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Sutent Schedule Change Update

Posted by on February 4, 2012 in My Health Updates, Sutent, Targeted Therapies (Sutent, Afinitor, Cabo, etc.) - 29 Comments


The big decision has come and gone: To dose or not to dose. I chose to not.

You may recall that when we last left off I was faced with a decision to either stick to a four-week on, two-week off Sutent schedule or to switch to two-weeks on, one-week off. I was torn, though it seems I was the only one who was torn. The rest of the world (literally– I received emails from seven billion people in an Epcotian array of languages) seemed to be of one mind: Adjust your schedule, dummy.

I’m not sure why I found it hard to switch to the two-week schedule other than it wasn’t four weeks; four weeks, being twice two, just seems more aggressive. The dosage (50mg) hasn’t changed, so my logic, I admit, wasn’t especially sharp. Those who know me, though, have come to accept my lack of any sane or remotely rational approach to life. Since March 2009, when I was diagnosed, I have tried to go as aggressive as humanly possible with any treatment plan, or at least as aggressive as the doctors would allow. My goal is to wipe this disease from my body, not live with it. When two rounds of IL-2 did not work, I fought for three. I ended up taking 51 doses and trashing my body in the hopes that I could meet NED (no evidence of disease). It didn’t work out, but I skipped my oncologist’s suggestion, post-IL2, to go the traditional route and try Sutent. Instead I underwent a Phase I clinical trial with MDX-1106, another drug that has the potential to result in a complete durable response. In a Phase I trial, you don’t even know what kind of weird things can happen to you as a result of the drug; that’s the point of a Phase 1 trial: Holy cow, did you see the way Chris’s eyeballs just caught on flames and popped out of his head? Better mark that down.

MDX-1106, ultimately, didn’t work either. So the recommendation, again, was to go on Sutent. I did so with some reluctance. I knew that Sutent would be unlikely to eradicate the cancer from my body and that it would only work for so long before the cancer would find a way around the treatment. (I’ve previously written on why I held off on the Sutent.) So now that I’m taking it, I want to go as hard as physically possible.

Me with a lighter shade of hair color

The thing is, I guess I did go as hard as possible, and it started to get the better of me. The bloodwork showed my red blood cells, white blood cells and platelets all dropping to levels that disturbed Dr. Hammers, my oncologist. And by the second week into the latest round – when I had to make a decision to either take my one-week break or forge ahead for two more weeks – my fatigue levels were higher than ever. I found myself pretty much passing out the moment I got home from work. I found myself at times struggling at work. (I love how all of these articles written by well-meaning doctors, nurses and counselors suggest that, to battle fatigue, you should schedule frequent breaks through the day as well as at least one or two 20-minute periods for naps. Uhm, sure, if you don’t have a job I guess that works out just fine. When I walked out of a meeting with some clients the other day, telling them I needed to take a nap, they were … perplexed.) I was also more nauseous than ever, and the hand-foot syndrome was pretty painful. And worst of all – I think we can all agree – is that my hair has turned totally white. My own mother said I looked like her dad – and she didn’t mean when he was young. Thanks, mom.

So with these side effects stacking up more intensely than previously, along with the doctor’s recommendation that I adjust my schedule anyway, along with Dena’s evil eye, along with those 7 billion international emails, along with clients being oddly unfamiliar with nap time (don’t they have Nickelodeon?) … I stopped dosing and switched to the two-week schedule.

I will tell you that the side effects did not magically disappear in a day or even two. You will hear a lot of people tell you that when you stop taking the drug, the side effects go away quickly. Maybe they do for some people, but that hasn’t been the case for me. For the last two or three days of the break, I was doing pretty well, but the first three or four I continued to struggle.

I went back on the drug Thursday night and will continue for another week and half before taking another one-week break. Presumably, as this new pattern takes hold, the overall effect will be of diminishing the side effects without diminishing the efficacy of the drug.

I go in for my next CT scan this Thursday, so we’ll see.

  • Margo Braunstein

    I’d like to thank you for your new blog format, Chris.  All kidding aside, this move was incredibly thoughtful!  I’m sure many in the kidney cancer community will benefit from your organized format and the wealth of information you’ve provided us…of course sprinkled with a generous dose of that “Battle” humor that’s yours alone!

