On Hodgkin’s Lymphoma and the Brentuximab Clinical Trial: The Story of a Very Lucky, Unlucky 21-year-old Student

‘You have Cancer.’

Those 3 words are enough to turn anyone’s life upside down. Especially if you’re a (relatively) healthy 21 year old student who has always strived for karma to be on his good side. And yet, Cancer was in the cards that I was dealt.

Cancer

In May of 2014, I was, totally by coincidence, diagnosed with stage I Hodgkin’s lymphoma. I was stunned. Speechless. What the fuck did /I/ ever do to deserve this?? I’ve been a good guy, most of the time at least. I got good grades, was pretty nice and friendly to people, I recycle when I can, and even volunteered in my community. But I couldn’t let myself get hung up on the ‘why’ aspect of everything, after all, it doesn’t matter why it happened anymore, it just matters that it happened. Now I need to deal with it.

Immediate Effects

Getting healthy was, quite obviously, my first priority. That really sweet summer internship I scored in Charleston for really good pay? Drinking smoking and partying? Having an overall quite badass summer? Yeah, that wasn’t happening anymore.

You make plans and the universe laughs.

For the duration of the summer, I moved back to my parents’ house so they’d be able to support me, keep an eye on me and help me where needed.

Not the ideal summer plans for my senior summer. But it needed to be done. I was going to beat this sickness and become a better person because of it.

Chemo

I went through 4 treatments of ABVD, each spaced two weeks apart. The first treatment was rough, to say the least. Besides feeling physically weak (and not to mention emotionally so as well, though that wasn’t a side effect of the chemo itself), I got really bad mouth sores. To the point where I couldn’t eat solid foods or even swallow without pain. My parents made mashed potatoes and crushed up meatballs specifically so I’d be able to eat something. I felt helpless. When was the last time my parents had to make ‘food smoothies’ for me to be able to eat? Not for a long time…

During the first treatment, I also started getting a fever while staying in my apartment one night. While undergoing chemo, they tell you to seriously watch out for fevers and the like, since your white blood cell counts are really low and a fever could actually cause some damage. After a long and scary night, a few phone calls to the on call doctor, some impromptu medication, a ride through the city with the windows down with a good friend, and a delicious peanut butter-fudge-extra fudge milkshake, I felt better.

Another kind of weird effect I had during chemo was random hiccup attacks. Out of the blue I’d start hiccuping and not be able to stop for hours at a time. While it wasn’t painful, it was a tiny bit annoying and drew unnecessary attention to myself when I just wanted to stay in the shadows.

Because of these effects, for my next 3 treatments I was given a Neulasta shot the day after chemo. Neulasta literally makes your bones produce more white blood cells. This in and of itself blew my mind. It was also nice because the next 3 treatments went much more smoothly with no real hiccups (pun not intended).

I didn’t throw up a single time while on chemo.

It’s also worth noting that I chose to not get a port operation. Usually, cancer patients will have a port surgically inserted near their shoulder; this makes it very easy to deliver the chemo drugs in a quick and efficient manner without causing pain to your veins. Since we had only spoken of a few treatments and were optimistic about the whole situation, I decided to rough it out and not use a port. This was sometimes a bit tricky, the nurse couldn’t always catch my vein right, and the drugs caused soreness in my veins and arms. But in the end of the day, I saved myself a procedure. I was lucky.

Clinical Trail – Brentuximab

Before this, a quick breakdown of usual Cancer treatment: Chemotherapy works by attacking all of the fast growing cells in your body, therefore by killing most of the large Cancer clusters you have. That is then usually followed up with radiation treatment to kill any remaining Cancer cells to try and prevent the disease from relapsing.

Now to the clinical trial: While talking to the doctors about treatment options, they mentioned and recommended a clinical trial going on at the hospital with a drug called Brentuximab. This drug would follow chemotherapy and replace radiation treatment. Brentuximab was FDA approved for relapse Hodgkin’s patients. Meaning, if you got Hodgkin’s a second time, you would be able to take Brentuximab to fight it. This clinical trial was for virgin Hodgkin’s. The theory is that if this drug works well for relapse patients, hopefully it can do some (well, a lot) of damage to the remaining Cancer cells in people who have gotten Hodgkin’s for the first time. This seemed like quite a good option for me. Sparing me radiation treatment is a huge win since it has been shown to not always be effective and a lot of times would come back to haunt you later on in life. Especially if you get radiation treatment at the age of 21. Also, because this was a clinical trial, it was all paid for (when I say all I mean the clinical trial portion, not chemo). There were some slight differences from regular treatments such as another PET scan, regular follow ups, its own set of side effects, and of course knowing that this is just a trial. But at the end of the day, I went ahead with this option. Time will tell if this was the right decision or not, but right now I think it was the right decision.

Fertility

Before starting chemo, the doctors informed me that this may potentially harm my fertility. As a 21 year old male in his prime, this was frightening news.

I went to a sperm bank and deposited thrice, just to be safe. There’s still a good chance that I will be able to reproduce naturally in the future (they say give it at least 5 years after complete remission). But having had to go through that and deposit sperm in a bank because my fertility was in jeopardy was scary.

