After meeting with the Clinical Director of Oncology, Victoria and I have more to consider and digest. Last Thursday morning was an overwhelming amount of studies, statistics, trial protocols, and mortality rates.
In the words of Dr. Douglas Goldstone, chemotherapy and immunotherapy are like using a lawnmower or pulling a dandelion. Both remove what is above ground and visible, but it’s unknown whether any root remains. As long as root remains, Lymphoma stem cells remain, and the cancer will likely return.
With 2019 technology, medical professionals are unable to tell if any Mantle Cell Lymphoma stem cells remain after chemo and immunotherapy. PET/CT scans will only show cancerous tumors, not the microscopic stem cells which led to their formation.
Johns Hopkins has a 60-70% success rate with bone marrow transplants. The purpose of a bone marrow transplant is so the donor’s bone marrow blood product (T cells) recognize the Lymphoma stem cells as a virus and eliminate it. Unfortunately, it may take days to months before this recognition happens, it may not be successful, and it may trigger Graft vs Host Disease (GVHD).
With my health and success so far, Johns Hopkins wants to put me on a double-blind clinical trial for an experimental drug that is intended to aid in the recognition of cancer cells as foreign bodies to be eliminated by T-cells. Unfortunately, this experimental drug also increases the likelihood and risk of Graft vs Host Disease, so I will need to be closely monitored if I opt to join this study.
So far they have 16 patients on this study, they have a goal of 80. Mortality from Graft vs Host Disease for my age is around 3%. Between the effects, potential, and risk, Vicky and I had a lot to review and digest. If agreed to, it would begin in a month, and last for 6 months or so.
Hopefully, this will be our last week at Johns Hopkins before being discharged home. Vicky and I attended the “Discharge and Home Care” class this last Thursday. We were told we’d likely be discharged from Johns Hopkins on Friday, August 16th.
Between now and Friday, I’ll be getting a bone biopsy, a full-body CT scan, and have my Hickmann Catheter removed under interventional radiology. As you can see in today’s picture, that’s our living room triptych behind me. We were able to go home for a couple of days as a trial and to prepare for our homecoming. Vicky and I were able to spend Friday and Saturday (today) cleaning the house, running errands, and preparing for our return home.
Tomorrow (Sunday) will be back to Johns Hopkins in Baltimore for what we hope will be our last week there. God-willing, I’ll stay healthy and we’ll be able to go home this coming Friday!
Other patients, some younger than me, have endured whole-body infections and pneumonia since their transplants. I have been incredibly fortunate. I received good news today while the patient in the clinic beside me received bad. I didn’t know how to react to that… I have been blessed beyond all measure.
All going well, Vicky and I will attend our first Discharge and Home Care class this coming week. All going VERY well, we’ll likely be going home on the week of August 19th.
Pray for us. I truly hope and pray that we’ll be home and reunited as a family again soon.
It’s been 11 days since my Bone Marrow Transplant on Thursday, June 20th.
MONDAY, JULY 1ST, 2019 (DAY +11)
It’s been 11 days since my Bone Marrow Transplant on Thursday, June 20th. My bloodwork results are at their lowest point (nadir) since coming to Hopkins, but I’m beginning to feel “bone pain” in my shoulders, hips, and femurs. I’m hoping this means my new bone marrow is being stimulated and I should see the numbers increase in the coming weeks.
Speaking with Dr. Bolanos-Meade and Dr. Swillen yesterday, the earliest a patient has been discharged has been Day +45. The average for Bone Marrow Transplants is around Day +65 (+/- 7 days). So far, they like my numbers and my progress, asking me to keep up our strict adherence to hand-washing, hygiene, and infection prevention.
Vicky bumped into the patient and her family across the hall this morning. She had her Bone Marrow Transplant 67 days ago, she’s going home tomorrow. I’m happy for her, but also a little saddened and jealous.
Mouth sores, rashes, and dry skin have been the biggest issues so far. I brush my teeth multiple times a day now and use Biotene to keep my sores and dryness in-check. My lips keep cracking, so I use Burt’s Bees (honey lip balm) to keep them moist and clean.
