New old chemotherapy

The news this week of more tumor growth brought us to start treatment immediately. With the tumor growing, there’s no reason to wait. Last year’s chemo bought us only several months of stability, so Dr. Nghiemphu ruled out going back on Temodar. She recommended an older drug combination called PCV that’s coming back to use based on research published last summer. PCV chemotherapy is a series of Procarbazine, CCNU (Lomustine), and Vincristine doses that were the standard of treatment following surgery and radiation 20 years ago before Temodar was available.

A long-term study revealed that brain cancer patients with recurrent Oligodendroglioma who also have a 1p/19q chromosome deletion have fared well with PCV treatment. Since Susan’s tumor has oligo cells and her DNA is missing those chromosomes, she may respond well also. Our one reservation is whether her body can handle it after nearly 6 years of ingesting heavy-duty chemicals. We’ll need to watch for worsening blood counts and other side effects.

Meanwhile, she had one dose of oral CCNU this week, will go to UCLA next week for Vincristine IV, and then will start two weeks of oral Procarbazine. She’ll go back for Vincristine three weeks later, get labs done, and start the whole cycle again if her counts are okay. With PCV, CCNU, and UCLA for GBM, all I need to do is keep the acronyms straight.

Wednesday’s MRI also alerted us not only to tumor growth and brain swelling, but to enlarged ventricles. This indicates fluid build-up or hydrocephalus. We don’t know whether it was triggered by tumor growth or a failure of her shunt, but it we may need to have the shunt checked out. That could mean another surgery to replace the L-P shunt; but we’ll see. At any rate, between brain swelling and hydrocephalus, we need no other explanation for her present physical and cognitive weakness.

We’re so encouraged by people’s expressions of care and the many prayers lifted on our behalf. We remain secure in God’s peace and confident in his plans for us. I spent a good deal of the past month or so meditating on Psalm 50. As a writer, I’m intrigued by its verbal theme – God speaks. His word is powerful, commanding, and carefully used. But buried in there I found his valuable command. “Sacrifice thank offerings to God, fulfill your vows to the Most High, and call on me in the day of trouble; I will deliver you, and you will honor me” (Psalm 50:14-15).  

Again, it’s all about words: thankfulness, keeping vows, and crying out, which is a fascinating idea from the One who created the universe by speaking and whose Son is the Word of Life. But that’s to explore another time. God’s word to us here is simple: be thankful, obey, and cry out. His promise follows: he will deliver us. He also promises that we’ll honor him, a result that defines the right relationship with God.

We’re learning what it means to be thankful, to obey, and cry out, and we’re so glad for God’s faithfulness to deliver us. In that light, our circumstances don’t really matter.

Tumor growth again

Yesterday, Susan’s unscheduled MRI showed increased tumor in her left frontal lobe and some swelling overall. Her neuro-oncologist had been concerned that her sudden seizures two months ago might be an early sign of tumor growth, so that hunch proved true.

She’s had some worsening symptoms over the past weeks – right hand tremor, cognitive and physical weakness, and a day of flu-like vomiting. Earlier this week I noticed right-side weakness, slower movement, and a shuffling walk. Tuesday night I did an amateur neuro exam and confirmed her right side had a weaker grip, arm and leg numbness, and a slightly drooping smile, so I started an email chat with Dr. Nghiemphu.

When Susan started vomiting yesterday morning, the doctor wanted an MRI right away and made the arrangements while we made tracks for UCLA. The growth this time is undeniable but doesn’t seem fast-moving, which brings some comfort.

We’ve known for some time that her Grade IV GBM diagnosis also has a component of Oliglodendroglioma, a less-aggressive, Grade III brain cancer. We don’t know which cell type is more prevalent; but her tumor has behaved like an Oligo – still incurable, but slower-growing and responsive to treatment. With that, Susan starts another chemotherapy known as PCV that’s been effective with some Oligo patients. It’s a hopeful step.

Yesterday was a long, eventful day for us. Susan is tired. The news wasn’t altogether unexpected and is no more welcome; but we have the peace of God, his presence and guidance, and the care of the best medical professionals we know. We continue to thank God for his many mercies on our journey.

