Jackson Pollack Barf, Michael Jackson Juice and My First Post Sutent CT Scan

by Chris Battle, survivor on November 12, 2011

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. 

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.

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, sitting in the dark with 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?

19 Responses to “Jackson Pollack Barf, Michael Jackson Juice and My First Post Sutent CT Scan”

  1. December 19, 2011 at 3:40 am, tabod4 said:

    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.

    Reply

  2. December 19, 2011 at 7:29 pm, Chris Battle said:

    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.

    Reply

  3. December 20, 2011 at 1:47 am, tabod4 said:

    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.

    Reply

  4. February 07, 2012 at 9:41 pm, Kimberly said:

    Hello Chris,

    I was
    Reading your blog on the Ackc site and wondering how your doing with your treatment? I hope and pray that you are still doing well. My husband passed away on March 17 2010 from kidney cancer.
    he went thru several treatments for approx. 1yr and 3 months before the cancer won the battle. Of course when he found out he had cancer it was already stage 4. Good luck with your journey and I wish you the best.

    Kimberly

    Reply

  5. April 28, 2012 at 12:27 pm, janet said:

    Hi had my left kidney out oct 2009 started on sutent Jan 2010 as i had acouple of small tumors in my left lung now on my 24 cycle of sutent i take the 37.5 dose as the 40 was too much ,fatigue too great Can cope with what side effects i get i think the fatigue at the end of each cycle is the most agrivating especially climbing the stairs oh by the way I AM 61 years old so sutent can work for you so keep up the spirits going for a scan on mon 30april fingers crossed

    Reply

    • October 23, 2012 at 10:12 am, Colin said:

      Snap….same age same kidney….just about to start my first course of SUTENT.
      Hope that I cope with it as well as you seem to be.
      I hope it works for me and that it continues well for you.
      Thanks.for giving me .some.confidence in.the treatment.

      Reply

  6. September 10, 2012 at 10:23 pm, Anne said:

    Thank you for sharing your stories. It’s good to know that I’m not alone out here. I had my kidney out Sept. 2011. The cancer had spread to lymph node and lungs. I have papillary type. I started treatments with Avastin. It worked for 4 months but then the cancer grew in my lungs. I’m taking Sutent now. I’m on the second round 50mg. My blood pressure keeps going up toward the end of the cycle. I get a scan soon. Hoping for the best.

    Reply

    • September 14, 2012 at 3:14 pm, Chris Battle said:

      High blood pressure is sometimes a sign that the medication is working. Fingers crossed!

      Reply

  7. May 11, 2013 at 2:29 pm, Karen Maislin said:

    I am just starting to read some blogs and I hope Chris Battle you are doing ok..My husband just started on sutent almost 3 weeks ago and like you hasn’t had side effects show up as yet, except for “fatigue” that just settled in a day ago. Your discription of fatigue is perfect..I smiled reading your blog, you’re a good writer Chris….How are you doing.

    Reply

  8. June 28, 2013 at 8:09 pm, Frederic Mouyon said:

    I have been on Sutent for almost two cycles and the scan results after the first one were promising. Having read so many comments online I was worried about taking my first pill I have to confess. So far I have experienced fatigue and foot pains making it hard to walk. Fatigue well I am a chef by trade and been tired for years which makes it difficult to make the difference between the two. I live in the Caribbean and have access to what they call bush medicine. Before stating the treatment and within the two weeks break and try to boost my body with natural product, nonee, fresh turmeric, sour sop leaves tea, neem tea, molasses etc.. For my feet and every other dry parts of my body I blend some fresh aloe and massage my feet with it until it gets absorbed. I am yet to wear my special comfy soles in my shoes during the second cycle. My first victory. Wishing all the best

    Reply

  9. August 07, 2013 at 6:13 am, Frederick said:

    Sounds like this medication, sutent, is one that can be managed individually. Had the usual laproscopic potato removal 1 year ago. Late 60’s , scawny but good shape . Started on 25 mg, ,that then kicked upto 37 1/2. The 4 month cycle was tolerable for maybe 2 cycles Hfs got worse each cycle. Then tried the 2 week routine for a few more.
    After a number of combination variations, 1 -25, THEN 12 1/2 Alternations It all comes down to the level of sutent in your system and that seems to be tolerable for the individual. It’s been over a year now and things are going well.
    Detoxing, I believe is as effective as consumption, striking a balance is the challenge.
    Large doses of steak, lobster and good wine make detox worth living for. Restoring the batteries is essential.
    Frederick

    Reply

  10. August 26, 2013 at 9:35 pm, Germaine Proulx said:

    My husband will be starting it soon. Glad I found this and don’t want to lose it to keep in touch.

