In response to our earlier email about my continued IV Rituxan therapy until we meet with Johns Hopkins to discuss my PET/CT scan results, cancer history, and long term prognosis, we got the following emails from Kaiser-Permanente:
Hi Ken and Vicky,
I made an appointment for Ken on Friday 3/13 at 9:00 am for Rituxan. Unfortunately, the 8:00 am appt is taken now, but if we get a cancellation I’ll switch the appt to 8:00 am if you would like. See you soon,
Please call Oncology or email your Physician for any questions or concerns.
Suzanne Moore RN BSN OCN Oncology Dept Tysons’ Corner Medical Center
Yes… I had messaged the Oncology staff that he can continue on Rituxan until his appointment at JHU if he wants. We can see what they say about Rituxan.
If he is to continue Rituxan maintenance, the protocol would not be weekly. I believe it’s every other month.
I am just worried about the decreased lymphocytes with Rituxan and his risk for viral infections.
He does not qualify for the trial/consultation at NIH because of the recent scan not showing any lymphoma activity.
The weekly or monthly Rituxan was to have been in the setting of active lymphoma being treated with Revlimid and Rituxan.
Based on the recent scan, I did not feel he needs weekly Rituxan.
In wake of all this viral outbreak, I want to make sure we are not weakening his immune system with continued Rituxan.
Together as Family, with Cautious Joy (March 2020)
NOTE: We’re together as a family as we’re “Celebrating with Cautious Joy” after my PET/CT scan this week showed no active cancerous tumors (mantle cell lymphoma).
Hopefully, this remission will last longer than my previous two. Unfortunately, with my aggressive cancer, remissions for me ended in relapse after two to three months. We’re meeting with Kaiser-Permanente and Johns Hopkins to discuss our next steps…
I was diagnosed with Stage 4 Mantle Cell Lymphoma in January of 2018. It is now March of 2020. This will now be my third remission from Mantle Cell Lymphoma since this arduous journey began. With both of my previous remissions (after Maxi-dose R-CHOP/”Nordic Protocol” in early 2018 and after my Bone Marrow Transplant in June of 2019), my cancer returned between two to three months later. With both relapses, our hopes and joys were crushed as I immediately began IV chemo, radiation, or was hospitalized with each.
It’s hard to be overjoyed or celebrate at the news of a negative PET/CT scan when you’ve had two relapses in two years in just over two months’ time each. Vicky and I are “celebrating with cautious joy” but continuing to take it day-by-day, week-by-week, and month-by-month. For each day, week, month, and [hopefully] year I remain in remission, we’ll give thanks to family, friends, our medical teams at Kaiser-Permanente, Johns Hopkins, the National Institutes of Health (NIH), and the Seattle Cancer Care Alliance (SCCA), and… of course to God for hearing our prayers and those of our family & friends!
I am still immunosuppressed/immunocompromised, but not currently neutropenic. I will continue getting my bloodwork done weekly, and using my ANC (Absolute Neutrophil Count), RBC (Red Blood Cell count), WBC (White Blood Cell count), Hematocrit (oxygen-carrying capacity of blood), and Platelets (clotting factor) to determine how much I can get out of the house and how much social interaction I can have. With the current Coronavirus epidemic spanning the world, I am severely at-risk and it would either hospitalize me or kill me. I’m continuing to wear disposable N99 filtration masks or re-usable cloth N99 filtration masks (with disposable N99 paper filter inserts) to reduce my risk when outside of the house, in crowded places. I also carry Purell, Lysol Spray, and gloves to either avoid contact or immediately sterilize my hands after contact.
At this point, our next steps are for me to have a bone marrow biopsy with Kaiser-Permanente to verify what the PET/CT scan reported. I should have no indication of metastasis. We’re also meeting with Johns Hopkins for my long-overdue six-month bone marrow transplant review, where I’ll undergo additional blood tests, they’ll be checking me for Graft vs. Host Disease (GvHD), and we’ll discuss why my blood products remain so low when it’s been nine (9) months since my bone marrow transplant.
In our last discussion with the Seattle Cancer Care Alliance (SCCA), their theories were:
My bone marrow transplant “barely took”, and the reason why my ANC, RBC, WBC, Hematocrit, Platelets all remain low is because they are being produced by my bone marrow in small, finite amounts. Blood cells of each type all have a short/set lifetime, die, and get replaced. My low numbers and cyclical ups/downs are representative of a weakly-transplanted bone marrow graft and the natural lifecycles of blood products.
My bone marrow transplant “is in better shape than ‘barely took'” but “there is something eating my blood products nearly as quick as my bone marrow can produce it.” SCCA recommended that both theories be investigated and researched further by Kaiser-Permanente in coordination with Johns Hopkins and NIH once we returned from Seattle in January 2020.
With the diagnosis and treatment of my radiation-induced colitis, it is not likely that colitis is “eating my blood products” as we may have first suspected. In the past couple of months, my ANC has slowly-but-steadily gotten better with it rising over 1.0 (the threshold for IV chemo using Revlimid) just a few weeks ago.
So this is not exactly a cause for revelry and celebration just yet… We’ll continue to meet with Kaiser-Permanente and Johns Hopkins over the next two weeks, with possible discussions or differential analysis by the National Institutes of Health (NIH) on what it means that my blood product numbers have been so low, and how to prepare or continue remission in light of a history of aggressive Mantle Cell Lymphoma that had two prior relapses within months. In the past, both Johns Hopkins and NIH recommended three years of Rituxan therapy as a means of “maintenance chemotherapy” to reduce the likelihood of recurrence. We’re going to ask why this isn’t being followed, recommended, or overlooked this time.
I started my 3rd cycle of R2 (Revlimid-Rituxan) on Palm Sunday, and by Good Friday my bloodwork had fallen and I was bruising easily (arms, elbows). I ended up sleeping for most of Easter Sunday, and my bloodwork had recovered on Monday.
Apparently the PET/CT scanner at Kaiser-Permanente Capitol Hill is the only one the KP has in the mid-Atlantic region, and it broke on Easter Sunday. Kaiser is repairing it this week and rescheduled me for 8 AM on Friday, May 3rd. I won’t know my results until I meet with my oncology team the week after.
And so it goes… it’s been a little rough and more than a little exhausting. Between chemo, insomnia, and a bout of depression, I keep trying to press on. As always, I’m thankful for Vicky, Kiyomi, Toshiro, and the support of all our family & friends.
At this point, I’ve now lost track of how many full-body PET/CT scans have been performed on me since I was diagnosed with cancer. I’m almost certain that this will be my fifth time through the donut for a low-resolution and high-resolution pass, but it might be my sixth.
I am TIRED of getting my hopes up only to have them crushed. My soul cannot take any more raising of hopes only to have them dashed. With each time, Vicky cries when we’re told the news, and I try to remain stoic and to “be of good cheer.”
On Monday, I will AGAIN go through the donut for an hour or two as they scan from the base of my skull to my thighs to check for the metabolic signatures of cancerous tumors compared to my fasting basal metabolism of a body denied food, sugar, caffeine, or exercise.
No matter what I am told next week, I am trying to steel myself to the news. I would love to be told glorious news, but I won’t allow myself to falter at terrible news. The old tripe of having faith is getting long in the tooth now… faith in God hasn’t stopped the oncologists from telling me I have tumors for the past four PET/CT scans.
I am trying… but my soul is wearing down with each test and each delivery of the results.