Stable MRI, seizure control, and dermographia

We saw great results with Susan’s four-week MRI today – continued tumor stability and the evidence that her six cycles of Temodar were nicely effective. Dr Nghiemphu continues to be concerned that the onset of Susan’ seizures last month is the leading edge of more tumor growth, so we’ll be back for another scan in six weeks. Her October scan is our new baseline for comparison for growth – October shows slight regression vs last May, while today’s scan shows stability vs October.

Meanwhile, we updated the neuro-oncologist with Susan’s status on Keppra + Vimpat for seizure control. We haven't noticed any seizures since discharge from UCLA four weeks ago. Dr Nghiemphu figures Susan had been having sub-clinical seizures for some time before they became noticeable, which would account for her increased confusion over the many weeks leading up to the cycle that erupted last month. The news is good now though: tumor stability and seizure control.

Finally, we shared with Dr. Nghiemphu the results of Susan’s visit to an allergist last week. It was quite a process of discovery, and another view of the medical role of problem-solving. Dr Schoendorf is a veteran physician who quickly got to the point when walking into the room: “How can I help you today?” After I described how Susan’s skin had broken out within 30 hours of a chemotherapy dose last August and that it had persisted mildly pretty much every day even though chemo was suspended in October, I said we wanted to find out if she has some other drug allergy.

He said we might be frustrated to know there’s no blood test to check for drug allergies. He then pursued a routine of questions about changes in Susan’s diet, clothing, bedding, soaps, etc. There were none. When I described the rash and welts that develop, he pronounced that she has hives. Now we were getting somewhere. Then he said we might be frustrated to know that 95% of the time we don’t know what causes hives. When I mentioned she gets the hives near the collar of her nightgown, from the folds of the sheet under her back and so on, he had a hunch.

He pulled her sleeve up and gently scraped Susan’s forearm with his pencil eraser. Instead of having little reaction, it got “hot” as we talked, becoming reddened and more defined, leaving a perfect trace of the eraser on her skin. He pronounced that she has dermographia. It literally means “skin writing” and happens when cellular changes in the skin cause histamines to be released without the presence of natural antigens to counter them. He said the dermographia is what’s causing the hives. Now we were really getting somewhere.

Then he said we might be frustrated to know they don’t know what causes dermographia. I wondered whether Susan reached some toxicity level from chemo that triggered it initially. He said there’s no way to know that. The condition comes on spontaneously and can leave the same way. Or not. With the cause unresolved, we focused on treating the symptoms. I’d been giving her Benadryl (an antihistamine) each morning and evening; but he doesn’t like its short-term results and side effects like drowsiness. He recommended Allegra since it’s taken once daily and has fewer side effects. She’s had the Allegra for a week and no more hives, a good thing.

Susan’s allergist event was another border skirmish aside from the larger war of brain cancer, but has some similarities. We know it’s there, but we don’t know why. We can’t cure it, but we can try to allay the symptoms. Having already made peace with not knowing why, we’ll just get on with life such as it is in brain tumor world and dermo-graffiti land. We remain thankful to God for his goodness and faithfulness in all things.

Home again at last

We’re so thankful to be home again at last after a blur of a week and glad to ring in the New Year in the comfort of home. We needed an extra day or so for the neuro team to be confident that Susan’s meds were properly arranged. Once she was off Ativan and seizure free for a full day and then some, she was discharged Sunday afternoon.

We’ve shifted to home care, her first shower in over a week, and sleeping through the night without full-voiced staff coming in to take Susan’s BP or check her blood sugar. She’s already gained strength amazingly for having been bed bound, but is still a fall risk. She’s chipper, chatty, and the right amount of sassy. I’ll keep a close eye on her through tomorrow and make sure she has stand-by assistance and alert eyes for seizures.

Susan and I would like to thank everyone who has lifted us in prayer and provided support for us not only through this episode, but for the past 5 ½ years. Our gracious Lord keeps providing for us in every way, sustaining us with hope and peace for this life and the next. We continue to pray for Susan’s recovery at home and for a favorable brain tumor update in three weeks.