    Reply

  11. August 26, 2013 at 9:36 pm, Germaine Proulx said:

    My husband will be starting it soon and would like to keep in touch.

    Reply

  12. October 25, 2013 at 1:39 am, Patti said:

    I start Sutent in a couple of weeks. Had my left kidney removed 6 weeks ago. Stage 4. I had a tumor on my pelvis that was radiated. I look forward to this blog.

    Reply

  13. December 27, 2013 at 3:21 am, Prudence Waggoner said:

    Hello I’m Prudence! My dad is on Round 1 of Sutent. He is 66. Just took last pill of the first 28 days. He is now on the 14 day off period. Having lots of side effects. He is a dialysis patient and has no kidneys. What do you eat? He is having trouble eating. He has terrible mouth sores and pain in his mouth. What do you do for the mouth ulcers and sores? He has to keep his immune system strong. Please help!
    Praying for you all.
    December 26, 2013

    Reply

  14. December 27, 2013 at 9:42 pm, Frederic Mouyon said:

    Hi Prudence
    I am feeling for your dad and every other persons on the Sutent. I am on the 50mg and box number 6. My last two scans were clear and I was told that if the next one is similar they would consider stopping me in May next year.
    In the earlier stages of the medication I had to eat soup for days because on my mouth being painful. I use a mouthwash diluted with water 1 to 10,it was still burning but helped a little. I live in the Caribbean and as written higher up I have access to some local herbs etc. I have also been sucking and drinking some aloe. This is very bitter and the best way to drink it is a follow. place the aloe leaf in the freezer for a few minutes until it gets hard, peel it quickly and you can either suck it like a sweet or cut in small cubes mix it with cranberry juice. It has worked for me.
    My feet have been very painful at time making it difficult to walk, I was told to use strong moisturizers, lanolin cream and bathe in the coldest water possible. My biggest find was to talk to an old St Lucian man who said that in the old days they used Vicks vaporub for their feet. Nothing beats a try and this is what I did, within 2 days with two massages a day my feet felt better and I can walk a lot better now. I would love to know if it works for other persons, please let me know. I have spoken to my oncologist about it as well.
    All the best to all, Christmas just passed and despite all I was thankful to be able to see my son and my wife open their presents. Look forward to your two weeks break and detox yourself.
    Keep your trust in the lord and he will provide
    Frederic

    Reply

  15. January 25, 2015 at 7:39 pm, Teresas said:

    My mother has stage IV rcc. She was diagnosed April 2013, when she found a large lump under her right arm. Went to doctors and within a week was diagnosed with Stage IV – scans showed a 13cm tumor that enveloped her entire right kidney. Went on votirent for 42 days, which made her liver enzymes go through the roof – however it shrunk her kidney tumor enough to be removed lathroscopically. WE are on our 4th round of sutent. After first three rounds a scan was done and there was some shrinkage to lung mets – First round was 37.5, second round alternated 37..5/50 every other day. Thrid round was 50. During her two week break, after 3rd round, she experienced extreme fatigue and uncontrolalable shaking – to the point my father almost called 911. They called me when this was occuring and I said it may be withdrawals – I had read that somewhere. She took anti-anxiety and with what I said she calmed down and so did the uncontrollable shaking. We are now on our 4th round of sutent at 50 mg every day. Experiencing extreme fatigue and as of yesterday she is very unsteady on her feet . She is shuffling like a person with parkinsons or advanced alzheimers. She is alert and knows what is going on – want to know if anyone has had this problem or could this be peripheral neuropaathy. She does not have the sores – she just cannot walk without assistance. If this is a side effect will it pass or is this a neurological problem?

    Reply

  16. January 25, 2015 at 7:41 pm, Teresas said:

    Correction to last post – my mother was diagnosed April 2014.

    Any response would be greatly appreciated.

    Thank you,

    Teresa

    Reply

  17. January 28, 2015 at 11:47 pm, Ruth said:

    I am so glad I wandered into your website. I have metastatic renal cell carcinoma that was diagnosed on August 2014. My left kidney was removed and I received high-dose Interleukin2 treatments that were stopped when it was determined that the treatment wasn’t working. Since then,the number of new nodules in my longs have tripled, although they are still very small, and the old.ones are getting larger — except for one nodule that has started to shrink (and who obviously didn’t get the memo). I was starting to get smug about not experiencing side effects with the Sutent I started on Friday, but now know that I’d better brace myself for the cumulative effects. Thanks to all of you for becoming such a great resource for me. I am 71 years old and I seem to be doing just fine with the prognosis, but my family is taking it pretty hard. It breaks my heart to see them so down. .Do you have any words of wisdom I could share that would make this easier on them?

    Reply

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