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Home » Medical Procedures and Other Drugs » A big man with a lead pipe, a bone scan and a drug called Cabo

A big man with a lead pipe, a bone scan and a drug called Cabo

Posted by on December 10, 2012 in Medical Procedures and Other Drugs, My Health Updates - 15 Comments
big-man-lead-pipe

He was a large man, overflowing his chair. He looked a bit like a bean bag that had been tossed into a child’s rocking chair. And he was carrying a heavy leaden pipe. These are not things that normally put me at ease, and I was not comforted when he pulled a needle out of the pipe. It was a scene out of Clockwork Orange, a demented sadist with creative weapons.

Except that he was hilarious and used jokes to calm me down. He could tell I was nervous about the needle — after all, it did have a nuclear warning sign plastered to the side, one of those yellow triangles with three black geometrical shapes framing a black circle. If you look at the warning label for a few moments, it starts to look like a happy headless clown. This can be a good or a bad thing.

“Want to feel it,” he asked.

“Er, feel what exactly?”

“The pipe.”

The pipe was blue and about 10 inches long. It appeared to be constructed of aluminum, solid but lightweight, like a baton used for track relays. When he handed it to me, my arm dropped. I felt like Wile E. Coyote when somebody hands him an anvil and drops off a cliff, his arms stretched three times their length.

“Wow, that’s got some serious heft to it.”

“Yeah,” he said. “I keep one in my truck for protection.”

“Why so heavy?”

He gestured at the needle, the one he was getting ready to slide into my veins. “There’s some serious shit in there, man. The lead protects anybody who needs to handle it.”

The needle was small in his big hands. Aside from my go-to phlebotomist, Robert, I’ve traditionally had better luck with dainty-handed techs. But he slapped the crook of my elbow a few times to raise the veins and was in and out in seconds. I think I love him.

All of this was preparation for a bone scan, which I haven’t had since my initial diagnosis back in 2009. We walked down the hall, where my pipe-wielding friend handed me off to a young woman who helped me onto the table, set a cushion under my knees, a pillow under my head and a warm blanket under my chin. I felt like a massage should come next.

A question: Is it rude to sleep during a bone scan? I can’t find an etiquette book describing the proper behavior of a gentleman undergoing nuclear imaging. I think I may have snored.

It’s not really my fault. Bone scans take a lot longer than CT scans, with which I have far more experience. (I’ve got more radiation in my body than one of those sinister cement volcanoes at Three Mile Island.) With the CT, I’d become accustomed hoisting my arms over my head and being slid, on an elongated bench, in and out of the giant metallic donut hole – an unavoidably bizarre sexual metaphor. I think the good people of GE must have conspired with Alfred Kinsey in the design and engineering of their radiology equipment. And, to keep the metaphor alive, I was always done quickly. Wham-bam. The bone scan, however, is a slower process. The sliding in and out is less rushed. You take your time. It’s the Barry White of the nuclear medicine realm.

First, they slide in your ankles and photograph your feet for a good five minutes. (I know, it just keeps going.) Then they do your head for another five. (No comment whatsoever.) Then they do your pelvic, abdominal and thoracic area for another twenty-five minutes.

Twenty-five. Thirty. Thirty-five. All in a nice quiet room with the lights dimmed. Who wouldn’t take a nap? Dena falls asleep during the opening credits of any show we try to watch together. She wouldn’t even make it past greeting the technician before she would wind up in a snuggly fetal position on the bench asking for her blanket. After the initial scanning is complete, the tech calls down to oncology with the results and waits to see if Dr. Hammers wants any additional images.

The good news is that I had no bone mets. The bad news is that I had no bone mets.

A side benefit of getting the bone scan was that if we did get news of a bone metastasis, I would have been eligible for a clinical trial with one of the hottest, most promising drugs in the cancer community. The drug is called Cabozantinib — or Cabo to its friends.  There is only one kidney cancer trial being offered for the drug – it’s in Boston – and you have to have bone mets to qualify. So, in a weird kind of way, we were almost hoping that I did have a bone met in order to get to this drug, which has produced outstanding results on both bone and soft-tissue metastasis. When we were told we had no bone mets, we found ourselves in the awkward position of being both relieved and vaguely disappointed. We are down to few drug treatment options now, and Cabo — which attacks the cancer in a way the other drugs we’ve tried do not — could be our answer.

As it stands, we have recently started on Votrient and we are hopeful it will be our drug and that we won’t need Cabo.

The other thing we learned from Dr. Hammers was that my pneumonia has not gone away. It actually got better in some areas of my lung but got worse in others. So after a month and a half of battling, first, pneumonitis and, then, pneumonia we have begun a third antibiotic in the hopes we can finally vanquish this lung infection.

So the drive home from Baltimore was a little quiet. We’d been undergoing another CT scan and the bone scan in addition and had mixed feelings about the day. That evening, as Dena was checking her mail and settling her affairs for the day, she came across some startling news: That very morning, while I was undergoing bone and CT scans at Johns Hopkins, the FDA announced that it had approved Cabo! It was very exciting news.

Kind of.

The FDA approved Cabo for medullary thyroid cancer. Not kidney cancer. Which means I still can’t get it. Or, more specifically, I can’t likely get our insurance company to pay for it.

There is an option, which is a very difficult one. We could pay for the drug out of our pockets. Considering the success rate of Cabo, it’s not an option to dismiss lightly. On the other hand, it is a remarkably expensive drug. We would likely face throwing everything we’ve got into this drug, hoping it works. The very thought of it leaves me queasy.  But, then, so does the thought of dying.

For now, it’s not a question I have to answer immediately. We’re praying that the Votrient works and saves us from such a decision. In the meantime, I’m going to spend some of that Cabo money on the latest X-Box Call of Duty as a Christmas present for … um, my little Josie. (What four-year-old wouldn’t love a chance to fire rocket grenades into enemy villages?)

