Hopefully most medical update posts won’t be this long, but I wanted to answer some of the questions people might have–skip to the bottom if you’re in a rush. For those of you just finding out about this whole cancer thing, I’ll do posts on how we got here soon.
On Thursday, I met with Dr. K, the Unicorn Oncologist, to make a final call on my treatment. After many blood tests and ten edgy days of waiting, I found out that I’m eligible for an immunotherapy clinical trial. I’ve decided to move forward with it, but here are the details of that decision.
I had two options: Six months of ABVD chemo, a combination that is very effective against HL but also very toxic. Or immunotherapy and then AVD chemo, which drops the most toxic drug from the cocktail. It’s still toxic, but the drug that would damage my lungs won’t be in there.
Quick and dirty explanation of the trial: Immunotherapy drugs are administered through infusions, like chemo. I’ll be on Pembrolizumab/Keytruda. This drug has been around for a while and has already been used for recurrences of HL. The trial is only testing how effective it is earlier on in combination with chemo, not its safety or efficacy with HL generally. Pembro tags cancer cells that lymphoma is particularly blind to, then puts your immune system into overdrive to attack those cells. The risk is that your immune system can also turn on your organs–the most common ones of concern are the pancreas and lungs, but also the thyroid. Since these reactions are detected only through symptoms, I wasn’t positive I wanted to do it. Organs getting attacked scares the hell out of me, and I’m not really trusting my body to much heavy lifting right now.
Dr.K didn’t push me toward one treatment or the other. She explained that since the tumor in my chest is classified as “bulky,” meaning it’s over 10 cm in size and covers more than 1/3 of my chest, it’s possible that chemo wouldn’t quite get it after one round. If it works as it should, the immunotherapy will significantly shrink the tumor first, and then chemo will have less to manage. I want to do everything I can to avoid the escalations beyond chemo (bone marrow transplants and radiation) so that was the final part of my decision.
Here’s the plan:
Monday, March 19th:
I get a port put in my chest in the morning (really ick about this) and start immunotherapy in the afternoon. My mom will be here, which is good since I seem to be the only person who has a strange opposite reaction to waking up from twilight sleep and I basically have a panic attack. Really fun for my nurses.
I’ll get an infusion every three weeks for three cycles, for a total of nine weeks. In what might be the only lucky timing in this cancer garbage, that gives me enough time to (almost/close enough) finish my last quarter of grad school.
Beyond the major side effects, I could have a range of fatigue, GI issues, fevers, swelling–pretty much lots of uncomfortable stuff. But I could also feel mostly okay, as some others in my small trial have felt so far. Earlier this week, I had an egg extraction for fertility preservation (more on this later- IVF is a lot, you guys). The hormones have made women feel a worse in the first round, but post-hormones they do better.
I thought I could pretty much live a normal life during these next 9 weeks, but it turns out that I still need to be pretty vigilant about germs the way I will for chemo: no travel, gym, grocery stores, crowded places, visitors who are sick, minimal contact with children, etc. But I can go to class, ideally wearing a mask. If I get a viral infection or anything that makes me spike a fever, it will mean a trip to the hospital.
May 21st: I start chemo, which will consist of two-week cycles for six months. And we can’t have our dog, Fanny, at our house. More on this later, but I think everyone knows someone who has done chemo and it’s not fun. My red and white blood cell count will essentially be zero, particularly without a third week of slight recovery between infusions, so I’ll need to extremely careful with germs (did I mention that we can’t have Fanny for six months?). I’ll basically be in our apartment as much as possible, and will be super tired and sick. All of the amazing cancer survivors I’ve talked to (seriously, this community is incredible) have said that once you figure out your routine, you learn how to get through it. But I can really only hear that from cancer survivors-from everyone else it’s kind of frustrating because I’m the one trapped on our couch for eight months, which is kind of my nightmare!
A Note on Responses:
So many people have been kind, generous, funny, and all around wonderful since this began. Thank you. Sometimes it feels like the only good thing to happen in a day is the influx of notes, cards, food, flowers, care packages, texts, and emails wishing us well. It makes an incredible difference-social support is real you guys! Please keep it coming, we need you. I can’t thank everyone enough, but promise to try and catch up on real, personalized thank you notes soon. But until then, thank you thank you thank you! Nico and I are deeply grateful for all of it. I’m sure there will be more posts of me gushing about the awesome things people have shared with us, because I really can’t get over it.
Also..if you have any stories of people who have been suddenly diagnosed with an illness, fought an illness for a long time, died from a sudden illness, or died suddenly at all, please don’t tell my husband, Nico. The strangest (and strangely common) response so far is how many people have started sharing terrible stories with Nico. I’m not talking about someone saying “hey, it was really hard when my dad was sick, I’m here for you.” That’s actually lovely. I’m talking random, unsolicited, detailed stories of tragedy from people he doesn’t know very well. It’s honestly a fascinating response, but I’d like to publicly ask that we all just say “Hey, I’m so sorry you have to go through this. How scary to have a wife with cancer. I’m thinking of you guys and would love to send you an organic but substantial Midwestern casserole/my family’s favorite comfort food.”
But even confusing responses are well-meaning. And we get that, so no matter what you say or do, thanks again for all the love.