Oncologist Visit – 5/19/26 – Strength Runs On Hope

Before Matt’s appointment I drove to Dunkin’ Donuts to get him some of his favorite donuts (white sprinkle) and get myself some coffee.  I pull around to the drive thru window to pay.  The drive thru worker looks me square in the eyes and says: “Man you look really tired.  Hopefully this coffee helps.”  I wanted to explain to him how dealing with cancer for four and a half years can make you look this way.  But I refrained.  A lot of people are dealing with different hardships in their daily life not just our family.  The hardships may present themselves differently, but for everyone the struggle is the same and is indeed real.  Though he’s right. Coffee does help.  On to the update.

Matt had another oncologist visit on Tuesday. The purpose was two-fold: to check his blood levels after the week of chemotherapy and to discuss the upcoming clinical trial.

As expected, the chemotherapy treatment from the prior week took a toll on both Matt’s red and white blood cells. Matt had been feeling very lethargic the past day or two and low hemoglobin was probably the culprit. His hemoglobin was at 7.5 which was down 2.1 from eight days ago. Following the oncologist visit Matt was sent over to the infusion center to his usual infusion room to ‘fill his tank’ as the doctors say with more hemoglobin. He received two bags of hemoglobin over the span of six hours. This usually gives him more pep and energy in the days that follow.

His ANC (white blood cells) levels were still very low at 17. Again, the normal here is 1500. It’s still better than the 0 he logged last time. We did administer the shot on Saturday evening which should stimulate the bone marrow to produce more white blood cells. My guess is that over the next few days the white blood cell count will shoot up as this happens.  Matt will be back at clinic on Friday to check these levels again.

At this visit, the clinical trial was also discussed. The plan going forward is to enroll Matt into a clinical trial. The trial hasn’t opened yet but is expected to be open the first week of June. It will open initially in only two locations: Hershey, PA and St. Josephs Children’s Hospital here in Tampa where Matthew is being treated. Matt’s team of doctors is pushing to get this trial open specifically with his case in mind. This brings us hope.

What we know about this clinical trial is that it is the same chemo treatment/regimen Matt has been doing but with the addition of a drug called DFMO. This drug does not really help with active cancer but recent research has shown that it has strong potential to prevent new cancer from developing. The hope is that the chemotherapy and radiation treatments knock out the existing cancer areas and the DFMO keeps any new cancer from developing.

Matt still has to qualify for the clinical trial so there’s a lot of prerequisite activities that have to be completed in the upcoming weeks. These include an echocardiogram, a bone marrow aspiration (under anesthesia), a 24 hour urinalysis collection (to be used to check his creatinine clearance levels) and a hearing test. DFMO can potentially cause temporary partial hearing loss so doctors want a baseline level to compare with.

The upcoming weeks through beginning of July will be tentatively scheduled as such:

• May 28-29 – PET/CT/MRI
• June 1 – Nephrologist visit
• June 3 – Echocardiogram / Bone marrow aspiration / hearing test
• June 8 – Tentative start to clinical trial regimen
• June 8 – Early July – Radiation treatment (Monday-Friday)

The Appointments calendar will always be updated with the latest.

I have a feeling there will be a lot of Dunkin’ Donuts coffee in my future.