  • Frank

    I pray regularly for Chris and his family.

  • steve

    Hey Chris:

    Thanks for the update. Your satire is very entertaining, and u write well. I’ll include u in my rosary, along with my 82yr old mom, who is suffering badly from COPD.
    Best Wishes Sir,
    Steve

  • Matt Ivy

    Dear Chris, so sorry you didn’t have bone mets. Huh? You’re right – that doesn’t make sense!

    As you know I have championed, promoted and done everything short of calling in Don King to push Cabozantinib to the market! FDA approved – YAY!!! Approved only for MTC – whaaaaatttttt? Who has that? Surely this is some sort of sick joke??

    I can’t begin to tell you how happy that I am that the drug is finally within our reach – but maddeningly still just beyond our grasp unless we are part of the top 2 income groups that President Obama is asking for some love…

    We will pray that Votrient is finally a match in this duel that you and Dena are in and we’ve all watched from the side lines feeling so let down and helpless to change any of the results.

    Hang in there because we are waiting and ready to finally exult news of your success…

    Best wishes,

    Matt & Tina Ivy

    RCC warriors

  • Diana Ludlow

    Chris and Dena- I’ll chip in $100 monthly on the cost for your Cabo treatment. Any other Chris followers willing to help with the cost?

  • Mick and Sue

    We are with Diana……You can count on us for a monthly amount times ten what she is putting in! Keep us posted!

  • Minnie Kriek

    Hi there Chris, thank you for this informative and very amusing post. The comparative image of Wile E had me laughing so hard I had tears in my eyes. It also evoked fond memories of going to the “bioscope” on a Saturday afternoon and watching a reel of Movietone News and then a cartoon (loved the Roadrunner and Wile) and then the main feature. Those were the days!
    And thank you for also using the donut comparison for the scanner. Once when I was making my appointment I couldn’t remember the type of scan I was to have, so I illustrated by forming a circle with my one hand and pushing my finger into it. The look of horror on the receptionists face caught me by surprise and only later I heard that I’d actually used a lewd gesture! Ah the innocence of a newby.
    Hope you find the X box game and have a wonderful Christmas.

  • Kim Larkin

    As always – your posts are awesomely informative, funny and full of hope. My brightest wishes to you, Dena and the girls for the Holidays. Love you all! Kim

  • janet p

    Had a PET scan in Sept. I thought it amusing when I started walking down hallway when everyone started yelling at me to stop. They explained if I had gone any further I would have screwed up all their electronic equipment. And to think that stuff was barreling through my body. Chris Battle – you have been called to duty to get better and I expect you to follow orders.
    Best always, Janet, KC fighter

  • Erin Oliver

    Thank you for your continued juxtaposition of nuclear medicine and intercourse. And… I’ll shake a can on a corner for some Cabo change if you need it. Just sayin.’
    Happy Holidays to you and yours!
    Erin

  • katie tichacek

    Chris, is there some sort of Chris battle fund set up? You have so many groupies and we would all love a way to help you and your family in any way we can. Hell, I’d pay for you to NOT to create double entendres out of medical procedures

  • Stephen Drake

    Chris
    you been taking those meds with pychotic side effects? what going on here? I want to help, call me
    Merry Christmas,
    Drake

  • http://www.facebook.com/chrisbattle1 Chris Battle

    I just want to leave a comment thanking everybody for (a) getting my offensive nuclear medicine jokes and (b) the kind offers of financial support. Right now, we are going to wait and see how the Votrient works. Fingers crossed, we won’t need to worry about finances because the current drug regime proves, finally, to be the magic one. But I am touched by the gracious offers and continued support from everyone. You are the best.

  • Maz

    Oooh the hair whitening drug! My husband is on it and his hair went snow white….everywhere!! The lads told him with his beard too they were going to hire him out as a Father Christmas :-)
    Side effects so far are higher BP and some indigestion and stomach pains which have been eased by having pills first thing in the morning and main meal in the evening. Other than that its been working really well in first 6 months (scan next week and results on 3rd Jan and he is still jealous of your uterus!!)

  • Richard and Joyce

    Chris – We’ve been following your progress with keen interest, as I’ve been following a similar path but perhaps one step ahead of you. I was diagnosed in 4/08 with KC. I’ve gone the Interluken 2 route @ UVA (that was a tough one), was in a clinical trial @ Hopkins with Dr. Ron Rodriguez, and also was on Votrient. I’m with Duke, with Dr. George (Dr. Rod recommended him since we’re in SC now) for a couple of years now, and last March he put me on a newly FDA approved drug called Inlyta when the Votrient was losing its effectiveness for me. This stuff has been working for me based on the scans. By the way, when they start to raise me up for the bone scan where my nose comes within 1cm of that panel, yeah, I close my eyes and try to go to sleep. They haven’t had to repeat the procedure because of me talking in my sleep or snoring, so I guess that’s ok. My biggest side effect has been fatigue, but turned out my hemoglobin was down to 8.6. Got that back up to 15.6 with Quaker Oat squares (90% RDA of iron), salads, oyster stew (I’m from Baltimore so I’m used to that), and ferrous iron tablets. I’m also cheating on getting my fruits and veggies by drinking V8 fusions (the ones with blueberries taste better)!! All of this, plus lots of support and prayers which the Lord has answered from so many wonderful people, are why I’m convinced I’m here today! We’re all pulling and praying for you, keep up the fight and wonderful sense of humor and positive outlook. Richard and Joyce

  • suresh

    Good luck.
    I am also a patient with Dr. Hammers, hoping to start the PD1+ Sutent trial.
    It will be a pleasure to help you with your finances. Let me know.
    Good luck.

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