IL-15: A new immunotherapy trial for kidney cancer patients

April 18, 2012

Crossposted from the Kidney Cancer Chronicles.

 

The National onal Institutes of Health is not to be trifled with. Folks there take security seriously. Arriving at the campus –  and yes it is a campus, about the size of a small liberal arts college tucked away somewhere in the Midwest – you will be wanded, metal detected, possibly patted down and, if you are particularly shady-looking, likely stripsearched, interrogated and psychologically abused. They have good reason, I suppose. They have people like me locked away in there. Or they will.

Oh, yes. About that. I have moved on from Johns Hopkins (at least temporarily) to the National Cancer Institute, which is part of the NIH campus located in Bethesda, Maryland. I generally try to avoid Maryland for fear of excessive taxes and intrusive governments. However, I survived Baltimore; perhaps I will survive Montgomery County, too, though I think it can be more vicious than the gang-riddled streets surrounding Johns Hopkins. (Seriously, local cops shut down and fined some kids operating a lemonade stand on their front lawn during the U.S. Open last year because they didn’t have a license.)

I find myself wandering about, sometimes lost, in the NIH compound because Dena and I decided to start a new treatment plan, a very phase-oney Phase I trial at NCI called IL-15. It was time. Readers of my blog were getting cranky. The story of Sutent was getting boring: You take your pills every day, deal with a certain set of side effects, and check in with your oncology team and get a CT scan every three months or so. After a while, there wasn’t much to write about. And since I acquired cancer as a means to find interesting things to write about, Sutent became an unsustainable proposition. Plus, it wasn’t working.

So we have opted for IL-15, a low-dose cousin if IL-2. The upside is that only twelve people have ever tried this treatment, so there’s not a lot of you out there who have much information on it. About twelve I guess. So I’ll have plenty to report. The downside is that only twelve people have ever tried this treatment, so there’s not a lot of data to say whether or not it might work. When we asked the doctor about the chances of it working, he more or less shrugged. Then gave me some lettuce and sugar water, and a little cage with an exercise wheel.

The trial starts Monday, and I will be hospitalized for two weeks with daily infusions. In preparation, I have been undergoing testing this week to confirm that I qualify – that my heart is still beating, that my lungs are still inflating, that my ass still works.

Oh, wait, that sounds a little weird.

Earlier this week I underwent a bone marrow biopsy. My friends in the leukemia community can appreciate this, indeed are likely unimpressed by my experience. They have marrow sucked from more painful places than I. Nonetheless, until you undergo the procedure the idea of it can be a little unnerving, and my imagination is … well, spirited.

I was escorted into a minor surgical area and placed in a room with a lot of machines that go ping, told to disrobe and lie face down on the examining table. If you’ve ever been to prison, you can understand my hesitation. (Not that I’ve been to prison, but I have watched a lot of Law & Order.) Then I was injected with some local anesthesia in the lower portion of the small of my back. Dena began her regular routine of shouting warnings at the doctors and nurses: Watch it, he passes out … needles make him squirm like a little girl … dude, are you really going to stick him with that? Once the local had settled into place, they pulled out some kind of contraption and began screwing it into my lower back. I couldn’t see (being face down and all), but it felt kind of like they had placed an old-fashioned coffee grinder on my back and were corkscrewing it down to churn out some fine espresso. It stung a little, I suppose, but the disturbing part was just feeling the tool spiraling into the bone. The doc would say, “Okay, you’re going to feel a little pressure,” and then he’d start cranking. It’s like when you go to the dentist and they give you some local anesthesia but leave you awake and you feel them scraping and pulling at your teeth. However, I walked away unmaimed.

I know elderly women and young children who have undergone far more invasive bone marrow procedures, so I am hard pressed (get it, hard pressed? I’ll be here all week) to complain about my little encounter. And yet, that is what I do, and I do it well. So relax and have an espresso – on me. Literally. (Okay, not really literally.)

