Cycle Two – Jay’s Second Mantle Cell Lymphoma Treatment — Fair Skies
Fair Skies
In coastal Oregon, we experience more than our fair share of rainy and overcast days. When Jay and I moved here, we quickly learned to thoroughly enjoy the sunny days whenever they appeared. That is pretty much where we find ourselves at the moment, treatment-wise: enjoying fair skies.
Four-Day Getaway
Choosing to make the most of our trips to Portland every twenty-eight days, we stop at a casino so Jay can enjoy a bit of normalcy—and try to turn his against-the-odds luck against the casinos. I mean, the odds of being diagnosed with Mantle Cell Lymphoma are about 1 in 200,000. We should be able to cash that luck into something good.
Thank the Lord, Jay’s immune system has stayed solidly in the normal range, but we still visit the casinos during off-peak times to limit his exposure.
Our monthly treks also provide an opportunity to try new restaurants and haunt our favorite ones. If it weren’t for those pesky infusion appointments and the way the meds make him feel less than optimal, these trips could almost be mistaken for a sweet mini-vacation.
Did Allopurinol Cause His Adverse Reaction?
At Jay’s pre-infusion appointment, the nurse practitioner suggested that the flu-like symptoms and rash he experienced a few weeks earlier might have been a side effect of allopurinol.
Allopurinol is prescribed for the first fourteen days of Cycle One only. The first round of chemo can destroy a large number of cancer cells during those first several days. When those cells break down, they release a flood of uric acid into the bloodstream, which can damage the kidneys. Because the overall tumor burden is much lower by the subsequent cycles, allopurinol isn’t necessary for Cycles 2–6.
Jay’s rash appeared on the thirteenth day of his fourteen-day allopurinol prescription and disappeared four days after he stopped the medication. Did it go away because he finished the allopurinol? He also started taking Claritin three days before the symptoms vanished. Was that the magic bullet?
Some pictures of allopurinol rashes looked similar to Jay’s, but not quite the same. The articles I read said the rashes typically appeared within a few hours of taking the medication. Jay’s rash didn’t show up until thirteen days after he started it, but typically does not mean always.
Your guess is as good as mine.
Cycle Two
Cycle Two was slightly bumpier than Cycle One. Jay didn’t feel bad, just not good. Probably due to the acalabrutinib being in the mix. He takes it twice a day, and about thirty minutes after taking it, he develops a moderate headache and an irritated stomach.
The NP gave us hope. She said the side effects normally subside after five to six weeks.
The Rituximab infusion took only an hour and forty-five minutes this time, compared with four hours during Cycle One. The observation period for adverse reactions was also shortened to half an hour before they started the premeds for bendamustine. The chemo itself took just over ten minutes.
On our walk back to the hotel, we stopped at Al Hawr, a Lebanese restaurant, for dinner. This will become one of the restaurants we frequent.
After dinner, we popped into a convenience store and bought a Powerball ticket because the jackpot was over $999 million. Someone won the drawing, but it wasn’t us.
I really think when a patient is diagnosed with MCL, they should immediately be awarded some type of jackpot prize—free hotel stays and reimbursement for travel expenses during treatment, perhaps, or something to take a little of the sting off and help cover the treatment costs.
Back at the hotel, the pre-infusion Benadryl injection seemed to overpower the steroid. A few minutes into Jay's TV show, his breathing sounded like a tsunami siren. I turned off the TV and lowered the lights. Luckily, I wasn't ready to sleep before the siren faded out.
Day 2, the bendamustine infusion took fifteen minutes. Without the Benadryl, the steroid seemed to win the battle, helping Jay feel energized during our walk back to the hotel.
He went to bed around nine but woke up at 3:00 a.m., compliments of the steroid.
All in All, Cycle Two Was Unremarkable, Which Is Good
The first couple of days home after the infusions, Jay felt moderately crummy. When he stood up too quickly, he felt woozy for a few seconds, and fatigue dogged him.
Praise God, the acalabrutinib side effects stopped on Day 9 after the infusions—about two weeks after starting the medication.
The time between Cycle Two and Cycle Three was unremarkable—one of the terms I love reading in Jay’s chart notes. He did not develop flu-like symptoms or a rash.
Did that mean allopurinol was the culprit?
We will never know for sure.
Jay has not lost his hair from the treatments. He runs several times a week. He is strong.
Life is good.
The day before Cycle Four infusions, Jay has a CT scan scheduled to determine how well the treatment is working. The main enlarged lymph node has already decreased significantly, which is encouraging and makes us hopeful that the treatments are working as intended. The CT scan should give us a much clearer picture.
“The Lord will fight for you; you need only to be still.”Exodus 14:14 NIV
We are so thankful that we feel the Lord fighting for Jay’s health and that my Plan B is back on track—for the treatments to work as intended and for Jay to suffer no major side effects.
Writing these blogs is cathartic for me. They help me keep our journey in perspective. And I pray they will bring hope to individuals newly diagnosed with MCL who come across them.
May God richly bless you,
Angela
Don't Miss Out on Angela's Blogs
If you'd like to receive humorous glimpses at everyday life, book reviews, and occasional updates on my husband's health—join my monthly email list by clicking the "Join Now" button and providing your name and email address.
Angela L. Gold is an encourager who shares the love of Christ in her writing. She is the author of The Lion Within and Kill Shot.
