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Home » My Health Updates » Sutent, Round 2: Jackson Pollack Barf and Michael Jackson Juice

Sutent, Round 2: Jackson Pollack Barf and Michael Jackson Juice

Posted by on November 12, 2011 in My Health Updates, Sutent, Targeted Therapies (Sutent, Afinitor, Cabo, etc.) - 10 Comments

 

Well into the second cycle of Sutent, I’m still at full dosage despite my oncologist’s fear that I would not be able to handle that level of toxicity. You may recall that I take Sutent for four weeks, and the side effects build over the course of that period, then I take a two-week break to detox. Four on, two off; four on, two off, etc. I had gone in for a checkup after my first round on Sutent and swaggered into the examining room to note that I was doing great. Sure, some nausea, skin rashing, hand-and-foot syndrome stuff and fatigue, but nothing at the level they had feared.

My nurse practitioner, a sweet woman well-trained in the art of side-effect management (not to mention mixed martial arts) smiled kindly, maybe a little too knowingly, and said that I shouldn’t get too cocky. “The side effects build up over time,” she said. “The next cycle could be worse.”

And during those first days of this second cycle, I thought I was going to be in for a lot of trouble. I spent a couple nights not sleeping and then waking up in the morning barfing. Then, just as quickly, it passed. For the most part I’ve been handling the second cycle well – especially compared to what others have gone through.

Sure, one night recently I power-hurled all the Sutent I had just swallowed and found myself in a bit of a sweaty fog, my back up against the cold tiles of my bathroom wall. I was in a bit of a delirium wondering whether, if I tried to go back to bed, I’d end up spewing vomit all over the walls Jackson-Pollack style. The upside is that I could snap a picture and sell it as modern art for a fortune.

I should confess, I did have a couple of drinks earlier that night. A couple. In a past life, that would have been the equivalent of teetotalism. In this post-cancer life a couple of drinks is the equivalent of beerbonging a bottle of Jack Daniels. Evidently, those warning signs on the Sutent packaging about not drinking alcohol while taking this drug are quite literal. Who knew?

As I near the end of the latest cycle, I am feeling a few of the other side effects more. Fatigue may be the most significant. Fatigue is an interesting thing. Many people think of it as just being tired, the sort of tired you get after a poor night’s sleep. Go home and take a nap, and all will be good. Fatigue is different from that. Sleep doesn’t have anything to do with it. It’s more of a sense of feeling drained of energy, like you’d just run a few miles or come back from a weekend Twister conference. In meetings at work or in conversations with friends, you have to take extra precautions to not inadvertently slide down in your chair. Or just kind of numbly stare at people – which can come off as creepy. Or angry-looking. Or maybe arrogant. A girlfriend in college used to do this – and, truth be told, she was angry, creepy and arrogant most of the time. (We didn’t last long. She thought I was an egocentric, patriarchal bastard.) Should I reach a point where I am curled up in the fetal position and writing memos to coworkers with a crayon, I suspect I may need to reduce the dosage. But for now, I feel it’s under control.

No surprise – my taste and appetite have abandoned me again. It’s karma for refusing to eat squash when I was a kid. My mom would always try to force me to eat squash – “Just try it, you’ll love it!” – and I would just stare at it. It was kind of angry, creepy and arrogant on my part, now that I think about it. In any case, the down side to having no sense of taste is that everything tastes bad; the up side, though, is that everything tastes more or less equally bland. So I can eat squash now and make my mom proud.

The one new side effect I’m experiencing (other than a much more significant degree of fatigue) is more of a neuropathology issue: My entire body tingles. It’s a kind of chilly tingling. I doubt many of you will be able to process this, unless you’ve been through significant surgery lately or are a drug addict (I’m not judging), but it feels a little like you’ve just popped several Oxycodone or Percocet. Except it doesn’t go away, it’s a continuous sensation.

I do admit that I have to undergo some minor outpatient surgery on Wednesday, but not a big deal. I’ll get some Michael Jackson Juice (Propofol, for those of you nowhere near a television with CNN) and wake up a few hours later. Unless it’s administered by Jackson’s doctor. In which case, cancer may be the least of my problems.

