Update #5 – Treatment Assignment (8/24/16)

So sorry it’s been a few weeks since I last posted but I needed every waking moment to saddle up and focus on school. More on that later…

Clinical Trial Update
So I got the call I had been waiting for, surprisingly a day earlier than expected. Hanukkah did not come early this year and my birthday is still too close to Christmas for anyone to care. I found out yesterday that I have been randomized to the standard treatment arm, which means I will be on Interferon for the next year. If you recall from my earlier posts (which I don’t expect you to), I had been hoping to get randomized to the experimental arm – for the new drug Keytruda. Keytruda has had really promising results in stage 4 patients and also comes along with very few side effects, that would have fit well into my lifestyle. Interferon has a lot of side effects, though not too serious, but will definitely take a bunch of the wind out of my normally very active sails. From the beginning Lege and I had been mentally preparing for the worst, which in my opinion was to get randomized to interferon. So when the news came, it didn’t sting nearly as much as I thought it would (for now anyway).

Interferon Treatment Plan
So starting Monday (Aug 29th) I will begin the induction phase of treatment with Interferon – getting infusions 5 days a week for a month. They are outpatient treatments, meaning I will go to MGH, get the infusion and then go home after. Aside from the first day where they will do some blood work and some other tests, the infusions only take about 20 minutes (if they can find a working vein without having to stick me 3 times). I’ll certainly know more after the first week. After the month of infusions, I will transition to  the maintenance phase of treatment where I just have to give myself SubQ injections (shots in my fatty tissue) 3x a week for the rest of the year. Good thing I don’t have a fear of needles.

The good
While interferon isn’t a curative treatment, it has been shown to delay recurrence of Melanoma. In other words, it’s better than nothing! My oncologist told me that it will reduce the chance of it coming back to about 40% for me, so here’s hoping. While interferon does have a lot of side effects, almost all of them are reversible and will go away when treatment stops. My oncologist also said he can titrate the dosage down to reduce side effects while still keeping it at therapeutic levels (still beating up melanie). I am also quite a bit relieved about one aspect of not getting Keytruda. Though the chance of having side effect is much much less with Keytruda, the potential side effects are very serious and usually not reversible. Autoimmune side effects (where your own immune system starts attacking healthy cells of other organs) are no joke (think hepatitis, pneumonitis, kidney necrosis, and a non-functioning thyroid for example). Often patients have to take high-dose steroids (glucocorticoids) to diminish auto-immune effects and let me tell ya, ever since I learned about Cushing’s Disease, I have been terrified of systemic steroids (prednisone, dexamethasone). So hurray for that! The other good thing about not getting randomized to keytruda is that further down the road, if/when Melanie does somehow show her disgusting stupid face again, Keytruda will be an option for me. Hopefully by then they will have more results from clinical trials to really know the long-term benefits. Also I just want to mention that if Melanie does metastasize to any of my other organs during treatment with interferon, I can drop out of the clinical trial and just get Keytruda, or whatever else my oncologist thinks will work for me. Also, as a health professional and general science nerd, I am happy to be able to be part of a clinical trial and to contribute to medical knowledge to benefit future cancer patients. In addition, being in a clinical trial means I will be followed more closely by a whole team of health professionals than if I was just taking the standard treatment alone.

The Bad
Interferon has a lot of side effects that are experienced universally by all patients. These include flu-like symptoms such as fever, chills, muscle aches, extreme fatigue, malaise, nausea, etc. My oncologist said it will be worse towards the end of the induction phase and will likely prevent me from participating in Nationals with Brute Squad. This is a crushing blow to me. So much of my strength comes from my team and when I am playing my heart out with them, it is one of the few times I forget about cancer. I have “kind of” accepted this as truth but as you might have guessed, I plan to bring my cleats to Chicago come September 29th.

Life & Other Updates.
My scars have healed up nicely and I mostly don’t think about them unless someone slaps me really hard on my back. The itching is pretty much gone so I have retired my handy-dandy soft-bristled tooth brush.

I had finals for grad school last week and prior to that had a long stream of papers, exams, and case studies that I needed to get done before finals started. Previously it has been very difficult for me to stay focused on school work. So many of the things we are learning in school spark questions about melanoma and other cancers, which throws my curiosity into overdrive. I would end up in these research rabbit holes until Lege would come home and snap me out of my trance. Anyway, I was able to shake my perpetual ADD and actually get my work done. I’m very surprised and happy to announce that I was still able to pull off A-‘s in both of my classes this semester!

We don’t waste a minute of vacation so immediately following finals I drove to Salisbury, MA with Lege where we got to spend a few days with his extended family in a beautiful place close to Salisbury Beach. I filled up on the olympic events I had missed while studying for finals and we participated in our own little olympic event and simultaneously amused a local soccer team as we timed ourselves sprinting the 100 meters.

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Last weekend I flew to PDX for the weekend to participate in the ProFlight Finale Tournament with Brute Squad. It was unbearably hot there. 100 degrees outside and 150 degrees on the turf. Our feet were literally on fire and with 4 games on saturday and no breaks, I was just trying to survive. Sunday was way more tolerable. We came in 2nd, losing to Seattle again, but I have faith our TEAM is gonna get revenge at the big show. I felt better than ever on Sunday and played well based on my own standards while some of my teammates told me I had played better than they’d ever see me play. YAAAAAASSSSS. We took a team picture in the amazing tanks that my friend Bitterman designed. The support that I’ve received from my TEAM is amazing, and I am so lucky to have them on my side. See the featured image of this post.

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Schwam tanks – Front: Image of me dressing like one of my idols – Hip-hop Taylor Swift. Back: “This Cancer is gonna get Schwam’d! Me in the middle wearing my other idol, tupac.

Currently I am on vacation with my family at my parents cape house in Brewster, MA. I’ve already had lobster twice so you know it’s going well.  It’s always good to see my Fam but It’s nice spending time with my bro, my sister-in-law, and my 20 month old niece Talia who we don’t get to see too often since they live in Chicago. Talia is extremely loquacious and happy. She is a mini schwambomb in training and we talk about poo-poo butts a lot so the training has been successful so far. Right now I am trying to do as many activities as possible, knowing that come monday, everything is going to be a little bit harder.

As always, thank you all for your continued support. I appreciate all the texts, calls, and emails and am hoping to find time to get back to some of you when I start treatment. I am eager to start treatment so I can continue murder-balling Melanie for good.

Fuck Cancer & Love Hard

schwambomb, schwamy, Elana.

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3 thoughts on “Update #5 – Treatment Assignment (8/24/16)

  1. Andi and Larry Carlini

    As always, Elana, you amaze us with your strength and humor and wonderful style. We wish you all the luck in the world as you start your treatment in the quest to beat the shit out of Melanie!

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  2. lowensteinamy

    My sweet Schwam Bomb- you are one incredible young woman. You are my inspiration. I’m sorry you didn’t get the treatment you wanted and we were all praying for but with your perseverance Melanie will be crushed! Your Team will be there for you as you will be for them, so glad you have them and a special hug and kiss to A2, one very special young man. Love you Lani❤️ With all my hear and soul here for you 24/7- Mame

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  3. Chelsea

    You are gonna crush on Monday Schwaaaaaam! Enjoy that Lobstahhhh!

    ps. Missing that picture is the “blue schwam day” in my life- worst day of my life 🙂

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