chapter….um… six? i think?

So remember , like, a month ago, when I wrote a blog entry about novelty? About how nothing about my cancer was really new anymore, so I had less fuel to write? Yeah, well, about a week later, I got my new. New tumors. New growth in my old tumors. New treatment decisions. New fears.  Fucking jinxes.

Here’s what is going down… On Monday, I will be staring on a new clinical trial that requires me to be hospitalized for two separate weeks this summer. The trial is called ALKS-4230, and it uses an updated form of IL-2 therapy. IL-2 (Interleukin 2) is a protein that activates the immune system. It basically tricks your immune system into thinking your body is in sepsis, so it goes into overdrive. Back in the stone age of cancer treatment (before 2011), IL-2 was one of the few alternatives to chemotherapy for melanoma patients. It had a very low response rate (I believe 7%) and was very toxic.

Apparently this updated version of IL-2 is less toxic; the reason I will be inpatient for the first two rounds of treatment is so that they can monitor me very closely and treat any side effects as they crop up. This is the first phase one trial I’ve been on… the drugs I was on in the past had already been proven for safety, and I was in the group on which they were testing for efficacy. The drugs I’m about to go on – and this is where it gets fun – have only been tested in animals thus far. Actually, that’s not true… I’m in the 4th human cohort. Each cohort is given a certain dose of the drug, and if people tolerate it, a new group is recruited and the dose is increased. So I’m pretty much a guinea pig, which I’m perfectly fine with for two reasons.

Reason one. I’ve exhausted most of my options. Sorry, I know it sounds bleak, but it’s the truth. I’ve done immunotherapy twice, two different targeted therapy combos, tumor bombs. They all worked for a brief period, until my cancer stopped responding. I guess maybe because I’m a smart girl, my cancer is smart, too.  We do have a back-up plan – another clinical trial that’s about to begin – in case this doesn’t work. But we’re not going to think about that now, because we going to focus our power of positivity on this IL-2 thing working.

This brings me to: Reason two. For every disease that’s ever been cured, someone has been the first one to receive the cure.  Why not me? Why not this drug? If we weren’t living during THE renaissance of cancer treatment, this would be an idealistic way to think. But because of the progress that’s being made every day, it’s just optimistic, and possibly realistic.  Also, even though there’s not “A CURE” for cancer, there are actually many cures for cancer. Every cancer is unique. A particular therapy acts as a cure for one person, a certain drug combination works for someone else. Maybe my cure already exists. Maybe we just haven’t landed on it yet.

Anywayyyyyyyy, that’s pretty much what I know right now. I got a port placed this week. It’s basically a permanent line placed in the vein in my neck, which is attached to a little plastic disc that they inserted under the skin on my chest. Most people opt for a port because they use it instead of having to find veins in your arm every time you get blood work or an infusion or a scan. I did not want one. I can’t explain why other than just finding it icky. That said, I know it will make next week easier, considering they have to take blood 5X per day for the study.

Last week, I bit the bullet and bought a new computer, as I am going to use the forced confinement to do some writing and editing… if I can. Which, I think, based on what I’ve heard from my oncology team (there’s no data but anecdotally patients are tolerating these drugs pretty well), I should be alert and able to do some creative damage from my hospital room. Speaking of which…

I have decided that I would prefer not to have ANY visitors during my first week of treatment. If you think that this may not apply to you because you are one of my nearest and dearest… sorry, but it does. I am hoping that those close to me will understand and respect this decision – I put a lot of thought into making it. I will post an update very soon, but for the next week, I’d just really like some privacy to deal with both the heavy emotions and physical adjustments of moving into this new chapter.

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27 Responses to chapter….um… six? i think?

  1. Joanne Cosenza says:

    Hi Jenn, Wishing you all the best with this new treatment. I pray for you every day .Maybe this is your cure. Keep your chin up girl. Much love to you. Joanne

    Like

  2. Sandra Porter says:

    This isn’t what we want to hear but thank goodness there are these new treatments available. We’ll be thinking about you Jen. Now get writing!Loveya.

    Liked by 1 person

  3. Terri says:

    Prayers and positive thoughts for you Jen. Terri

    Like

  4. Yes are so right – EVERY disease has been incurable at some point in history and those that turned into a cure are because of some person raising their hand. Bravo, you trail blazer! And great job at setting the “no visitor” boundary. I’ve attempted to dance around this before (à la “I’m not up for visitors today.”) only for a surprise visit the following day. Telling people ahead of time is a smart move. Infinite good vibes being sent your way!