The next day, Thursday, I go in for my first CT scan since going on Sutent. The fact that I’m not locked in a closet weeping and demanding pain killers makes me nervous. I’ve weathered all of the treatments I’ve undergone pretty well compared to what others have experienced. But none of them have worked, either. As one friend said: “I hope you get sick so that you can get well.” Hmmm. Am I sick enough to get well?

  • tabod4

    I was wondering how you are doing. My mom recently started sutent and I am hoping that it brings both you and her positive results.

  • http://kidneycancerchronicles.com/ Chris Battle

    Thanks for asking. I am doing well. I am in my 3rd cycle now. The side effects continue to be manageable compared to other treatments or even to what some other patients have experienced under Sutent. My first scan showed — for the first time of any treatments I’ve undergone — positive results — with the lymph node mets shrinking about 40 percent. The lung mets did not shrink, but I remain optimistic that the next scans will show them doing better as well.

    How long has your mom been on Sutent? I hope that she is tolerating the drug well, or at least well enough that it doesn’t get in the way of stopping her from doing the things she likes to do.

    By the way, I am starting a new blog dedicated to kidney cancer. I intend to crosspost blog pieces here at the ACKC site if they have no objections, but I wanted to start one in which I could lay out my previous experiences from a personal perspective. It is still being built but you can access it now at http://kidneycancerchronicles.com/; I hope to have it fully built-out within the month. This new blog will allow me to answer questions from readers easier than my Caringbridge blog (which doesn’t allow comments) or even this one at ACKC (as I’ll get direct email notifications of comments). Please feel free to follow up on the new blog at any time.

  • tabod4

    First I want to thank you for your blog. It is so relevant to what we are all experiencing right now and your humor and information on your experiences has provided me with hope. My mom just started week two. She was not eligible for the IL-2 or other treatments like what you endured. I am sorry that you did not have success with them. We are hoping that sutent is going to slow/manage the progression. I will follow your blobs, both old and new. I NEVER write in to these and hesitated even this time. I appreciate your kind response. I will be hoping for great results for you and my mom.

  • tabod4

    First I want to thank you for your blog. It is so relevant to what we are all experiencing right now and your humor and information on your experiences has provided me with hope. My mom just started week two. She was not eligible for the IL-2 or other treatments like what you endured. I am sorry that you did not have success with them. We are hoping that sutent is going to slow/manage the progression. I will follow your blobs, both old and new. I NEVER write in to these and hesitated even this time. I appreciate your kind response. I will be hoping for great results for you and my mom.

  • tabod4

    I was wondering how you are doing. My mom recently started sutent and I am hoping that it brings both you and her positive results.

  • Chris Battle

    Thanks for asking. I am doing well. I am in my 3rd cycle now. The side effects continue to be manageable compared to other treatments or even to what some other patients have experienced under Sutent. My first scan showed — for the first time of any treatments I’ve undergone — positive results — with the lymph node mets shrinking about 40 percent. The lung mets did not shrink, but I remain optimistic that the next scans will show them doing better as well.
    How long has your mom been on Sutent? I hope that she is tolerating the drug well, or at least well enough that it doesn’t get in the way of stopping her from doing the things she likes to do.

  • Jim

    I remember those days well of starting with Sutent.  I can tell you every cycle is different.  I experience a different combinations of side effects with every cycle, but every symptom occurs sooner or later.  BTW I am on the full dosage 4 on and 2 off for more than 4 years, I think I just started cycle 39.  Sutent does the job if you can tolrtate it.

    • Anonymous

      Four years?! That’s inspiration, Jim — thanks for sharing that. I would like to do at least four years, side effects be damned.

    • ddahl51

      I have also been on Sutent four years, do you know of anyone who has been on sutent longer than four years?

      • Anonymous

        I know of a number of people who have been on Sutent for longer than four years. If it works for you, it can be a fantastic drug that can last quite a long time. All the news stories talk about how Sutent has only a 11 month progression-free-survival median. That can be misleading, though, since a median simply means that for fifty percent of people the drug didn’t work for 11 months and for the other half, it worked longer than 11 months. Some for many years.

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