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Home » My Health Updates » Goodbye IL-15, Hello Inlyta

Goodbye IL-15, Hello Inlyta

Posted by on June 9, 2012 in My Health Updates - 14 Comments
Inlyta

So I was kicked out of another clinical trial Tuesday. I’m like the troubled teen who keeps getting expelled, bouncing from school to school. Except instead of getting tossed for doing drugs, I get tossed for not doing enough of them. Or not doing them correctly perhaps. Get this kid out of here. We keep giving him drugs and he keeps acting normal. It’s embarrassing.

It wasn’t entirely a surprise. As I noted in the previous blog, Dr. Conlon was concerned about some new mets developing in the lungs and the worsening cough and back pain. He had noted that we’d need to take a “hard look” at our options if the CT scan showed between 10 and 15 percent growth, and we had about 14 percent. If I had pushed the matter, I think we could have done another cycle; all of us agreed, however, that we needed to go on the attack to beat back some of the recent progression. IL-15 is a promising development in immunotherapy research, but its promise, I believe, is in the potential for a long-term response. We need some immediate results.

Enter Inlyta.

We made our way back to Johns Hopkins and Dr. Hammers, my primary oncologist, for a consult Thursday. It was a familiar routine. Driving through Baltimore, Dena hit her brakes repeatedly. “It wouldn’t be Baltimore if some idiot didn’t walk out into the street in front of my car every few minutes.” We stepped out of the elevator onto the main floor of the Weinberg Building (Hopkins’ oncology wing) with its hideous purple walls. There must be some kind of Newtonian law that the better the care a hospital provides, the worse its decor. Paint isn’t something that usually draws my attention at a hospital, but the purple and turquoise colors are jolting enough to make me suspicious that they are used to induce cardiac arrest as a way to drum up more business.

Before seeing Dr. Hammers we ran into old friends from the MDX-1106 trial — Sir Robert, who was my personal phlebotomist (cool, huh?) and Fabulous Alice, who was my trial nurse and who continues to shepherd us through our tribulations undergoing treatments at Hopkins. It was like we were getting the band back together.

Dr. Hammers was in agreement with Dr. Dena’s treatment plan — the latest TKI drug on the market: Inlyta. From everything I can tell, Inlyta is Sutent under a different name. They should’ve called it Sutlyta. It works the same way, the side effects are very similar and you don’t need an IV line because it comes in a convenient little pill. The funny thing is that Inlyta works a little better than Sutent, but the FDA approved it as a second-line therapy. This means you have to go on Sutent (or another drug) and fail it before you can get Inlyta. Luckily, I’ve failed almost all of the therapies so I had no problem getting a prescription. I started my first dose yesterday.

After meeting with Dr. Hammers we met with Lynn, a nurse from Hopkins’ palliative care division. Dena worked with Alice to arrange it, and I will admit I was reluctant at first. I associated palliative care with Dr. Kevorkian and buckets of morphine. Not that I have anything against morphine, mind you; I’ve become quite a connoisseur of opiates. But I prefer to get my narcotics off the street. Dena, however, was right. Let me repeat this, for Dena’s enjoyment, as she will not hear it often: She was right, and I was wrong. Palliative care is not end-of-life care; it is the art of easing the discomfort of disease symptoms and treatment side effects — regardless of the stage of disease. A good oncology team should always have a palliative care nurse as part of its makeup.

Lynn is now a permanent member of my team. She did not come into the room armed with arsenic, obscene needles, firearms or even aspirin. She came in and discussed my symptoms with me and developed a plan to mitigate them — in the short term and, if I have my way, for years to come. For the cough, I’ll continue with albuterol and benzonatate (Tessalon Perles), only I’ll do so on a regular preventative schedule rather than on an as-needed schedule as I was previously doing. She also added codeine to the mix. Score another opiate, baby. Ocycodone. Percocet. Codeine. My medicine cabinet is a dream heist target for high school kids.

We discussed my appetite, or lack of it. Well, I do get hungry but at odd times. And I don’t eat a ton when I am hungry. Which, evidently, is frowned upon in the world of oncology. Lynn complained about Maryland’s lack of a medical marijuana law. Which is just as well. I’m not sure how it would go over during client lunches. What are you having? The salmon — excellent choice. And you, sir? Oh, I’m sorry, we don’t serve ganja here. Those hookahs are for decoration only. Despite the fact that my medical records from NCI referred to me as “anorexic,” my weight has been pretty steady. I’ve lost maybe twenty pounds over the course of the last three-plus years, but nothing significant of late. The biggest problem has been financial — having to buy a completely new wardrobe. I’ve been trying to bring back the classic Zoot Suit but have so far failed.

