Chemo: A Primer
Updated: Jan 4
I've been getting a lot of questions about my chemotherapy. This was not a topic that I knew much about before this, uh, adventure.
I, like everyone else, got the majority of my medical knowledge through watching ER. For example, I used to know that 100% of medical procedures were started by one doctor shouting "10cc's of Lidocaine, STAT!", and you can give a tracheostomy with a pen, but only if you're in an elevator that's stuck between floors.
Chemo didn't come up often on the show -- probably because it's tough to resolve cancer into a 44-minute story line -- so my knowledge was limited. I assumed it was a single drug that made you vomit frequently.
So now that I'm basically an expert in all things chemo related, here's what I've learned:
What is it?
Chemotherapy is a class of drugs that targets high growth cells. Cancer cells with unchecked growth can be killed by chemo. There are a bunch of different drugs in the chemo class but I have only taken Cytarabine and Daunarubicin in my two courses.
For my third course, they're going to give me a pair of drugs called Fludarabine and Busulfan. It's affectionately known as "Flu-Bu". How is it given?
My chemo comes as a liquid in an IV bag. I get my chemo through some semi-permanent ports in my arm called a PICC line.
(Above: Matt's PICC lines in his left arm.)
The first course of chemo was called "Induction" and was 3 straight days of Daunarubicin and 7 days of Cytarabine. My second course was called "Consolidation" and used 3-hour bags of higher dose Cytarabine given 6 times over 6 days. How are the side effects?
Chemo has a reputation for making you nauseous and causing your hair to fall out. Both are true.
Because I was so sick during the Induction course, I was very drugged up and remember little. I don't remember throwing up at all. About a week after, my chest and head hair were starting to accumulate on my bed and pillow.
After we got to San Diego nearly all of my hair was gone within a week, save a few blonde stragglers. My beard stopped growing as well.
(Above: Matt's hair -- before and after chemo.)
This past week my head hair turned darker -- but hasn't grown in length or quantity -- and my beard stubble got noticeable. I shaved once with an electric razor and it hasn't budged. I don't know if it was starting to grow back naturally or if it was stimulated by the steroids I was taking. Since the chemo concentration was stronger during my Consolidation course (the "second round") than my Induction course, I had to battle nausea this time. The nausea was triggered by the chemical taste of the chemo which can really linger, and it can come back hours later if I eat certain foods or get dehydrated. Having a full stomach or sucking on mints or hard candy have been good ways to overcome the taste.
Some cancer patients have a different port system than my PICC line. They have ports in their chest instead of their arms. During our thrice weekly blood lab appointments, there is inevitably a guy with a chest port getting a bag of chemo as an out-patient. Those guys comment that the chemo taste is really strong because of their ports and swear by mints and candy.
(Above: Matt's new candy of choice.)
The other side effects I've experienced are chemo-brain and peeing incessantly. Chemo-brain is the affectionate description of chemo patients who seem completely lucid during conversations yet can't remember anything afterward. It also comes in the form of a general mental fogginess and difficulty remembering things that used to come very easily. As someone who takes pride in his memory, it was initially disconcerting but Dani takes really detailed notes in our meetings with doctors and everyone else is pretty quick to forgive me for being forgetful. Because chemo is super toxic (the nurses put on extra gloves and body protection whenever they handle it and they dispose of the empty bags in special containers), the body really wants to get rid of it. This means a LOT of peeing. When it was being administered in the hospital, I had to pee in graduated plastic containers so the nurses could track my output and make sure that the hydrating IV fluids plus the chemo were getting expelled. However, even days after finishing and getting out of the hospital, I'm still peeping every half hour day and night. It makes getting good sleep a challenge but I'd rather have the chemo out of my body.
(Above: Enjoying the fresh air between our hospital stays.)
I have lucked out in not experiencing much in the way of side effects. Because chemo targets fast turnover cells, it can wreak havoc in your mouth, digestive track, and gut. These often manifest as open sores and can make life miserable.
As I said, I have gotten lucky so far.
How are you responding to the chemo?
Great! My induction course was really effective at wiping out my leukemic cells.
Periodically, the doctors will push a needle into the back of my pelvis and do a bone marrow biopsy. They do the pelvis because it's the biggest bone marrow producing bone and because there are two humps at your lower back that are shallow and easy to get to. The biopsy involves extracting some bone, some spongy marrow and some of the fluid inside, and it gives the doctors a sample so they can count the different cell types that are hanging out in the marrow.
All of our blood cells are produced there. People with leukemia have a disruption in the blood cell production so instead of having, say, 25% white blood cells there might be 5% white blood cells and 20% mutated leukemic cells. My last two biopsies have shown very low leukemic cell counts. This is very important for the transplant because I need to have an essentially empty immune system -- devoid of my own cells good or bad -- at the time of transplant. The doctors are happy, so we're taking our cue from them.
The downside to this "house cleaning" is that my other blood cells (red, white, platelets) get wiped out in the process.
(Above and below: Matt getting a blood transfusion yesterday.)
(Above: Matt getting a platelet transfusion today.)
It takes about 7-10 days from the time chemo starts for my blood counts to start to dip and they usually bottom out 7-14 days from the end of the course. I can't feel it happening, but once my counts get low I suddenly feel like I have no energy. Even laying on the couch and watching a full day of NFL games is a struggle. But I'm no quitter.
(Above: Matt watching "American" football in the hospital this morning and trying to explain to me why the guy who just made the most recent play is an idiot.)
When my counts drop below a certain threshold, I'm considered "neutropenic" which means that I'm severly immunocompromised (I have no immune system). If I cut my foot and it gets infected, there won't be any redness or pus, just a fever. Likewise, if I catch a cold, the only indicator will be a fever. My body won't produce the normal symptoms that help to fight the infection, the cold, etc, so a fever is the only warning. Since my body can't fight off germs/infections on its own, medical protocols require that I be admitted to the hospital right away if I spike a fever of 100.5 or higher.
If you want to know how this works out, please read my wife's last post.
(Above: The happy, healthy life we'll be back to soon!)