Non-Hodgkin Lymphoma Stories: Survivor Talks Chemo & CAR T-Cell Therapy

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07/09/23

NOTE: Skip to a section via time codes below.

Sonia Su was finishing up grad school when she got hit by a non-Hodgkin lymphoma (primary mediastinal b-cell lymphoma diagnosis), stage 2. After undergoing R-CHOP chemo, she relapsed.

For second-line treatment, she underwent R-ICE and preparation for a stem cell transplant. Unfortunately, the cancer had returned before the SCT could happen. Instead of accepting the chemo and radiation treatment assigned to her for the third time, she looked for CAR T-cell therapy treatments and thankfully, qualified.

Today, Sonia is thriving. She shared her entire patient journey through survivorship with www.ThePatientStory.com. Her full story will be posted here.

TIME CODES (approximate)

Diagnosis
(1:00) First symptoms
(3:42) Scans and tests
(4:30) Core needle biopsy
(5:30) Getting the results
(6:00) Getting admitted to the hospital
(8:50) Navigating the time waiting for answers

Treatment Decisions
(10:33) (19:50) Figuring out where to go for medical treatment
(12:50) Describe the PET/CT scan
(15:20) Describe the contrast dye during the scan
(17:05) How did the oncologist describe the treatment plan
(20:45) Was there a choice on getting a port vs. PICC line vs. IV
(22:57) Talk of fertility preservation

1st Line Chemotherapy: R-CHOP
(26:25) What were the R-CHOP infusions like
(29:42) Importance of caregivers at infusions
(30:35) When did you feel side effects
(32:20) Hair loss
(34:25) How did it feel getting your head shaved
(36:30) Describe the post-treatment PET/CT scan

Relapse
(38:20) Feeling symptoms again
(41:58) Going to the emergency room
(44:00) Staging

2nd Line Chemotherapy: R-ICE & Transplant Prep
(44:36) Preparing for second line treatment
(46:28) Describe the R-ICE chemo cycle
(47:00) Getting a 2nd opinion on treatment options
(48:15) R-ICE side effects
(48:55) What helped with the side effects
(51:42) Losing hair a second time
(52:55) Tests before stem cell transplant (SCT)
(54:10) Getting a stem cell donor match
(55:15) News of second relapse
(56:37) Deciding on 3rd line treatment

CAR T-Cell Therapy

(58:39) Describe CAR T-Cell therapy
(1:01:10) Describe radiation
(1:03:39) Pre-conditioning chemo
(1:04:12) A beautiful surprise before the T-cell infusion
(1:06:38) Describe the actual CAR-T infusion
(1:08:13) How long was the infusion and describe the recovery
(1:09:02) The ICU
(1:12:12) Recovering at home
(1:14:19) How were you feeling before the next PET scan

Reflections
(1:16:12) Survivorship
(1:18:20) Impact of cancer on your relationship with your parents
(1:20:35) Advice for others in getting support during treatment
(1:24:05) How did you get through the worst parts of treatment
(1:27:10) Your non-profit