In contrast to the standard ABVD chemo I received after my initial diagnosis of Hodgkin Lymphoma three years ago, the salvage chemo regimen I’m receiving currently is much newer and less widely used (mostly because dealing with recurrent Hodgkin Lymphoma is much less common than dealing with an initial presentation). I figured it would be useful to describe what treatment is like — both for people who may end up receiving this regimen in the future and for all the friends and family who reach out and ask how chemo is going.

Days 1 & 2— INFUSION TIME

I show up to the hospital three weeks after the previous treatment for my first of two days of infusions for the upcoming cycle (each cycle is three weeks). The first place I go is to the infusion center lab. They access my chest port with a needle, which looks a lot more painful than it is (especially after the topical anesthetic cream I apply before going in), and draw labs. I then move to an infusion room which can be either private or in a more communal area, just depending on what’s available. Fluids and anti-nausea premedications are administered first which can take up to an hour. Then it’s chemo time.

Now is probably an appropriate time for a brief aside regarding the two drugs I’m receiving. The regimen is a fascinating juxtaposition of classic cytotoxic chemotherapy and newer more targeted therapies. Bendamustine is a member of the nitrogen mustards — drugs that are derived from the very same mustard gas that was used as a chemical warfare agent back in World War I. Alkylating agents such as bendamustine cause cell death via damage to DNA. Cells that replicate quickly are more prone to DNA damage, thus rapidly dividing cancer cells are the most susceptible to cytotoxic chemotherapy. However, any other cells that turn over quickly are also going to take a hit — for instance the cells that line the stomach and intestines.

Conversely brentuximab vedotin is a monoclonal antibody which binds to the CD-30 receptor that is expressed, among other places, on the cancer cells in Hodgkin Lymphoma. Bound to the monoclonal antibody is a cytotoxic agent (vedotin). The idea is that the treatment is more specifically targeted to cancer cells while simultaneously lessening the systemic collateral damage.

Now back to treatment. The brentuximab is infused first over 30 minutes on day 1. While the first treatment went off without a hitch I developed a mild infusion reaction — flushing and scratchiness in the back of my throat — following the second infusion. Such reactions are apparently quite common with Brentuximab, especially after the second cycle, though true anaphylaxis is not. In practice it meant the infusion was paused, I got even more benadryl (which left me woozy the rest of the day) and then after about 30 minutes, the infusion was completed without further issue.

Following the brentuximab infusion, I get a 10 minute infusion of bendamustine. During the infusion I try and keep ice in my mouth — a holdover from ABVD chemotherapy — to try and cause the blood vessels in my mouth to constrict and thus shunt the poison away from my oral mucosa in hopes of avoiding any sort of mouth sores.

When I get home from day 1, I’m tired but not yet feeling the full wrath of chemotherapy. My sense of taste is usually intact, and while my appetite isn’t ravenous, I’m able to eat at least a decent amount of food. I usually feel up to a short walk on the treadmill or around the apartment complex — though the benadryl I got this past cycle kept me firmly planted on the couch this last go round.

Day 2 is a shorter trip to the infusion center. I don’t have to get labs drawn but I still get fluids and the antinausea medications before the chemotherapy. By day two merely the metallic taste of saline going in makes me a bit nauseated — the infamous “anticipatory nausea” that I naively thought I was too resilient for back in the ABVD days. Once the fluids are done I get my second 10 minute infusion of bendamustine — there’s nothing like coming back for seconds of mustard gas derivative.

By the time I get home the grossness has set in. My sense of taste is off, my appetite is quickly diminishing, I feel wiped out, and my stomach and intestines are beginning to burn. Speaking of burning, if I’m out in the direct sun for more than seconds I turn bright red. As I go to bed on day 2 the grossness has set in…

Days 3 & 4 — THE GROSSNESS

The next two days are the worst. I wake up and if I’m lucky I can get down a bowl of organic brand cinnamon toast crunch cereal with almond milk. If I’m really lucky I might have a banana too. My gastrointestinal tract is burning, but not erupting and then cooling down in the way it would with a viral gastroenteritis but rather smoldering constantly all day.

Merely staying hydrated is a challenge. Water is barely potable thanks to a combination of my messed up sense of taste and the fact that my stomach turns every time water hits it. Gatorade isn’t much better and each treatment I’m forced to play “what flavor should I ruin for the foreseeable future?”

Most of the day I lie on the couch and try to distract myself with video games or movies. My parents and Brooke help immensely, but I’m sure its frustrating for them on these days as there really isn’t much they can do aside from keep me company and encourage at least some food and fluid intake.

If I can muster up the motivation, slowly jogging a mile on the apartment’s treadmill or walking around the apartment complex in the evening tends to help me feel a bit better, though it can come at the tradeoffs of upset stomach and leg cramps. My physical strength actually isn’t as sapped as you might expect, it’s mostly the nausea/GI discomfort that’s limiting.

Ultimately the biggest part of days 3 and 4 are getting through them. At this point I know I’ll turn the corner in a week or less after chemo, but even still it’s difficult not to fall into the cycle of ruminating on having to do this all again for at least one more cycle and then face the higher dose chemotherapy that comes with stem cell transplant.