Hair

Yeah, it’s gonna happen. I was a bit optimistic for a while since my hair didn’t start falling out until after I got the second treatment. But then it happened. I lost hair on my head, my beard and pubic region.

This was actually quite a big hit for me. Before my diagnosis, I was known as the guy with the ponytail. I had always and since I can remember had taken pride in my luscious and flow-y hair. The ponytail and beard combo also looked quite good on me (call me biased…). Needless to say, that had to go and I didn’t have a say in the matter.

It was embarrassing. It was sad. It put a spotlight on me when I didn’t want it. I felt like I lost a big part of my identity. And yet, what can one do? I embraced it and tried to play it off when people mentioned it. ‘Oh yeah, summer got hot so I just shaved it all off.’

I also got a lot of double takes. People didn’t recognize me anymore without my defining feature. It was also interesting to see which people did recognize me immediately versus people who had to take a hard look and still didn’t recognize me. I’d like to think that told me something about certain people.

After the fact when I could look at things in a more positive light, I like to say that this all just happened because someone upstairs wanted me to get a haircut.

Remission

On July 25th, I was in full remission. I had had cancer for 3 months. I was really lucky. Due to the timing of everything, I didn’t even miss any school. My grandmother has a saying that goes: ‘even with bad luck, you need good luck.’

Brentuximab Treatments

I wasn’t done though. After being in remission, I needed to go through the Brentuximab treatments. There were 6 of these, spaced 3 weeks apart each. My last treatment was on December 23rd. Even then I wasn’t done. I had to wait 2 months to do another PET scan to make sure I’m in the clear. Which I was.

Support / Socialness-ness

You will feel alone. You will feel isolated. Be sure to get the support you think you need (and probably more than what you think you need) to help get you through this.

My family was an invaluable resource during this time. Not only did they help me where needed (drove me to treatments, sat through chemo sessions, prepared me healthy food, etc), but the fact that they were just there for me was nice. I even had a few relatives come from abroad to visit and help me through. One of my uncles (that lives abroad) kept on texting me jokes and funny pictures. This was one of the more thoughtful things anyone did for me at the time. Not only did it show that he was thinking about me and cared for me, but he also managed to put a smile on my face.

My friends were there, though a bit less than usual and a bit less than I would’ve liked, I think. They came over sometimes and hung out a bit and checked in on me every now and then. Honestly, I don’t even know /how/ they could’ve been more helpful, I just wish they were. At the same time, I couldn’t really blame them. Their friend got Cancer. What are they supposed to say or do in that situation? It was new territory for them as well as myself. I think moreso than anything else I was a bit angry at the world and jealous of them. They kept on keeping on. And I couldn’t go on with my usual, normal routine. Things were different for me now. I found myself even pushing a lot of people away from me during this time. It was all very confusing for me.

There are lots of support groups and events you can go to to meet people in similar situations or people that have gone through what I was going through. I went to one Hodgkin’s fertility event and that’s it. The one event was alright, it was informative but I didn’t quite connect with anyone there, mostly by choice. These groups and events weren’t really quite for me; I’m more of an introvert and much preferred to handle things on my own and get lost in thought questioning the irony of the universe. While I can’t say from experience, I’m sure these support groups are unbelievably helpful if that’s your thing.

While I did try to tackle most things on my own and act like a big boy who didn’t need help or sympathy from anyone, my family and friends being there for me was unbelievably helpful. I wouldn’t have gone through what I did as easily as I did if it weren’t for all of them.

For family of people with cancer: I think you’re gonna know how to go about handling a situation like this. Make your family member know that you’re there for them, I think that’s the most important thing. My family made clear that I was never alone throughout the whole process. This was invaluable.

For friends of people with cancer: I think it’s really important to your friend to let them know that you’re there for them. I very much did like the check-in texts, a phone call may have been nice as well. My friends coming to pick me up and grab lunch together was thoughtful and made me feel like I was still part of the crew and not much has changed; that was nice. I also was recently shown the following ’empathy cards’ (http://www.upworthy.com/8-nontraditional-empathy-cards-that-are-unlike-any-youve-ever-seen-theyre-perfect?c=ufb2), I think I very much would have liked to have received something like this.

Other Thoughts

Look, this is not going to be an easy experience. Physically, mentally, and emotionally. But I think the most important thing is to simply take it one step at a time and to try and think optimistically through it all. Having a good source of support (read above) I think is also very important, even if you may not think so at the time or don’t necessarily take advantage of it constantly.

Aftermath

It was not a fun journey. But it made me stronger. It made me who I am today. I learned a lot about myself. I learned a lot about the people who were close to me.

My journey still isn’t over. I need to go to annual follow up scans for the next 5 years to make sure I’m still Cancer-free and healthy. But I made it to the other side, and I’m thankful for that and for the bit of luck I had along the way.

3 thoughts on “On Hodgkin’s Lymphoma and the Brentuximab Clinical Trial: The Story of a Very Lucky, Unlucky 21-year-old Student”

  1. Tomeri, that is a great blog and I think it’s great you’re sharing your story. Very nicely written.
    I love you, Mom

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