Thankfully, I’m video-conferencing more from home to meet with my primary care physician (Dr. H.A. Nguyen) to discuss my current health, various issues (cold, congestion, nasal drip, sinus, diarrhea), and to avoid going into his office unnecessarily and being exposed to others during a very active cold & flu season.
Every Friday, I’m undergoing my traditional immunotherapy and chemotherapy protocols to keep my mantle cell lymphoma diminished while we monitor and research the next steps…
On Friday, February 7th, 2020, we met with Dr. Shalini Dogra, my oncologist for Kaiser-Permanente in Tysons Corner, VA. Vicky and I were discussing my cancer and health issues over the past few months, our current issues, and asking where do we go from here?
CURRENT STATUS:
- Diagnosed with Stage 4 Mantle Cell Lymphoma (Code C83.18 MANTLE CELL LYMPHOMA, MULTIPLE SITES LN). Being treated using the R2 (Revlimid/Rituxan) protocol
- Diagnosed with lymphedema (edema, swelling of the left leg) which will take time and exercise to recede to normal size. May be treated using Lasik, but treatment would cause many other problems and side-effects given my history and current medications.
- Diagnosed with radiation-induced proctitis (colitis) in the sigmoid loop of the lower colon. Being treated using Carafate enemas to reduce bleeding, Lomotil to reduce diarrhea, Oxycodone to reduce severe abdominal cramps.
- Diagnosed with viral cold or flu of the head and upper chest. Being treated using an Advair Inhaler twice/day, Zyrtec in the morning, Benedryl at night.
- Diagnosed with neutropenia and immunosuppression. Continuing to monitor, receiving blood product transfusions when critically low, receiving Zarxio as needed to stimulate bone marrow production.
NEAR-TERM TREATMENT:
- My entire immune system has been reset and needs to undergo a complete vaccination history from birth to adulthood. Influenza vaccine was received in October 2019. Childhood (6mo age) vaccinations now required once my neutrophil count (immune system) supports introduction of dead or live viruses. Will need to monitor neutrophils weekly and receive vaccinations as necessary for next 16 months.
- Johns Hopkins and Kaiser-Permanente would like to perform a full-body PET scan (identify existing cancers, tumors, any new ones) and a bone biopsy. Johns Hopkins would like to perform DNA and Blood Chimerism analysis to see how much of my immune system is original and how much is from my donor. The last chimerism analysis (3mo post-BMT) was 100% Donor.
- Seattle Cancer Care Alliance (SCCA) recommended and Kaiser-Permanente agreed that my mantle cell lymphoma is responsive to targeted radiation therapy and R2 (Revlimid/Rituxan) chemotherapy. I am to undergo both until the cancer is eliminated, maintained, or progresses (and requires further intervention by NIH and Seattle Cancer Care).
LONG-TERM TREATMENT:
- My prognosis for the success of CAR-T therapy was 10-15% given its history with mantle cell lymphoma patients. Kaiser is impressed that it was unnecessary and that lymphoma reduced due to targeted radiation therapy and Revlimid/Rituxan chemotherapy.
- I am to undergo R2 (Revlimid/Rituxan) as weekly IV and daily oral for the foreseeable future. Until the cancer is in remission or progresses, this is how I am to be maintained.
- Targeted radiation therapy has been proven highly-effective given large inguinal clusters in October-November 2019. I will undergo further radiation to target aggressive clusters if necessary.
- My lymphedema may take many more months or year(s) to resolve. Elevate left leg and exercise as much as possible.
- My proctitis/colitis is being treated via Carafate enemas for bleeding, Lomotil for diarrhea, Oxycodone for pain, but 30% likelihood it may become chronic.
- Kaiser-Permanente recommends no changes to treatment, medication, long-term disability, or status until March 31st, 2020. Kaiser-Permanente would like to base all further recommendations and prognosis pending near-term PET scan, bone biopsies, and responsiveness to Revlimid/Rituxan.
Can you wear a compression garment for the edema? Or is the location problematic?
Yes, I usually do wear compression stockings on my left leg, and pressure socks on my right leg. My left leg is far more pronounced than my right. It was the large inguinal thigh lymphoma cluster that caused my leg to have blockage and reach such a size. Now my oncologist thinks it’s a combination of scar tissue (from the radiation) and lessened lymphomas that is causing the edema to take so long to decrease.
I just need to keep wearing compression stockings, elevate it when I can, and exercise to decrease the scar tissue and get the lymphatic system moving.