First Post 7/21/16 – My story, my treatment team, and treatment plan

Hey everyone,

First I want to say thank you to everyone who has reached out thus far. It means so much to me to hear from all of you and is one of the reasons I am starting this blog.  I know I have not responded to many of your  texts, emails, and voice messages, but please know that they all have had a hugely positive impact on me and I really appreciate all of them. I am desperately trying to stay on top of my school work in addition to having to deal with all the other shit that comes with this diagnosis, so I have had very little free time, so I am truly sorry about that. I have recently been encouraged by the wonderful (am not actually being facetious for once) administration at school, to focus on my health and my family first and foremost. So that’s what I’m trying to do.

Okay, so if you haven’t been informed – I was diagnosed with Stage 3B metastatic malignant melanoma just over 3 weeks ago. This has all been a very convoluted and confusing process so If you are looking for the quick and dirty summary of the events leading up to my diagnosis and updates on future treatment please got to my TIMELINE page. This will be the quickest way to get caught up. If you are interested in my reasoning to start the blog or haven’t spoken to me for several years, or are just like super confused about who this “Melanie” bitch is, check out my About Me & Melanie page.

So Melanoma is an aggressive form of skin cancer, and stage 3B essentially means that it has metastasized or traveled to one of my lymph nodes that became swollen and palpable just below my armpit.

The story
Let’s rewind a bit to early spring 2016 – how this whole thing started: I felt a nodule just under my armpit that started very tiny but grew a bit over the next few months. I saw my PCP at Cambridge Health Alliance who referred me to a surgeon who had me get an ultrasound. My PCP was the only one who was suspicious (god-bless her soul). Everyone else told me it was probably nothing, that it was a cyst or a lipoma and that is was benign and removing it would only be for cosmetic reasons. It was not bothering me, but I had this bad feeling, and did not completely agree with their assessment. I am not one to get “cosmetic surgery” but I figured if it was growing it was eventually going to cause problems so I decided to have it removed and biopsied anyway.  Everyone was surprised to find out that the nodule they removed was a lymph node, which was pretty much taken over by cancerous cells that stained positive for several melanoma tumor markers. When I first got the diagnosis, both the surgeon and I were shocked. Melanoma usually starts as a visible lesion on the skin that is some shade of brown black, or pink, and rarely white or not visible. I did not have any obvious primary lesion, and while in about 5% of metastatic melanomas a primary lesion is never found, this was still rare and unusual. So we contacted my original dermatologist back home and after a lot of back and forth and getting our hopes up and then plummeting back down we finally got some answers…

REWIND to 2010 – I went to see my dermatologist for an itchy mole. The long and short of it was, they did a biopsy, sent it to a very well-respected (even in the eyes of Dana-Farber and MGH) dermatopathology lab and the diagnosis came back as a benign (non-cancerous) Spitz Nevus (fancy word for a certain type of mole). However, Spitz Nevi can sometimes act malignant, though it’s very rare – they did a wide excision and removed the whole mole from my back with clear margins, and thought this would be nothing I would ever think about or have to deal with again. HAHAHA

Fast forward back to July 2016 – I am getting opinions with oncologists and surgeons in Melanoma Clinics at both Dana-Farber (DFCI) and MGH.Well, the good news was luckily the lab still had my old tissue block from my back  so we sent it to MGH and DFCI so they could re-do the stains and analyze them themselves. The results are in and it turns out the original lab had misdiagnosed the mole on my back 6 years ago and it was actually an invasive malignant melanoma the whole time. So unbeknownst to anyone, Melanoma has been lurking around in my body for the past 6 years (even though they removed the original mole, cancer can do that because it’s a crazy ass bitch) and then showed up as a macrometastasis in my lymph node. Yes we want to strangle the original dermatopathologist.

GOOD NEWS – I should mention that I’ve had full body CT scans and a brain MRI, all of which came back normal, meaning there is NO evidence of cancer in any of my other organs thus far! I will continue getting scans periodically throughout my treatment to make sure of this.