So the plan now is pretty simple: Don’t lose any more weight. The prescription is the best part: Eat whatever the hell I want, whenever I want. I can eat cupcakes and ice cream all day, every day? Uh, yes, if necessary. Woo-hoo!

During my next visit, we’ll meet with Lynn to talk about any new side effects from the Inlyta and how to mitigate any side effects from radiation therapy as well.

Which brings me to my last update. To go after the larger mets behind my clavicle and in my left lung, we’ll likely undergo radiation therapy to try to shrink them down to a point where they are causing less trouble. At this point I can’t tell you much about what that will entail, as I’ve never done radiation other than CT scans and TSA security checkpoints. We are trying to schedule a consult with the radiation oncologist now, and I’ll provide more details once I know more.

Until then, I’ll see you at the Stone Cold Creamery.

;

  • Kimberlygaughan

    Hello Chrus and Dina,

    I have been following you for a while know. My
    Husband of 33 years passed in 2010 from the same
    Kidney cancer as you. We followed some of the same therapies
    As Chris except for the trial ones. Chris, my husband’s cancer was also in the lungs
    And with his treatment, his timers in his lungs started to shrink. But,
    It spread to his bones in his upper back. At this point, because of pain,
    He started radiation. He went down hill from there. Please be careful with the radiation.
    It’s going to make you very sick. The radiation dr told us he would be fine but it was the worst side affects to date. Caused him to get pnumonia, which was just one of the affects he had.
    Just please be careful with the radiation…

    God bless,

    Kim

  • Mike Venable

    I didn’t post a comment on your last entry, because I didn’t have any words. You are the bravest son-of-a-bitch I know, Chris. I find myself mentally moving in and out of changing places with you — If I were walking in your shoes. We both have great women as partners in this life. Good children. Supportive friends and co-workers. I am one of your many brothers and sisters. In my case, you and Dena have become a daily part of my life, as I pray for you. Virtual relationships are positively weirder than hell. But real, nevertheless.
    You are doing just the right thing by writing your way through. Your words are leaving a well-lit trail of electronic breadcrumbs for those of coming along behind you. You inspire us with your wit and the clever turn of a phrase.

  • Chris Fegles

    Chris, you make me smile, laugh out loud (for those of you that don’t understand that those last three little words – I’m LOL) and wanting more of your wickedly twisted sense of humor!!!

    Dena – you have it in writing “She was right, and I was wrong.”, oh how I long for those same words from my husband!  Enjoy it, celebrate it and have it printed on a plaque for all to read!

    . . . and Chris you have been granted permission for my drug of choice – ICE CREAM :)

  • Chris Fegles

    Ooops, should have read – those of you that don’t understand those last three little words

  • Jplantin

    You continue to inspire and educate those of us who share this struggle with you. Through it all your continued sense of humor is amazing. We think of you often and pray that Inlyta is the one. Hope the side effects don’t beat you up. Ice cream or drugs… Tough choice.
    Best always to you and Dena. Janet

  • Debbie

    I LOVE reading your posts! Thank you .

  • Beccisaporito

    Chris, sending much love and praying daily! Becci Saporito

  • Margaret and Chuck Barker

    Full speed ahead in your new direction!  Awesome that you and Dena maintain your “never ever give up” attitude.  We all benefit from your story and fortitude.  We love you all. Praying for you  daily.  We believe in you…

  • Maryalice Haest

    Thinking of you and praying that this new course will get the results we want!

  • Mary Pattison

    Onward and upward, with your attitude you WILL find the answer.

  • Suzi B

    Amen to the palliative care nurse, she will be a huge benefit to both you and Dena.  Also, a great way to keep your calories up is to have Boost milk shakes.  Try the boost with extra protein…..it’s not Ben and Jerry’s but will definitely help.  Also, Carnation makes a calorie booster, ask your oncologist for a script or talk to a nutritionist about it. I believe it packs a whopping 800 calories in 2 oz.  And seriously, if you need weed, I may be a nurse, but I live in Central Florida for heaven’s sake (home care nurse in Sanford), I can find a hook up!!! LOL ;)

    Be blessed Chris and Dena!!!

  • Kim Larkin

    Hi Chris and Dena – very thorough post and appreciate the update. I am praying this new therapy starts kicking some kidney cancer a** very soon! I’m at Duke getting toxic myself and thinking of you all. Just saw John – the nurse you love so much – and gave him the link to your site. Take care of yourselves! XOXO, Kim

  • D_thorpe06

    Chris & Dena:
    Keeping you and family in my prayers daily.
    Diana Ludlow

  • Patricia Alana

    You are both awesome!  Aloha!

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