After 23 days living in the hospital I’m happy to report my bone marrow transplant is looking good, and I’m free to continue recovering at home! I’m not going to sugar coat it: this ordeal was rough. However, I planned and prepared well for it, had a lot of fantastic support along the way, and I feel great about how well everything went! It couldn’t feel more amazing to finally be home again. The air conditioning, my couch, my TV, my pillow, my high-speed internet! It’s great to be back.
For those of you finding this page for the first time, I just finished an autologous bone marrow transplant to treat a condition where I make abnormal cancer-causing white blood cells. To do this some stem cells were collected and frozen, then strong chemotherapy was used to kill all of my bone marrow (where blood cells are made) to the point my body could no longer make any blood. During this time my white blood cell count went to zero, and I required blood infusions to keep me alive (thanks all you blood donors out there!). I was then infused with stem cells that were able to start growing new bone marrow. I have a brand new immune system now (just like when I was a baby) and it will continue to grow over the next few months, but I have to keep it safe by wearing a mask and limiting my exposure with other people while it matures.
I made an infographic to show my bloodwork during transplant. What, you didn’t think I’d try to data mine stuff from my procedure? In the bone marrow transplant world, stem cell infusion (transplant day) is what everything is centered around. I was infused with strong chemotherapy multiple times a day from days -6 to -1 to kill all my blood-producing bone marrow. Day zero I was infused with previously-collected stem cells, and celebrated a new birthday for my immune system. Since the old bone marrow was dead and not producing any white blood cells, my circulating blood cells slowly dropped off until they reached zero. Note that healthy adults have a white blood cell count of 5-10 (thousand/µL). It was a scary feeling on day +5 knowing that I had a white blood cell count of zero! The bone marrow transplant floor is largely sealed and isolated, visitation was is highly restricted, and I was on multiple antibiotics, antifungals, and antiviral medicines to get me through it. On day +9 I got the first hint that the transplant was working, as my white blood cells were just barely detectable. This confirmed that stem cells had matured into white-blood-cell-producing bone marrow (engraftment), and as my levels climbed I felt better and better.
Now that the core of my bone marrow transplant procedure is over, I don’t plan to continue updating this web page regularly. The procedure isn’t a sure bet at curing my disease, but it’s the best shot I’ve got, so I’m just going to wait it out and take the best care of my body I can and hope for the best. There’s a chance I could need additional treatment some day (CAR-T immunotherapy, an allogeneic bone marrow transplant from another person as a donor, or additional chemotherapy) but for now I’m taking it easy, and if this page remains dormant that means I’m living a normal life!
Thanks to all the friends and family that supported me during my treatments both locally and from afar. This experience was challenging but doable, and I attribute a lot of my success to your support and encouragement. I hope I won’t need any more serious treatments from here, but even if I do I know I’m prepared! The whole team at the UF Health Bone Marrow Transplant Unit was amazing too, and I couldn’t be more grateful and impressed with the awesome treatment I got along the way.
Today I received the stem cells which will become my new immune system! The infusion itself was relatively uneventful (a gravity-fed bag of cells flowed into my PICC line for about an hour) but it represents a big day for me and a shot at one day having a healthy immune system. After the infusion the transplant team came in and sang happy birthday to celebrate!
While I spent the last week in the hospital focused on getting through chemotherapy to gear up for this transplant day, the next few weeks are focused more on preventing infections and managing symptoms related to the continuing drop in my immune function as my white blood cell count approaches zero. Realizing that I’m going to be feeling a lot worse before I start feeling better again, I don’t plan on updating this website until near the end of my hospital stay when my numbers begin to elevate again (which fingers-crossed is a couple of weeks from now). For now I’m happy to report that things are looking good and I’m eager to continue on this arduous but exciting journey!
I just finished my last bag of pre-transplant chemotherapy! As of this morning the doctors said they are pleased with my numbers, and things are looking good so far. Even though the chemotherapy infusions stopped today, my blood counts will continue to drop (to near zero) over the next couple weeks during which I’ll be feeling really lousy. For now though, I feel surprisingly good (my medications are doing a great job of controlling the pain and nausea) and while my blood counts are high enough I’m even allowed to take occasional little walks around the hospital with a mask.
Medical details: Over the last week I had a tri-lumen PICC line added through my left brachial vein to allow simultaneous infusion of drugs and blood products over the upcoming weeks (I’ll likely be requiring blood and platelet transfusions). While I still have an infusion port on my chest, accessing it is an infection risk so the transplant team has chosen not to use it during my stay. The chemotherapy drugs I’ve been on over the last week are: carmustine, cytarabine, etoposide, and melphalan. Tomorrow is transplant day, where I’ll receive my previously-collected stem cells through my PICC line.
A few days ago I got the phone call I was hoping for – We are proceeding with a bone marrow transplant! An autologous bone marrow transplant is a procedure which may give me a chance at growing a new and healthy immune system (capable of fighting the cancer) from stem cells previously collected from my blood.