My treatment team – We (my family and I) have decided to get treatment by the melanoma team at MGH. Dr. Lawrence (my Oncologist) is the director of the Melanoma clinic at MGH and my Surgeon, Dr. Cusack, trained the surgeon that I spoke to at DFCI. I will also be working with a group of awesome nurses who will be helping me along the way. Needless to say, I love my team and feel super confident that together we are going to beat the daylight out of Melanie (not a typo, my cancer has a name – if you are confused see About Me & Melanie).

My treatment Plan

Before I talk about treatment, I just want to be blunt about the prognosis of this shit and also why we are doing treatment. The prognosis is meh and the biggest issue with Melanoma is the high recurrence rate, and when it recurs, it’s likely to metastasize to other vital organs (like brain, liver, lungs, and bones). They say you can’t really be “cured” from Melanoma but can rather have “no evidence of disease.” According to the American Cancer Society, survival rates for stage 3B melanoma are 59% for the first 5 years and 43% for 10 years. My Oncologist thinks – and I agree, that my chances are much better than these numbers. For one I am young and strong, I’m a women (more men die from melanoma than women), and these percentages were calculated from studies done through 2008. My oncologist says my chances of melanoma coming back are 50%, but the adjuvant therapy should reduce this chance, and some of these new drugs bring about the promise of a “cure”! There is no fucking way Melanie is going to end my life early. I plan on living however long I damn well please, so that’s how I feel about that for starters.

Surgery – I am having outpatient surgery TOMORROW (friday 7/22)! It’s not a big deal at all. My doctors and I decided that we don’t need to do any lymph node biopsy, mapping, or removal because there is a high risk of long-term serious side-effects and that doing those invasive surgeries doesn’t really improve my prognosis significantly. So tomorrow I am just having two wide local excisions (WLE) where they remove skin and tissue from the old site on my back and from the new site under my arm.  They are doing this to try to get any remaining cancer cells out of there and take a wide excision so I will have some nice big scars to scare away all the children with. I will only be under IV sedation and local anesthesia so I should be going home tomorrow evening when they finish. My surgeon is awesome and offered to use nylon stitches, which are stronger than synthetic stitches so the healing time is quicker (2-3 weeks) and I can get back to tearin’ it up on the frisbee field before I start systemic treatment.

Systemic treatment -Immunotherapy –The second phase of treatment, is systemic treatment where I will be partaking in a clinical trial (yay science!)  If you are interested in reading in-depth about my particular clinical trial, it’s all posted for free online! Here’s a quick summary: I will be on some form of immunotherapy, which is different from chemotherapy, in that it essentially ramps up my own immune system to fight off (hopefully) the specific melanoma cancer cells. I won’t be starting immunotherapy for another 3-4 weeks after surgery, hopefully right after a Pro-Flight (an ultimate frisbee tournament I am playing in) and at the beginning of my 3 week break before the fall semester starts (but again don’t have a ton of control over when exactly we start). The clinical trial is randomized in that I won’t have control over which immunotherapy treatment that I get out of 2 drugs (actually 3 but we’ve ruled one out and i won’t bother trying to explain why).  I won’t know which drug I’m getting until 3-5 days before I start. What makes it really difficult is that there is a huge difference in terms of administration of the different drugs as well as their side effects so it makes long-term planning complicated.

Here’s my attempt at a really simple breakdown. One arm of the study is the standard treatment for stage 3B disease and involves taking a drug called  Interferon alfa 2b.  I will have to go to a clinic 5 days a week for a month for infusions for the induction  (high dose) phase. After that, the maintenance phase begins where I give myself subcutaneous injections (like diabetics do with insulin) 3x a week every 6 weeks for the rest of the year. The side effects of interferon, are more common but are less serious and are somewhat more predictable.  It has been described to me as having the flu off and on for a year. My oncologist assured me that they can titrate the dosage later on but the first month is most likely going to be rough -IF that’s the drug I get randomly assigned to. We have been told that interferon will help extend my life and reduce chances of recurrent metastases to 40%. There is another drug available in this standard treatment arm called Yervoy, which has been approved to treat stage 3 disease. However it is highly toxic and we were advised against it by Dr. Lawrence.
What we are hoping for is that I get the NEW experimental drug – called Keytruda (pembroluzimab). For this drug, I will only need to get IV infusions once every 3 weeks for the rest of the year. The side effects are more serious but are also way waaay less common. Many people have no side effects at all. Also you may have heard that former President Jimmy Carter was recently treated with Keytruda with disappearance of his brain and liver metastases.  Unfortunately, these drugs are so new that their long-term impacts on survival are still unknown. In the event that my cancer does metastasize, I will be able to drop out of the trial and start Keytruda. Either way, still feel pretty confident Melanie is gonna get its shit schwammed so hard.
My support system

