1) Congratulations! You remain in remission from Mantle Cell Lymphoma.
There is no evidence of recurrent hypermetabolic or structural evidence of high grade lymphoma. Specifically, no abnormal uptake in normal-sized lymph nodes, pathologic lymphadenopathy by size criteria, hypermetabolic focal splenic lesions, splenic uptake above background or suspicious FDG avid osseous lesions.
2) Congratulations, you have splenomegaly!
Current splenic measurements are 16 x 8.5 cm in craniocaudal by transverse dimensions, similar to prior.
3) Congratulations, you have a kidney stone in your left kidney!
Possible layering calyceal stones in the left greater than right kidneys. No hydronephrosis.
4) Congratulations, you have age-appropriate degenerative changes in the spine.
February 4th, 2018 – First Round of IV Chemo for Stage 4 Mantle Cell Lymphoma
803 DAYS AGO 115 WEEKS AGO
26 MONTHS OF CHEMOTHERAPY AGO
Apparently, Kaiser-Permanente has been keeping track of my chemotherapy protocol, how many months it’s been since my first chemo, and told me today is the “26th Month Anniversary” since beginning chemo at Virginia Hospital Center on February 4th, 2018.
Today (17-Mar-2020) marks 26 months of chemotherapy since I was diagnosed with Stage 4 Mantle Cell Lymphoma. I’ve lost over 40 lbs and most of my body hair since this picture was taken, but I’m thankful to be with you here today.
The IV clinic felt surreal today, with every nurse gowned up and practicing extreme hygiene and distancing, all of the patients wearing N95/N99 masks at all times and practicing distancing. I wasn’t sure if it was a hospital or a scene from a Stanley Kubrick movie.
Another Day of Chemo at Kaiser-Permanente (Burke, VA)
I fall to my knees and thank God for Victoria being by my side and my constant companion these last two years. What an incredible journey this has been… and the journey continues!
No real reason, just a wonderful song to sing to yourself when wide-awake at 3 AM after little more than 3 hours of sleep. This is my first night of insomnia since coming to Johns Hopkins. My mind is racing with thoughts of home, thoughts of the office, thoughts of family & friends all far from here. I am bursting at the seams to be anywhere but here.
I wonder how my orchids are doing on the windowsill. I am not entirely certain what I’ll be returning home to. I’ve resigned them to their fate in the hopes they may be well-cared-for during my brother-in-law’s infrequent visits.
I wonder how Amitabh, Sam, Andres and the rest of our team at the office are doing. I felt so far-removed from office life being at home this past year for 16 months of chemo that their “telepresence robot (laptop)” felt like a ray of warm sunlight on a cold afternoon. We truly do have a wonderful team at what was once Invincea and now Sophos. I hope that I return to the same wonderful team, but both our office and our team has been through so much?
My mind often returns to Brad, Christina, Kiyomi, and Toshirō, but I feel like a character in a Peter S. Beagle novel when I try to form the words. I feel like Prince Lir in The Last Unicorn when I say:
I’ve had time to write a book
About the way you act and look
But I haven’t got a paragraph
Words are always getting in my way
Anyway, I love you
That’s all I have to tell you
That’s all I’ve got to say
And now, I’d like to make a speech
About the love that touches each
But stumbling, I would make you laugh
I feel as though my tongue were made of clay
Anyway, I love you
That’s all I have to tell you
My mind bounces and aches at Mo, Heather, Onalee, Julia, and others who live, love, and struggle through their lives. Phoebe & Corky were as much a beloved pair as Kiyomi & Toshiro. My heart is still missing a piece since I heard of Phoebe’s passing. Mo and Geo were extraordinarily loving parents. Vicky and I should be so fortunate to be as loving a family to our Shelties as Mo and her husband were to theirs.
And so many other thoughts from the phosphor glow on the other side of your monitor screen. I feel caught and helpless here; an animal stuck in amber awaiting his escape into life again.
I can read about others. My heart can leap with theirs in joy or ache in compassionate sorrow, but there is so much I wish to do and to give thanks for once I finally leave this most terrible time and place. 💕✌
I was diagnosed with Stage 4 Mantle Cell Lymphoma (MCL), which is a Non-Hodgkins Lymphoma in February 2018.
I immediately did 6 cycles of R-CHOP (Nordic Protocol) in accordance with Kaiser-Permanente, Johns Hopkins, and NIH. I was briefly in remission for a little over 2 months while doing Rituxan as a maintenance chemo (I declined BMT in favor of Rituxan).
Doing several cycles of Imbruvica-Venclexta showed no response, so I was moved to R2 (Revlimid-Rituxan) which showed progress by its 4th cycle.
Now after 16 months of chemotherapy and postponing my BMT twice, I’m to be admitted to Johns Hopkins Baltimore for chemotherapy and total body irradiation starting June 14th with the transplant on June 20th, 2019.
At 47 years old with Mantle Cell Lymphoma (MCL), it’s been a scary ride this past year. Having read so much about MCL and Bone Marrow Transplants, my wife and I are remarkably anxious about what we suspect to be an ordeal ahead.
Are there there other MCL patients in this group? Any advice you’d give to someone about to undergo an Allo (Non-Related Donor) bone marrow stem cell transplant in 3 weeks’ time?