    Wishing you days laced with fewer and fewer side effects as you move to the new Sutent cycle and praying that Sutent shows its magic in your upcoming scans, Chris.  I’ll be thinking of you on Thursday as we head to Jacksonsville for my Friday scans.


    Margo Braunstein

    • Chris Battle

      Thanks for the good words. And we’ll be thinking of you, too, come Friday, Margo. More than thinking: Dena and I will be sure to put in extra prayers for you.

      • Mary Pendaries

        You won’t know me, Chris, but I’m a fan of your blog (and read Dena’s contributions to Kidney-Onc with interest …) and I wanted to say how much I like the new format.  Will be looking forward to keeping abreast of developments on it.  Good luck with the new Sutent schedule, too.  Will also look forward to reading how that pans out.
        Best regards,
        Mary (UK )

        • Anonymous

          Thanks, Mary. I”m so glad we’ve got some supporters from across the pond! Scans tomorrow (Thursday), so we’ll see how it’s working out.

  • Karen in Ottawa Canada

    this is an awesome new blog format – it will be a great help to so many – well done!  best wishes to you & Dena for your upcoming scans – and I hope the new Sutent schedule becomes a good fix for you – it sure appears to have been a godsend for many others.  Yours is one of only 2 KC blogs I continue to follow – you and Dena both are such an inspiration to me – I marvel continually at your grace and humour through all of this.  Having miraculously hit my 3yr NED mark, I have backed off a lot of the daily KC community while I resume a ‘normal’ life, but I follow you and your politics and your blog continually, with admiration and strong positive vibes sent your way on a regular basis.  More & more good things are coming our way for the KC community in 2012 – stay strong & keep the faith!  
    Karen in Ottawa Canada
    T3 Grade 3 clear cell, N0 M0, Sept 2008

    • Chris Battle

      Three years of NED is definitely something to celebrate, Karen! That makes you the inspiration. We’re flattered we remain among your two blogs that you still read. We’ll try to keep it worth the continued read. Of course, all ideas to make the blog more useful are welcome!

  • Beccisaporito

    Chris, I love the new site! As always, you and the family are in my prayers. I am so proud of you and Dena (and Tony and Linda and the whole family), and proud to be your cousin. Your strength, humor and general outlook are very inspiring to us all. I pray for you daily….good wishes for Thursday. Much love to all, Becci Saporito

    • Chris Battle

      Looking forward to seeing you again soon in Savannah if possible, Becci!

  • Gerry Brown

    No matter the format,  you continue to inspire me with your gritty determination! 
    You remain in our prayers!  

    • Chris Battle

      Thanks, Gerry, we’re maintaining our optimism!

  • Laura Jullien

    I’m so glad you decided to switch to this site! I’ve been praying for you and the family every night. I sure hope the Sutent schedule change is helpful. You have put up quite a fight. I have to say, the hair color is amazing. 

    • Anonymous

      A lot of people lose their hair, so I’m not complaining. It’s just taken a bit of adjustment to get comfortable. Actually, a number of people have said it looks good. Enough to make me think that they’re being honest (as opposed to trying to make me feel better). As one female friend said: “Stop bitching, you look great, distinguished. That’s the frustrating thing about men: They can go grey and look great whereas we women have to color our hair.” The legitimate annoyance in her voice certainly made me feel she was being honest!

      • Laura Jullien

        Yeah, I actually don’t think it looks bad. In the picture you’ve posted , it looks really blonde. You could get some self tanning lotion, and say you’ve been spending your days in the sun! I do want you to know how proud I am of you. I can’t imagine myself being as strong as you have been through all of this. I think you should compile your posts into a book. You are an inspiration, and a brilliant writer. I also want you to know how proud of you my mother was. She always spoke so highly of you. She was proud of all three nephews, but I think she was really impressed with your talent as a writer. I just wanted you to know that. I’m praying for you all the time.

  • Shaun T

    I beg to differ that having white hair is the worst side effect. I like looking like Santa Clause year round. On the plus side, for many of us, showing the classic side effects can signal that it’s working! But you’re just a rookie in this game. Once you have a year or 5 of Sutent under your belt, then we can revisit this worst side effect discussion. Regarding the time to feel normal again … That is exactly what I go through every cycle. I’ve been told that Sutent has a 100 hour half life, so it takes a while to vacate your system. Love the new site. Goog wishes for the cycle and scan.

