of self-administering poison twice a day. Even after the disappointing news from the oncologist, he was able to look at the calendar – showing no future appointments for the first time since November (when he’d lost insurance for two months) – and express feeling a certain sense of freedom and celebration.

We do indeed have plans to travel westward, to the heart of Texas Hill Country, for a reunion with our soul-family of full-hearted songwriters and music lovers. This past year, in this house, our lives have been woefully lacking music. Last year, Mihály learned the love and lived the magic that is found at the Kerrville Folk Festival, and I’m delighted to see him getting excited about going again!

Our trip will last a month or more, and so any financial help you might choose to contribute at this time will go towards gas money, food, campground fees, and a few needed miscellaneous items (like therapeutic ice-pack socks for Mihály, a pop-up shade canopy, etc.) We’ve pretty much exhausted our current resources with preparations, the most significant of which has been installing a new timing belt and cleaning and resealing the cylinder head of the Honda. We plan to leave in the next couple days.

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Comments (1)

  • Susan Kammeraad-Campbell
    Susan Kammeraad-Campbell

    Shanna, come here. You and Mihaly have a place to be in the room that was Bill's and mine. It is full of love.

    9 months ago · Reply