Some of you are near, and some of you are far. Some of you I see regularly, and some of you I haven’t seen in many years. Some of you may have stumbled onto this page by accident. I want you all to know that I currently have a fantastic support system. My parents still live ~45 mins away and have been with me to every appointment. My mom is a retired LICSW and my dad is an ER physician (what better team of parents could I ask for?!). I also have a brother, Giovanni who lives close by as well. My Brother & sister-in-law (and niece, Talia) live in Chicago but I speak to them frequently. I am currently playing my 4th season with Boston Brute Squad and it’s like having 27 extremely close sisters. My team is aware and has been incredibly supportive. I am in my first of three years in an accelerated Nurse Practitioner program at MGH Institute of Health Professions and all my instructors and friends there have been very flexible and supportive as well. They administration is committed to working with me so that I will continue my school work during treatment and graduate on time. Less than a month ago I moved in with my boyfriend Aaron (many know of him as Lege) of almost 2 years and we are incredibly happy together. There is no other person I’d want by my side as I go through this. Luckily his parents are also local and have also been a loving support system for us as well. If you have any relationship with my parents or boyfriend, I ask that you don’t hesitate to reach out to them, as they are going through a very difficult time as well.

As for myself, after the shock subsided I just have had this overwhelming sense that I am going to kick the shit out of this uninvited bitch, Melanie. I am aware that the prognosis could be better, but I am staying super positive and feel extremely confident that this is just a little hiccup and in the end I am going to be okay, and I am going to beat this. I know you all know how competitive I am, so clearly, Melanie doesn’t stand a chance.

I will continue to post updates to this site and am adding other stuff as well. My next fun project is posting all the hilarious things my friends and family said about Melanie. Writing the blog is therapeutic for me in a way but I also hope to raise awareness about skin cancer and other issues of self-care and navigating our shitty health-care system and probably some other stuff I don’t even know about yet. Feel free to check out my Lessons and Tips page… it’s a work in progress right now.

I love you all, and I’ll keep you posted. Don’t hesitate to ask questions but just be aware my response rate will probably be somewhat variable. Feel free to send me an email at elana.schwam@gmail.com. I love you all, lets kick some Melanie Ass.

Fuck Cancer – Love Hard,
Schwam, Schwam-bomb, Schwaaaaaaam, Schwamy, Lanie, and Elana.
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4 thoughts on “First Post 7/21/16 – My story, my treatment team, and treatment plan

  1. Casey

    Thank you for your well-written and totally humorous explanation and post!!! You’re basically the baddest-ass-athlete I know and your kick-ass attitude and inner strength and fucking awesome sense of humor are obvious. Aaron is lucky, we are lucky, you’re awesome. Thanks for keeping us in the loop and for explaining the medical shit so plebs like me can follow along. Here’s to no evidence of cancer!!!! Fucking Melanie.

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  2. Belinda messersmith hodgson

    Fight on…. Melanie has NO chance. Your spirit and sense of humor are great! Wish I didn’t have to be educated but you write well. Your parents are awesome, I hope to meet you on cape one day. Love, hugs, strength, prayers and positivity from the cape cod cheerleaders! Go destroy that bitch!

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  3. Lauren Miller

    Hi Elana, Thanks for sharing your challenges with us. I’m just another person who’s thinking about you a lot, and who’s there for you and your parents in spirit and in any other way I can be. Keep kicking Melanie’s ass!

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  4. Pingback: Update #4 Stitches Removed & Clean Patho (8/4/16) | Schwaming Cancer

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