When I first started chemotherapy in August the hope was that it would suppress my lymphoma enough that I could safely proceed with the transplant. While the chemotherapy regimen used (CHOP) was highly effective at suppressing most of my cancer, a patch of highly active lymphoma near my left arm did not respond to the chemotherapy (it actually grew during treatment!) and the bone marrow transplant (initially scheduled for January) was cancelled.
Several weeks of daily radiation treatment was ordered that focused on the active cancer that remained. Radiation treatment turned out to be highly effective at suppressing the lymphoma at that site, but a CT taken near the end of treatment raised the suspicion that the lymphoma was coming back elsewhere in my chest (a situation which would take a bone marrow transplant off the table again). A decision was made to take a few weeks off of treatment then follow-up with a new CT to see if the cancer was still growing. For the last few weeks I didn’t know if I would be proceeding with a bone marrow transplant, starting-up a different chemotherapy regimen (GDP), or pursuing immunotherapy (CAR T). I had the follow-up CT a few days ago and the lymph nodes in my chest have stabilized, so we are proceeding with transplant. I waited to update this web page until I knew with confidence what the next step of my treatment was going to be.
The last few weeks were a nice vacation from cancer treatment. I enjoyed putting a little bit of time back into some of the activities that I had to put down when I began treatment last year (programming, electronics, and YouTube). I even grew back a little hair! I know the transplant process (which starts next Wednesday) will be rough (with much higher doses of chemotherapy than before), but I’m excited to be moving forward with treatment. My scheduled transplant day (when I’ll actually receive the stem cells which will grow my new immune system) is March 27, 2019. I hope I’ll be able to share a positive update sometime around then!
I didn’t have an out-of-body experience today, but my blood did! This morning a catheter was placed in my left internal jugular vein with two tubes to allow continuous withdraw and replacement of blood as it circulated through an apheresis machine to filter-out and collect white blood cells (leukapheresis). This procedure harvests hematopoietic stem cells which can be frozen and later used used to repopulate my bone marrow after it is destroyed by strong chemotherapy as part of my autologous bone marrow transplant. Hopefully the cells they collected today will help to create a healthy immune system in the future! The picture below shows me a little over half way through the six-hour collection procedure, with the bag of collected cells hanging on the upper-right.
I finished chemotherapy (for now) and begin daily radiation treatment next week. While the chemotherapy did an excellent job at suppressing most of the lymphoma around my body, a pocket of highly active disease remains under my left arm. Below is a PET CT indicating the extent of the lymphoma before and after CHOP chemotherapy. Note that the heart, submandibular glands, and lingual tonsils are all active at rest so it is normal for them to appear dark in images like this, but dark lymph nodes depict disease.
The current plan is to undergo radiation treatment every day for five weeks. I anticipate the short-term side effects from radiation treatment will be less severe than those I had during the last few months of chemotherapy, so I’m looking forward to the break! If radiation treatment is successful in getting this difficult site under control, and if the rest of the cancer doesn’t come back between now and then, I’ll proceed with a bone marrow transplant some time around March. At that time they’ll start me on a much higher dose of chemotherapy to kill as much of my bone marrow as they can, then repopulate my immune system with the stem cells they collected today. If all goes well, the immune system that grows from those stem cells will be healthier than the one I have today.
My hair will start growing again now that I’ve stopped chemotherapy. It’s surprising how used to it I got over the last few months! Although the chemo they will give me during my bone marrow transplant will cause my hair to fall out again, I probably won’t be that squeaky-scalped again for a couple months.
I decided a while back that I’d shave my hair off as soon as I first noticed it falling out, and that day has come! Almost every day before I go to sleep I give it a little tug and think, “still in there!”, but this morning I noticed it falling out in the shower. By lunch I was getting annoyed as hair kept landing on my keyboard at work. My coworker Jeff offered to shave it off at his place after work, and I couldn’t get it off fast enough!
My hair will start growing back a few months after chemotherapy ends, but I don’t think I’ll mind it being gone too much in the mean time. I’ve had several years to consider that “one day” I’ll be walking around without hair for a little while, so the fact that the day has finally come isn’t much of a surprise. For now I’m happy enough to save money at the barber and have a simpler morning routine.
The treatment plan for the next few few months is to get additional rounds of chemotherapy every three weeks. This website will probably be dormant for the next few months while I undergo these infusions, and I will start updating it again when I know more about the bone marrow transplant I will probably be having.
I started my first round of chemotherapy today! I expect to feel pretty lousy for the first few days after each infusion (the next one being 3 weeks from now), but I’m very happy that treatment has begun.
