Decisions, decisions…

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!!

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12 thoughts on “Decisions, decisions…

  1. Thank you for letting us get a view of your life and your trials. Knowing how you handle and get through each day I inspires me to do the same with my struggles. Like you said everyone has troubles they are just different but still real and we should look to our Father the Lord and each other for strength to get throgh them.

  2. Fervently praying that the Lord will give you serenity and peace in whatever decision is chosen. The only decision harder than this is deciding what things to cram in during your one day at Disney eh ?

    1. Haha you’re exactly right! I’m about 99.9% sure I’m gonna do the clinical trial at this point. Thank you for the info I’m trying to cram everything in my brain before I sign my life away lol

  3. Kim how do they decide which you get or is it a blind study and you don’t know which you will get? I am a nurse so any new things that are happening intrigue me. The trial definitely sounds like a good choice. Prayers that God will point you in the right direction and the peace knowing he is in control!! You are a great example of giving it all to God, I can learn from you as I tend to worry a lot instead of giving it to God!

    1. Hey Rochelle! They need to have all patients signed up by 2/7 and then they will randomly place everyone in their groups. I will know before I start which group I would be in. I also think it sounds good – I’m gonna go for it and just trust God to put me in the right group. Interferon can be effective in some people (they don’t know why though) so if I get stuck in that group, I’m trusting God will see me through and that it’ll be to my benefit. So hard sometimes to see His plan!! (:

      1. Very brave of you to make this decision to enroll for a clinical trial. Many of the treatments that are now standard of care for cancers in general could not become so unless there were patients brave enough to help advance medicine. Standard of care just means it’s the best treatment available and clinical trials are needed to find better treatments in cancer to help our future generations.
        The clinical trial sounds like what we called a non-inferiority study. In order for a medication to be approved as a treatment option in the future. It has to be shown that it is not worse than the currently approved treatment (interferon). Hopefully “ippy” will be better with fewer side effects.

        To answer Rochelle’s question. Generally randomization is done with a computer program that using an algorithm randomly places each enrolled patient into each group.

      2. Hey Alex! Sorry I didn’t respond til now, but thanks for clearing some stuff up! I am psyched that I’m getting the new drug. It’s not really bravery, it’s self-preservation! Lol! I have heard horror stories about interferon so I’m so thankful to not be getting it. Hopefully the new drug works better! Guess time will tell 🙂

  4. That 1st sentence didn’t make sense-how do they decide which of the 3 choices you get-low dose, high dose or interferon?

  5. We learned today about the new news. Kim, I am crying my heart out to Jesus for you – and your whole family.

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