And so it goes… I yearn for that day when we get the good news ourselves, and when our homecoming is in sight.
Sunset at Johns HopkinsTogether at Johns HopkinsHickman Catheter Placement
T-7 DAYS UNTIL TRANSPLANT – Today’s Notes:
🏥Victoria and I checked into Rm 202 of the The Hackerman-Patz Patient & Family Pavilion at Johns Hopkins in Baltimore today. We’ll be here for the duration of our stay.
💢 Today’s procedure was the insertion of the Hickman Catheter in my right chest, next to my mediport. They tested it and verified I’m ready for my first chemo using it tomorrow.
😪 Vicky and I are both exhausted. Today was physically and emotionally exhausting. Know that our hearts and thoughts remain with Christina, Brad, Kiyomi, and Toshirō.
We’ll post more pictures and better explanations tomorrow. We’re both exhausted this evening.
Two days before our patient admission to the Sidney Kimmel Cancer Center as part of Johns Hopkins in Baltimore. Another 20 minutes of CT scans today and a pint of blood so I can be cleared and validated. I’m doing my best to not think about the enormity of this, but to focus on the day-to-day events and recovery.
I think Vicky and I are beginning to feel more excited and a bit more anxious. Dr. Dogra (my oncologist) did a fantastic job explaining and preparing us for what to expect these next few weeks. It’s going to be busy as we prepare for our stay at Johns Hopkins.
I already have eczema and psoriasis, which will be significantly irritated by my chemo and radiation. Expect me to look really rough (emaciated, scaly, and sallow) these next few months.
I’m hoping to avoid infections and illness by practicing impeccable hygiene and contact isolation for the next couple months. We’ll see how that goes… it seems everyone gets sinus infections when under chemo & radiation. I’m hoping to stay strong, enduring, and persistent throughout this… but I suspect I’ll rely heavily on Vicky to push me when I falter.
My Short Term Disability (STD) and Social Security Disability (SSD) begins Friday, February 15th. It’s expected to last 3 months or more (the duration of my stay at Hopkins).
The prospect of my chemo, radiation, and transplant is becoming a lot more real and imminent. I’m excited and anxious, but looking forward to beating this cancer! 💕✌
I kept a written cancer journal for much of 2018, but stopped during my brief remission and second tier of chemo. With Johns Hopkins fast approaching, I’m back to keeping a written journal of my stats, drugs, intake, bodily activities, exercise, and effects/experience.
IV Chemotherapy is difficult: physically demanding, exhausting, and with a list of side-effects depending on your mediport, oncology hygiene, and the effects of the chemotherapy drugs on your body. Rituximab, Cyclophosphamide, Doxorubicin, Vincristine, Prednisolone, and Cytarabine were all prescribed to me over 6 cycles from February 2018 through June 2018. They were each administered through a mediport placed in my chest, which I would receive in both in the oncology lab and at home using a portable IV pump.
Prior to my chemo, my wife and I took a couple of seminars on chemotherapy and intravenous (IV) line care. My wife(Vicky) is already a licensed and registered nurse with multiple certifications in critical care, advanced life support services, and drug administration, but we still attended the courses to see what we’d learn about cancer care and chemotherapy administration. I’d recommend all of the classes and seminars available to you if you’re about to go through the same. I can’t say I’m looking forward to Hickman Catheter Care next, but it’s necessary for my stay at Johns Hopkins. While I attended several classes and seminars on intravenous and intramuscular hypodermic needle injections, I still cannot self-administer but need my wife to do such things for me while I look away.
Since Vicky and I will be staying at Johns Hopkins for a while during the chemotherapy, radiation therapy, bone marrow transplant, and months of recovery, we’ve begun preparing ourselves for the long stay. We’re both bringing our laptops and tablets to keep us occupied for the months of hospitalization. I’ll be bringing my Kindle Oasis and Nintendo Switch in addition to my 17″ Razer Blade Pro 4K. While I won’t be able to play or practice on a piano keyboard, I can still use and play with FL Studio on my Razer Blade Pro. Vicky will be using her MacBook Pro heavily and reading on her iPad.