The chemotherapy regimen I am undergoing is called CHOP, an acronym for the combination of drugs used: The C (cyclophosphamide) is an alkylating antineoplastic agent which damages DNA by promoting the formation of interstrand and intrastrand crosslinkages leading to cell death. The H (hydroxydaunorubicin, or doxorubicin) is another DNA damaging drug which inserts itself between DNA bases and prevents the progression of topoisomerase II (which relaxes super-coils of DNA so it can be read or replicated), leading to cell death. The O (Oncovin, or Vincristine) binds to tubulin (the primary molecule comprising the cytoskeleton). During metaphase (when all the chromosomes are lined up and about to separate) the separation of chromosomes into two daughter cells is prevented, and an apoptotic pathway is activated killing the cell. Finally, P (prednisone) is a glucocorticoid immunosuppressive and anti-inflammatory drug commonly used alongside antineoplastic agents to reduce the likelihood of allergic reactions and to alleviate some of their side effects. Although these drugs seem like blunt instruments (broad spectrum DNA and cytoskeleton-damaging chemicals), rapidly growing cells (such as the tumors being targeted by this chemotherapy) are preferentially targeted for damage, resulting in the efficacy of this treatment. Other fast-growing cell types are damaged as the result of these drugs, one of which live within hair follicles. As such I expect to begin losing my hair at some point over the next couple of weeks.
I got my port placed today! A port is a medical appliance surgically implanted beneath the skin which is attached to a a tube which goes into a large blood vessel (a central venous catheter, CVC). Instead of poking my arms to draw blood, deliver chemotherapy medication, or inject IV contrast dye during medical imaging, my port can be accessed instead.
Update (2018-12-13): A chest X-ray taken today displays my port quite nicely! The white objects under my opposite arm are staple-like sutures used during my last surgical biopsy.
Update (2018-12-14): A CT taken today shows my port nicely too! This CT series was re-sliced, maximum projected, then windowed to maximize bone visibility and hide soft tissue. The port is visible on the left side of the image, but the contrast dye used during the CT is also visible coming through an IV line. If you look closely you can see where the IV line turns into a needle, enters my arm, fills the veins, and clears once it enters my heart.
In July 2018, after 6 years of careful observation while my disease rested in an indolent state, the lymphoma kicked into gear and started growing rapidly. I experienced an abnormal increase in generalized lymphadenopathy (beyond the level I had come to get used to as normal), and a CT revealed thoracic and axial lymph nodes which were significantly larger than typical. A PET CT revealed high metabolic activity in many chains of lymph nodes, indicating the disease had shifted in its behavior from indolent to aggressive.
On one hand it’s disappointing that the disease began progressing. On the other, it’s now in a state where it is more likely to respond to treatment. In August 2018 the decision was made to begin interventional treatment: chemotherapy to attack the actively-growing lymphoma, followed by an autologous stem cell transplant (treatment which includes very high doses of chemotherapy, total-body radiation, and a type of bone marrow transplant where I am both the donor and recipient) which may help prevent its recurrence in the future.
My first realization that something was changing in the status of my disease came while filming a YouTube video about FTDI microchips. I noticed the cervical lymph nodes on my left side were swollen, took a selfie to assess what they looked like, then kept shooting the video with my body turned in such a way as to minimize the notability of my left neck. For the record here’s the picture, and here’s the video. That picture was taken May 29 2018, and at my next doctor visit was 8 days later. The oncologist was concerned about the progression and ordered additional imaging (a CT) to get a better idea of what may be changing.
It’s been a few years since I’ve written about this, so here’s the summary of where I’ve been and where I am now: In April 2012 I had some alarming symptoms (lymphadenopathy, weight loss, night sweats) and visited an oncologist for the first time. This picture was taken just before my first doctor visit, and I’m in scrubs because I was a dental student at the time (I hadn’t started the DMD/PhD program yet). After several blood tests and two surgical biopsies I was eventually diagnosed with non-Hodgkin’s lymphoma (NHL). More specifically, Lennert’s Lymphoma, a rare lymphoepithelioid variant of peripheral T-cell lymphoma in the not otherwise specified category T-cell lymphomas.
Of interest is one of K. Lennert’s early publications from 1986 (there are earlier ones, but this one is open-access). Its title describes condition as “a monoclonal proliferation of helper T cells“, and in its text further characterizes it as “special variant of Hodgkin’s disease characterized by a high percentage of epithelioid cells and rarely containing the Reed-Sternberg cells characteristic of classical Hodgkin’s disease.”
In April 2012 I had some alarming symptoms and visited an oncologist for the first time. Symptoms included lymphadenopathy, weight loss, night sweats. This picture was taken just before my first doctor visit, and I’m in scrubs because I was a dental student at the time (I hadn’t started the DMD/PhD program yet). After several blood tests and two surgical biopsies I was eventually diagnosed with non-Hodgkin’s lymphoma (NHL). More specifically, Lennert’s Lymphoma, a rare lymphoepithelioid variant of peripheral T-cell lymphoma in the not otherwise specified category T-cell lymphomas.
I found one of K. Lennert’s early publications from 1986 especially interesting. There are earlier publications, but this one is open-access. Its title describes condition as “a monoclonal proliferation of helper T cells“, and in its text further characterizes it as “special variant of Hodgkin’s disease characterized by a high percentage of epithelioid cells and rarely containing the Reed-Sternberg cells characteristic of classical Hodgkin’s disease.”