13 Responses to “IL-15: A new immunotherapy trial for kidney cancer patients”

  1. May 16, 2012 at 11:01 pm, betty said:

    is your kidney cancer genetic? If so, is it classed as BIRT HOGGE DUBE SYNDROME? I live in Winnipeg, MB Canada. Can you e mail your reply to me and let me know how you are doing? I see my kidney doc June 11th. I hope to hear from you before then. thks, Bettie

    Reply

    • July 16, 2012 at 7:16 pm, Eileen eve said:

      I had surgery oct. 2111 and jan2012 on kidneys . Removed 3 from left and 7 tumors from right .
      They call it the BHD syndrome. Will have DNA testing this month (July 2012 ). (My son had collapse of his left lung in march 2012 could be another symptom of this BHD syndrome in his genes gotten from me maybe ? So Anxious to have the DNA testing )
      Healing from the major surgery ,the incision and all ,right now. They tell me it hadn’t spread so no treatment I have to take. Just will watch for the turmors to drop again they tell which will happen.
      I return end of month (July) to see if leftkidney is still working after the surgery removing about 15%. The right kidney is working great after 10% removed.
      So my outlook right now is good. Prayers to you as well …

      Reply

  2. May 16, 2012 at 11:02 pm, betty said:

    plse e mail me at betmur@mts.net re: Birth Hogge Dube syndrome

    Reply

  3. December 03, 2012 at 11:29 pm, Jan said:

    IL-2I have been offered IL 2 twice and declined taking it. I have MRCC. I was considered cured with my original diagnosis was 2003. And reaccured Fall of 2006. I have been on numerous therapies. Mycancer seems is growing. As I am running out of drugs to try. Presently on Inlyta and am titrating it slowly. Sutent made me very ill where I almost met my maker.which was three years ago. Iam humbled by those of u that are taking IL -2. I really am too scared too

    Reply

    • March 11, 2013 at 1:46 am, Jan said:

      I feel like I was reading a out myself. Diagram 1203 with a kidney removed. It returned Sept of 2009I have been on several agents and presently am on Inlyta. SUTENT took me to my knees and nearly my life. I hope inlyta works better than Sutent. Now they say Sutent simply did not work. I was offerred IL 2. I declined it as I am devorced I would ha e had to travel for the treatment. I. Could not physically or emotionally deal with. I. Would not let. My my so. Go thrum it

      Reply

    • March 28, 2013 at 7:57 am, Holly Fantz said:

      My Dad is on Sutent presently & has lived almost 14 months on it…
      However, the RCC has metastised everywhere, and
      I dont have any idea. What to expect!! He has lived
      Nearly 5 months longer than they said he would, &
      I have No Clue how long or what’s ahead. I am all
      alone caring for him,&it seems that his docter(s)
      Cannot bring themselves to be frank with me. I left
      Everything in New Jersry 1 year and 2 months ago,
      But as I said, I do not know what to expect. He was
      Diagnosed in stage 4 from the very 1st visit more
      Than 10 months ago. Any help you could offer, would
      be sincerely apprecieated…

      Reply

      • March 29, 2013 at 11:17 pm, Chris Battle said:

        Holly, since your father seemed to have done well on Sutent for a while, before the metastasis, have you discussed trying Inlyta with your oncologist? It’s a drug that is similar to Sutent, though the side effects are not as bad.

        Reply

      • June 02, 2013 at 1:48 am, Kirin Nielsen said:

        Hi Holly, I’m sorry to hear about your father. I hope you are doing OK with all that taking care of him must mean for you (and for him). I was diagnosed with chronic kidney disease about 14 months ago, and hope that it will remain stabile.
        How is your own health?
        I have to admit, Holly, that I found you here because I searched for you on the internet, and found this. I think of you from time to time, since you were so ill when we were at Westminster together. I’m on facebook if you would like to connect with me.(I’d enjoy that.)
        I hope the right medicine will really help your father.
        Kirin Nielsen

        Reply

  4. June 17, 2013 at 3:12 am, Mellissa L. Payne said:

    Thank you for sharing your journey with all of us.

    Reply

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