Proceeding with BMT

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!

Stem Cell Collection Day

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.

Scott Has a New Look

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.

First Round of Chemotherapy

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.

Port Placed Today

I got my port placed today!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.

 

PET CT Reveals Progression

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.

A Change in Symptoms (6 years later)

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. 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.

First Diagnosis

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.