Cycle One – Jay’s First Mantle Cell Lymphoma Treatment —All is Well
- lynneg1103
- Aug 14
- 6 min read
Updated: 1 day ago
Before I take you through the bumps in the road, let me reassure you: Jay is doing well. Cycle One wasn’t completely uneventful, but he came through it with his hair intact and is still doing the things he loves.
Eat, Drink, and Be Merry, for Tomorrow Hubby Starts His First Mantle Cell Lymphoma Treatment
We chose Chart House, our favorite Portland restaurant, for Jay’s pre-treatment meal. Water was our drink of choice because the treatment team likely frowns on starting infusions with hungover patients. We didn’t miss the libations, since we’ve never been big drinkers anyway.
Infusion Days Passed Smoothly, Like an Oil Change for Your Favorite Classic Car
We spent eight hours at the hospital the first day. The nurse followed an initially slow infusion rate for rituximab, which took four hours. The slow rate on the first cycle allows the nurse to watch for adverse reactions. The bendamustine infusion took all of fourteen minutes.
The rest of the time revolved around blood tests, patient education, watching for side effects, and pre-infusion medications: Tylenol, Benadryl, Zofran, and dexamethasone, a steroid.
Drowsy from the Benadryl, Jay nodded off several times, helping the time pass faster.
Since he did so well the first day, we walked the fifteen minutes along the riverwalk from our hotel to the hospital the second day. The bendamustine infusion took ten minutes, and we hung out at the hospital a little over an hour.
The nurses and other staff in the infusion center at OHSU are wonderful. Everyone we came in contact with displayed professionalism and compassion while helping keep the mood light.
Medicare Drug Plan Denies Doctor’s Request for Zanubrutinib
Insurance plans sometimes deny drugs in an oncologist’s treatment plan. We were lucky that Jay’s doctor had acalabrutinib as second-choice, when Jay's Medicare drug plan denied zanubrutinib.
FYI—I learned that many drug companies offer bridge programs to provide a drug while doctors appeal insurance denials. After an insurer denies a drug, some manufacturers will provide the medication at no cost if the patient meets their financial criteria. BeOne Medicines manufactures zanubrutinib and offered such a program, but we did not meet their financial qualifications.
His oncologist and my Google search estimated that zanubrutinib costs about $15,000 a month—unaffordable for the average Jay.
Additional medications prescribed included an antiviral since his immune system will decrease, a drug to help prevent the buildup of uric acid, and a couple of medications to prevent nausea.
Sharp Curves Equal Nausea
The only time Jay took an antinausea pill was during a particularly curvy section of our six-hour drive home when I was driving.
I took the curves at a slower speed at his request. Finally, he popped a Zofran and took over the wheel, claiming he felt less nauseated when in control of the car than when riding as a passenger.
This is in no way a reflection of my driving skills. The speedometer ticked higher when he rounded the curves than when I drove.
Medicare Drug Plan Approves Acalabrutinib
OHSU’s pharmacy would express-mail it to us as soon as they received it.
My New Plan for Jay to Have No Significant Adverse Side Effects Sped Right Along
Other than fatiguing more easily, he felt good. The enlarged lymph nodes around his neck shrank, and he barely felt them.
Cue Screeching Brake Sound Effects
On post-treatment Day 12, a headache and achy muscles slowed Jay down. Add an elevated temperature and a red rash on his lower legs the following day, and his symptoms collided head-on with my new plan.
Okay, I should stop making plans, but planning is embedded in the DNA God created me with.
A Trip to the ER
Day 14—of course it fell on a Sunday—Jay’s flu-like symptoms and the rash worsened. We called his OHSU medical team.
After we sent pictures of the rash, the nurse we spoke to thought it looked like petechiae—tiny red dots caused by minor bleeding under the skin, often associated with low platelet counts. He sent us to the nearest ER, thirty miles away, to have Jay’s platelets tested. We offered to drive to Portland, but the nurse indicated that six hours was too long to wait if Jay needed platelets.
I assumed I would drive. If someone is sick enough to go to the ER, it seemed that said person shouldn’t drive. But Jay insisted on taking the driver’s seat.
He said he could get us to the ER faster than I could, which I doubted until we hit the road. I felt like a passenger in Grand Theft Auto. We arrived at our destination in record time, with a permanent indentation in the passenger-side floor mat where I unsuccessfully attempted to slow the car.
The ER nurse took Jay right back. The OHSU on-call nurse had called and updated the ER staff before we arrived.
I had all the information at my fingertips to answer the ER doctor’s questions about infusion dates, medications taken, and symptoms. I had kept a detailed notebook starting with his first infusion and brought it with me to the ER. The ER doctor also consulted with the on-call doctor at OHSU.
Released Without Answers
The blood tests revealed that Jay’s platelets and white blood cell counts were in the normal range, and he didn’t have any of the infections they tested for.
After the results were in, the OHSU doctor told Jay to hold off on starting the acalabrutinib to prevent muddying the waters by adding a new drug before his current symptoms subsided.
We were then released on our own recognizance.
The next morning, Jay’s symptoms remained the same. Internet pictures of cellulitis and Stevens-Johnson syndrome looked similar to Jay’s rash, but the OHSU team ruled them out because his symptoms didn’t line up with either condition.
Anxiety Hits a New High
Not knowing the cause of his reactions topped off my anxiety tank.
Jesus warned us about worrying:
“Can any one of you by worrying add a single hour to your life? … Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”—Matthew 6:27, 34 NIV
Claritin?
The OHSU doctor instructed Jay to take Claritin in case his symptoms were caused by a delayed reaction to the bendamustine.
Who knew the same over-the-counter medication sitting in our medicine cabinet for allergy season might help with a delayed reaction to chemotherapy?
Sure enough, a few hours after taking one Claritin, his symptoms eased.
On Day 16, he continued improving. Whatever the cause, the Claritin helped Jay return to his new normal, and we were very grateful.
Sometimes doctors must work through possibilities when there isn’t a definitive test that identifies the cause. Claritin worked in our situation, but do not try this without consulting your oncologist.
Compared to symptoms many people experience during cancer treatment, Jay’s weren’t so bad.
On Day 22, he stopped taking the Claritin. When his adverse symptoms did not return, I relaxed, and he took his first dose of acalabrutinib on Day 24.
He takes it twice a day. Around an hour after swallowing it, he gets a slight headache that lasts for a few hours, but it isn’t bad enough to require pain medication.
Jay continues running, mowing the yard, doing the heavy lifting around the house, and playing with our toddler grandson. While he tires more easily and naps more often, the treatments have only slowed him down slightly.
Cycle One Down, Five to Go
As we prepare to return to Portland on Day 29 to start Cycle Two, we stand on this Scripture:
“Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”—Joshua 1:9 NIV
What We Learned from Cycle One
Keep a detailed treatment notebook.
Take pictures of anything unusual, especially rashes.
Know who to call after hours.
Don’t assume a symptom is “normal.”
Ask questions.
Bring a medication list to the ER.
Give yourself permission to laugh when you can.
Take treatment one day at a time.
If you're about to begin your first cycle, I hope our experience gives you a realistic picture: treatment may bring some unexpected bumps, but those bumps don't necessarily mean something is terribly wrong.
Blessings,
Angela
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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.