    • Anonymous

      Totally agree, Shaun. You and I have joked about this quite a bit. I feel I can joke more about white hair, as it’s the least worst of the side effects. As everyone knows — the nausea, the hand/foot syndrome, the GI problems, the fatigue, etc., are definitely the side effects that matter. For me, the fatigue might be one of the worst. Still, Spooky White Eyebrow Syndrome does take some getting used to! I look forward to being able to revisit the worst of the side effects a couple of years down the road. My hope is that the Sutent works for that long; if so, the side effects are a reasonable trade off by any measure.

  • Anonymous

    As one of the 7 billion respondents to your previous blog site, I will add my voice to the chorus of approval… in a foreign language, “mooi so en baie dankie!” ah what would life be without riddles! Actually its just well done and thank you or to translate directly, prettily done and thank you.
    Hope the scans show positive results. I’m also waiting for a time and date for my next scan so I may just know a tiny bit of how you are feeling. The waiting is so debilitating!

  • Anonymous

    As one of the 7 billion respondents to your previous blog site, I will add my voice to the chorus of approval for the new blog… in a foreign language, “mooi so en baie dankie!” ah what would life be without riddles! Actually its just well done and thank you or to translate directly, prettily done and thank you.
    Hope the scans show positive results. I’m also waiting for a time and date for my next scan so be of good cheer, you are not alone!
    God bless

    • Anonymous

      Prettily done. I like that!

  • Dale and Judy Pounds

    Chris and Dena–
    Beautiful job on your new blog!  This is really outstanding!  Thank you so much for sharing and caring for us all.  You will be of tremendous help to so many people.  We wish you the best in your treatments.  Both of you take good care of yourselves.

    • Anonymous

      Thanks so much. We hope it can be more useful to different people looking for different information. All we have to do now is keep it up to date!

  • Pam_lacy

    I wish I had found this blog a year ago when my younger brother endured the pains of HDIL-2. You’ve managed to put a smile on my face, a remarkable accomplishment after hearing about all the side effects Paul went through that one and only week of treatment.

    • Anonymous

      Pam, I’m glad I can put a smile on your face, even if only briefly. I know it must have been hard to watch your brother go through that miserable experience. It can be very, very difficult for people, but for those lucky few the results can be well worth it.

  • 95miata

    Yeah the white eyebrows we’re weird for me too because all males in my family retain very dark evebrows, even after their hair has been snow white for 40 years. But I found white eye lashes to be a lot more distracting. I can see mine. Keep thinking I must have dust or a cobweb stuck to them!

    Now for the good news … TC got back from the SF conf this morning, checked my scan from last week and then shot an email saying STABLE!! I’ll see him tomorrow and ask about future XL184 trials.

    • Anonymous

      Great news Shaun!!

    • Anonymous

      PS, looking forward to hearing any news about the XL184.

  • Erin Oliver

    I figure if anyone knows the answer to this its Dena….
    Can we assume that the rate of growth while Sutent was failing for Dad ( about .4-.6mm, on all mets from 11/19/10 to 2/24/11) is the rate of growth we’d see without meds?    

    • Dena_battle

      Erin, I think it’s a stretch to assume that. Chris’s rate of growth has been all over the map. In general, RCC is slower growing than other cancers. So you can make general assumptions based on that. But we found that Chris’s mets grew rapidly following his lung surgery (which I attribute to stress on his immune system). Lung mets were stable on MDX1106, but lymph mets grew. On Sutent, lymph mets shrunk, but lung mets progressed slightly. I think there are too many variables to really determine a “standard” rate of growth. But I am not a doctor – I just play one on the internet.

  • Dana Moon

    I love your blog.  Sometimes I want to check and see how you’re doing, sometimes I just need to laugh, and sometimes I want resources or information on certain treatments.  Now I can find it all faster.  Thank you!  I’m glad to hear you are still keeping your sense of humor even with Sudent.  If you have ever checked out Brock’s caringbridge page you’ll see the picture of him with the kids white eyebrows (from Nexevar) and all.  The latest pictures, sporting the cute gowns, will show he is now dark haired once again!

    Praying scans give you good news.  We are anxiously awaiting scans on March 12th to see if we move on to round 2 of HIL-2

    • Anonymous

      Thanks for the good words, Dana — I’m glad you like the new format! And I’m looking forward to checking out Brock’s blog — I want to see pictures proving that Spooky Eyebrow Syndrome does indeed go away.

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