My oncologist appointments always make me really nervous. Don’t get me wrong, my oncologist is very kind and I believe he really cares about his patients, it’s just that when I go to see him, big things start happening and big decisions get made – and today was no different. Today was the day we started discussing the five-letter word that strikes fear deep into my heart: chemo. Ugh. Just the sound of it makes me snarl a little and roll my eyes. So first thing this morning my mom and I headed off to Philly to discuss the thing that makes me wanna throw a full on temper tantrum in protest (but I didn’t, don’t worry. Even if I have picked up some great techniques from our 15 month old daughter).
So I sat in the waiting room rehearsing in my head the discussion I was going to have with him where I would politely decline the clinical trail that he had briefly mentioned on the phone last week and tell him I was ready for the interferon treatments. Interferon treatments would consist of IV infusions 5 days a week for 4 weeks, then shots I would give myself at home for a year. There is not, at this point, a better treatment available for people with stage 3 melanoma. Just so we can be clear, there is no great treatment for advanced stage melanoma. Interferon is simply the best they’ve got. To give you an idea of what it may be like for a year, here are a few gems pulled from the “likely side effects” column for this drug: flu-like symptoms, diarrhea, bone pain, body aches, headaches, fainting, gas (lol), hair loss, tremors, fatigue, and the list goes on to name 21 other things!! Then there’s the “less likely” column which includes, among 18 other things: suicidal thoughts, depression, aggressive reactions…wait, is this chemo or PMS? Amiright?? But the point is it’s not really anything to be thrilled about, especially since there isn’t amazing data to suggest it’s particularly effective at preventing recurrence. (This info is straight from a 30 page informational booklet typed up straight from my oncologist about the clinical trial.)
So anyway, we get taken back to the exam room, and in comes my doctor and a resident following him. My doctor gets right to business and asks if not treating this at all is an avenue that I’m interested in and I tell him no, that I absolutely want to treat. I want to be able to say I did everything possible.
So then he starts in about this clinical trial. At first I’m sitting there smugly thinking “yeah yeah, sell it, mister. I’m too smart to fall for some placebo junk!” But then he started explaining something completely doable. I will do my best to explain it, but unfortunately I will probably do a terrible job. Whatever, I’m not an oncologist (: So basically he starts talking about this drug called ipilimumab, the kids are calling it “yervoy” or “ippy”. My doctor kept saying “ippy” and I thought it was weird every single time. I will also call it that for two very good reasons: 1. The cool kids are doing it and 2. It’s shorter to write than yervoy.
So ippy has apparently been a drug used in stage 4 melanoma with some promising results. It has actually shrunk tumors in some patients and extended survival rates, again, for some. This drug is not yet approved for use in stage 3 patients, like myself, so that’s where they need people like me. You sign up for the trial and are placed in one of three groups: 1. Low dose ippy 2. High dose ippy 3. Interferon. That’s right! Number 3 is the very same treatment I would have gotten anyway if I choose not to do the study! Us stage 3-ers don’t have visible, shrinkable tumors so they are looking for long term data here.
Also, the treatments would only be 4 TIMES 3 weeks apart!!! Lemme tell you that sounds like a dream compared with the year of misery they have me prepped for with interferon.
I didn’t tell you the best part! The side effects in the “likely” column for ippy are: diarrhea, rash, and fatigue. That’s it! Now the diarrhea can potentially be life threatening (8 people on ippy died last time they did this clinical trial, three of which were from the diarrhea). Yolo!! Joking aside, we have some thinking and praying to do before my next visit with him next Tues (where I must give an answer).
Sorry this is a lot of info. Honestly, I feel like rolling the dice (or casting the lots??) and going for the trial. There is isn’t a clear winner here so I kinda want to throw my hands in the air and let God decide. It turns out best when we do that anyway, right? I am asking for your prayers too. For wisdom and for a clear answer on this. We have appreciated your help, articles, suggestions, etc. He gave me a clear ‘no’ to a few of them (emu oil, alkaline diet) but left a few others up to me (macrobiotic diet, fish oil, etc) so I wanna thank you guys and truly if you find anything and think we may be interested in – we are!! I will run anything by him (no shame) and will also do my own research. Thanks again, guys!!