My oncologist and transplant coordinator tell me that for 2-3 months I’ll mostly be “out of it” and in little condition (or with little desire) to work remotely or do anything much. I really can’t imagine being that mentally and physically incapacitated for that long, even if with pain management and medications. Much of what you see on Facebook, on this blog, and on my wiki, are my efforts to prepare myself for keeping busy while away-from-home and stuck in a bed. I am truly hoping to keep myself mentally stimulated, engaged, and making the most of my downtime by reading, engineering, gaming, and learning mindful meditation.
Vicky and I have begun organizing, inventorying, and packing 3-months of supplies into bins with heavy-duty handcarts to move them. Once we’re done preparing, I’ll take pictures and post them along with our inventories and checklists. Maybe other cancer patients or caregivers might be able to make use of our lists and preparation? If nothing else, I’m impressed with how prepared and methodic we’re approaching this.
Of all that is going on, it is our two Shetland Sheepdogs, Kiyomi (清美) and Tōshirō (俊郎) that we’re going to miss the most. Our two beloved pups will be staying with close friends while we’re away from home. Thankfully Chris and Brad also have a loving family of Shelties, and our two will feel at home among their family. It is truly going to be difficult for Vicky and I to be away from our little family together with our two “fur-children.”
And so it goes… I hope to emerge on the other side of this healthier, wiser, and in complete remission. I hope this ersatz cancer journal and my rambling thoughts on how I dealt with and survived cancer will be use or hope to others?
Gallery (click any thumbnail to enlarge)
Administer IV Chemotherapy via Mediport
Home IV Chemotherapy via Mediport and Portable IV Pump
Family Bible & Rosary of Victoria & Kenneth Foreman
In the coming month, I have multiple bone biopsies, full-body PET scans, numerous blood tests and CT scans, and the various tests (pulmonary, cardiology) in preparation for heavy chemotherapy and whole body radiation therapy. While I am no stranger to chemotherapy, this will be a much higher dosage in combination with radiation as my oncology team tries to wipe out my cancer and immune system so I can receive a bone marrow transplant (BMT).
For the past year, I did several months of R-CHOP (also known as the Nordic Protocol) where I received heavy doses of chemotherapy via a mediport in my chest. Rituximab, Cyclophosphamide, Doxorubicin, Vincristine, Prednisolone, and Cytarabine were all prescribed to me over 6 cycles from February 2018 through June 2018.
After 6 cycles of R-CHOP, I was found to be in remission after verification using two full-body PET scans. I opted for three years of Rituxan (Rituximab) therapy as my maintenance chemo rather than undergoing a bone marrow transplant (BMT) since I thought it would be easier and less traumatic for me and my family. Little did I know that my remission wouldn’t even last three months, with my cancer returning before the end of the third month.
Family Bible & Rosary of Victoria & Kenneth Foreman
So I was started on 560mg/day of Imbruvica followed by 440mg/day of Venclexta as my second-line of daily chemotherapy since my cancer was no longer responding to Rituximab. The Imbruvica had little effect on me, about as benign and well-tolerated as Rituximab.
Venclexta was far harder on my body, with many of the same side-effects as what I experienced with R-CHOP earlier. By January 2019, I would need to have my blood drawn every 3-4 days in order to monitor my white blood cells (WBC), platelets, and Neutrophils. Almost once a week, I would need to stop my daily Venclexta and start daily Zarxio (bone marrow stimulant) to allow my WBC, platelets, and neutrophils to recover for 2-3 days before resuming Venclexta again.
And now I’m preparing for the massive amounts of chemotherapy and radiation so that I can receive a bone marrow transplant via a Hickman catheter while I receive my chemo prior using my chest mediport. I’ll be staying at Johns Hopkins Baltimore with my wife for 2-3 months during the procedure and recovery.
Everything you see here with my recent activities in reading, technology, toys, and more are all preparation for my time ahead. These are all things I wanted to do to keep my mind off of the ordeal my wife and I are experiencing, and to stay mentally engaged while struggling to overcome this cancer.
