Support Registry Update

Initial Treatment Plan (I wanna be sedated)

In support of
Janel Gomez
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The initial recommendation for my type of cancer is an aggressive chemotherapy regimen called Pola R-CHP given outpatient every 21 days.

Chemo is supposed to take 8-10 hours each time.  The plan was to do 8 cycles that would end around late August.

The week leading up to chemo I started feeling very ill.  Up until then, the only symptoms I carried were the swollen glands and fatigue upon exertion.  But that last week I started having gastric distress, likely a combo of bariatric issues, extreme stress, Norco (love it), and the cancer.  I was barely eating and Jonathon and Natalie were buying every protein drink in the stores to see if I could keep it down.  Additionally, the lymph node in my arm pit had swollen to the size of a softball and cause pain in my back and the lymph site.  I wasn't sleeping well.

Though I was nervous about the chemo, I was hopeful I might get some relief from the pain I was in.  Hint: Chemo did not go as planned.

On April 2 at 7 am Jonathon and I went in for my first chemo treatment. They first gave me steroids, fluids, and antinausea medicine.  Chemo doesn't hurt, at least to me.  But they had me in a private room to watch me closely and check for reactions.
The first thing that did not go right is that the realized the would not be able to finish all in one sitting so I would have to come back on day two for 4-6 more hours of chemo.

Second, I had a reaction. It was traumatic, a scene out of a medical drama.  While infusing the Rutuximab (R from Pola R CHP), I got rigors, whole body shivering with loud teeth chattering and I had no control over it.  Jonathon stepped outside to inform the nurses and one of them YELLED "Reaction" and 5-6 of them rushed my room and started taking measurements, paging doctors, asking questions. They gave me several meds including Demerol, my new friend, and the rigors left.  They kept me under observation for about 30 mins and then resumed the treatment.

Third, we had been warned about this, but it still came as a surprise.  The oncologist ordered some genetic testing of the biopsied cells and suspected I have "double hit" or "triple hit" lymphoma.  Meaning the lymphona can be found in 2 or 3 of your genes.  So I got double hit (happy not triple hit, though) and the chemo regimen is going to be more aggressive to match the aggression of the Double Hit Stage 3 Large Diffuse B-Cell Lymphoma.

My new plan is still every 21 days, but is a continuous 96 hour infusion, so I will be hospitalized (not outpatient) to to receive the chemotherapy.
The new treatment is called R-EPOCH.  

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Jungkoo Kang

omg. omg.
  • about 1 month ago