    Liked by 1 person

  5. sclazarus says:

    I’m feeling your positivity and sending it 10X back at you. Love you, Susan

    Liked by 1 person

  6. Diana says:

    Praying it works and praying that you have no side effects… Big hugs and kisses. D-

    Liked by 1 person

  7. Ed Goble says:

    I’m sending positive thoughts and energy out into the universe for you. Know that you are loved.Ed

    Liked by 1 person

  8. Cha Cha says:

    My brave warrior. Everyday I watch you fight I become stronger in my faith that you will beat this thing. I don’t know if you know this, but I don’t need to visit you because I have you in my thoughts all the time with beautiful positive thoughts that try to protect you. So they will be visiting and not me. But of course if you change your mind I can be there in a flash. I love you.

    Liked by 1 person

  9. Annemarie Beattie says:

    Best wishes and much respect to you .

    Like

  10. mmwm says:

    Yes, heavy emotions. Hope, fear, terror, anxiety, curiosity, probably lots of things I don’t imagine because I’m not you. Sending love.

    Like

  11. Sheryl Gina says:

    Wishing you the best with your new treatment
    Always thinking of you
    And sending positive thoughts !

    Liked by 1 person

  12. Rita Rios says:

    HI Jen, well you know I pray for you and you know I love you now I’m wishing and hoping you will be the first person to be cured. Try to relax and do your reading and writing while you are getting the treatments. Time will fly and you will be back with the family. I’m wishing you the best of luck and I always remember you in my prayers. Lighting a candle at church for you every week. ❤️🙏😘

    Liked by 1 person

  13. Mike E. says:

    Love and miss you Jen! Just know that we are sending our strength and love… The next blog will be brighter! Love you love you.

    Liked by 1 person

  14. Hilful says:

    Cancer is a rotten sneaky bitch..just sayin… love you!

    Liked by 1 person

  15. Eli Toast says:

    Head down Jen. Thoughts and love coming from the Bu. (this is Sam by the way, Eli Toast is my blogging sobriquet, which you prolly knew anyway)

    Liked by 1 person

  16. Diane Cohen says:

    Sending love and prayers ❤️🙏🏻

    Sent from my iPad

    >

    Liked by 1 person

  17. Barbara Mosca says:

    Your new trial being the 4th is better than being the 1st, so that’s good news! My positive chi is being sent to you.

    Liked by 1 person

  18. Nuala says:

    All my love xx

    Liked by 1 person

  19. Judith lamberti says:

    Sending lots of prayers and hugs.such a strong girl.🌺❤️🌺❤️🌺❤️

    Liked by 1 person

  20. Tom Decker says:

    Ram slam slam and fuck cancer! Use the time to write and think. Sending light and healing to you!

    Liked by 1 person

  21. Harold says:

    You’re
    my superhero. Kicking CANTcer’s ass. Who do you want to play u in the movie?

    Liked by 1 person

  22. Matt says:

    Jen! Just read this. Sorry to read about the new developments. I’m sending loads of positive energy and thoughts your direction. Also thanks for your comments. I appreciate it. There’s a bond in thought process that cancer patients share. How’s the port working out? It definitely makes life easier. Matt

    Like

  23. John F says:

    Hi Jen – I’m a Bladder Cancer patient entering my third year on Nivolumab. I started reading your blog before I even knew what immunology was, and your story is a reminder that any of us could find ourselves recurring at any time. What you’re doing by chronicling this is a genuinely self-giving thing- a service to all of us navigating these new uncharted waters. It’s hard to visualize that other than getting cancer at a young age, we have lucked out with our timing as it applies to this medical renaissance (I love your use of that word to describe today’s oncologic breakthroughs). I’ll be following and keeping my hopes high for you and with regards to your optimism: you’re right about it all – You will be the one at the forefront of a cure while we’re spot-welded and given new combinations to keep us going until we fade into old age, bored and perfectly alive until we fall and break a hip or something utterly predictable like that.

    Liked by 1 person

  24. gr8ful says:

    Jen, I found your blog through the Cure magazine piece. As a 3 time cancer survivor, I find your blog to be so incredibly well thought out and well written. It is a gift that you have and thank you for sharing it.
    You are so right when you say that each cancer is unique and finding the right treatment is key. There is an amazing MD in CA that has dedicated his life to that pursuit. I have personally met several patient’s whom his testing has resulted in curing. One was an advanced ovarian cancer and the other a breast cancer. His lab tests the cancer vs several unique combinations of chemotherapies to hopefully find the elusive treatment that will actually kill the cancer cells. I’m probably not doing the technique justice, but that is the general idea. His name is Robert Nagourney, MD and his company is Rational Therapeutics. If you google him, you should be able to find all the information you need.
    Best of luck to you in this journey. Sending prayers for your miracle.

    Liked by 1 person

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