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Coffee grinders, bone marrow and a new treatment plan

Posted by on April 18, 2012 in Medical Procedures and Other Drugs, My Health Updates - 21 Comments


The National 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.)

  • Mike Venable

    Chris, great post, as usual. I just want you to know that I pray for you and Dena daily. I say your names out loud at our tiny little Episcopal church in Seale, Ala. every Sunday and I am, with this short note, sending a concentrated little bottle of hope and good karma that you are in the perfect place at just the right time. IL-15 is going to be the stuff. Hang tough and keep writing. I’m hanging on every word. 

  • Pwdekemper

    Chris,  thanks for sharing your experience.  I am still getting results for Sutent but at some point I will have to find the next treatment also so I am following your journey closely.  My wife worked on the NIH campus for over 20 years and my brother-in-law was in several trials at NIH for his Renal Cell Cancer – he would walk from his office in Building 1 to the Clincal Center and back.  Twelve years ago he was the longest surviving RCC patient with Stem Cell Transfer and also in the early trial for IL-2.  Maybe he in some way, he paved the way for us to be more successful in our fight.  You are a fantastic writer but more importantly you inspire me to be strong.  I will be praying for you and Dena.

  • Jplantin

    You are my hero. Praying IL-15 is the answer. By the way, you have typo in your post. Finding it will give you something to do.

  • Julie Corrigan

    Thank you for taking the time to  update us and entertain us as well.  I keep you in my thoughts and have such admiration for your courage and humor – in the face of IL-15 – and IL – Interluken I presume – is the only known curative treatment, so I guess 15 is a cool number. Frank had two cycles of IL-2 and it was Dante’s sixth circle, but Frank came out and rebounded within weeks to feeling well enough to play golf.  I’m assuming you’re still flying high from the euphoria of the Masters?  Good luck – I’ll be thinking of you both.

  • Karen in Ottawa Canada

    First, on behalf of all of us RCC folk out here, I send you another huge ‘thank you Chris’ for taking on this Phase 1, thereby adding to the research & search for a cancer cure for all of us.  Secondly, you know you have my best wishes & thoughts with you throughout the next, hopefully not too tough, weeks.  And lastly, onTuesday 24th, I’ll be enjoying some ‘freedom 55′ birthday cake at my office – guess I’ll forget about sending you a slice – you’d likely upchuck it – that would be a sinful waste!  Hugs to Dena – don’t put her through too much hell over the next fortnight!

  • Frankfriedman8311

    Chris: I am with you 100%. I hope the treatment works. Praing for you everyday. Prof. Frank Friedman,Flint,Mi.

  • Margo – Paln City, FL

    Praying for THE BEST for you and Dena as you move ahead with the IL-15 trial, Chris!  As for the bone marrow biopsy…all I can come up with is UGH!!!  You are a brave man!  Charge on!!!!

  • Mary Pendaries

    Chris, what a great post !  Had me chuckling from the first to the last line …. We will be thinking of you as you go through this IL-15 trial and hoping you will see the results you want.
    Hope it all goes well for you and Dena.

    Very best wishes from the UK,

  • Minniekriek

    Hope the lettuce and sugar water is enough to sustain you and beware, it has been proven that the exercise wheel is addictive. My hamster, Idgy Threadgoode is a case in point!
    I hope your stay at the NIH is comfortable and the IL-15 kills all known germs etc dead.

  • Pete -friend of Linda’s

    In case you don’t notice us,  your friends are right beside you on that wheel.

  • LaNeia

    As always, wishing you the VERY best. 

  • Chardk

    Saying my prayers!

  • Connie Abel

    MyDear Chris and Dena,

    You two make my day.

  • Renee

    Thoughts and Prayers alway, Stay strong and beat the hell out of them with the coffee grinder:) LOL

  • Linda Cox

    Hi Chris and Dena! 
    I loved your comment about the lettuce, water and hampster wheel!  = )  Bless your heart, you always find humor in your situation.  I know it keeps your readers faithful! 

    You’ll be there for 2 weeks?  Do you get a “weekend pass” like you do with HD IL2?  Have you had the HD IL2?  I remember when Lori went through it.  We stayed with her from early a.m. till 11-12 when she was asleep.  I’ll be anxious to hear/read if the side effects are the same or if there are side effects.
    Maybe Dena will update us on FB if you don’t feel up to posting. = )

    Always remember you are in my daily prayers!!!

    Love, hugs and prayers,

  • Laura

    First I want to let you know how brave I think you are. I can’t imagine having to choose what drugs to take. I’m praying for positive results. Your comment about the lettuce and sugar water reminded me of an article I saw recently. There is a new hotel in France that  allows it’s guests to live like a rodent. The rooms have a human sized Hamster wheel, water spigot, and even a bathroom with a box of wood chips. Next time your online, look it up. :)

  • Shaun

    Chris and Dena,

    You guys have been through hell and back too many times. I don’t how you can keep making us laugh with all that’s going on, but like everyone else, I admire your strength and courage. Prayers that you finally catch a well earned break and respond.
    Now to answer your question about Bubba’s amazing shot at the Masters … 2 part answer. #1 – I doubt that I could have even punched it out to the fairway and #2 – the only time I can bend the ball that much is when I try to hit it straight because there’s nothing but water on the right.

  • Mjpattison

    Onward and upward, prayers that this is IT, the cure we are all pulling for.

  • Sandnwater

    I live about 1 mile from NIH, I happily offer you & the family my condo for anything you may need while you are so far up north away from home!! :) I have a 2nd bedroom you are welcome to stay in…it comes with free parking!! Just txt or call anytime of day/night!! 202-262-0014
    P.S. hampster/lettuce/wheel…..LOL!

  • Dona Creson

    Praying for you and your 3 girls. Hope this works for all of us!

  • Billpamp

    Hi Chris and Dena,  As always a great post but so sorry you guys are going through all of this.  You are in my thoughts and prayers.  Love you.  Pam Hendricks

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