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Home » My Health Updates » Is Sutent working? Depends on what the definition of is is.

Is Sutent working? Depends on what the definition of is is.

Posted by on February 9, 2012 in My Health Updates, Sutent, Targeted Therapies (Sutent, Afinitor, Cabo, etc.) - 46 Comments

 

I figured today might not be the best day when Dena took a wrong turn onto the interstate this morning heading for Baltimore. Or, I should say not headed for Baltimore. It’s not an uncommon mistake, as the Capitol Beltway had been turned into one long, snaking mass of construction and confusion by our local governments. You don’t think I’d let her off the hook, though, do you? No, I milked it for all it was worth and gloried in my smug righteousness. (I had told her she was making a wrong turn and she told me I was wrong.) I enjoyed my advantage, that is, until we got to I-295, encountered another hot mess of construction and bewildering detour signs and Dena asked which we should go and I promptly directed us into Southeast Washington D.C. From which we were unable to emerge for another quarter of an hour or so, hopelessly lost trying to get back to 295. Advantage lost. By the time we arrived at Johns Hopkins, Dena had managed to turn the tables entirely and blame me for missing our bloodwork appointment and breathlessly arriving just in time (okay, a little late) for the CT scans.

While we were in the lobby, a man named Greg came up to me and said, “Are you Dena Battle’s husband?” He was a fellow kidney cancer patient and was there with his family. I introduced him and his family to Dena. Turns out they follow our blog, as well as a kidney cancer listserv on which Dena is active and unafraid to make use of her Google medical degree. Like me, he’s a young guy willing to go as aggressive as possible to attack the disease. We were both pacing about a bit, waiting to get results, and it’s always nice to meet in person others who are going through this, trade stories, trade ideas and just know that you’re not alone in this. He and his family will remain in our prayers, and we hope you’ll keep them in yours too.

After the scans we had to get my blood drawn and, walking back into the lobby from the phlebotomy lab, we saw Greg and his family again and Dena, literally, shouted across the room: “Hey, he didn’t pass out.” The entire, very full lobby of people all turned and looked at me. Maybe I’m paranoid, but there seemed to be an awkward moment where the whole room was trying to decide whether to clap and hurrah or point and laugh.

Then we were ushered in to see Dr. Hammers. He pulled out the CT scan results and said, “So, it’s not that bad.”

This not an opening comment that encourages confidence.

We have some more progression in the lungs. The lung mets seem to be on a determined march, consistently undeterred for very long by whatever treatment we throw at them. The good news is that they are lazy. Or bored. Or stoned. Something. Point is, they’re not moving fast. Think of a bunch of highway construction workers. If the mets keep this pace, I’ll be around as long as it takes to finish construction on the Beltway. Which means forever.

Dr. Hammers felt that it’s worth staying on the Sutent for another cycle to see how things progress. I think this is the right decision, as we don’t want to cycle through too many different drugs too fast. The honest, if sometimes difficult, logic is that we’re trying to buy time. The longer we can hold back aggressive growth, the better. If the Sutent is slowing the rate of progression in any way, then let’s stick to it as long as we can before moving to another drug. The more time we can buy, the higher chance that a new drug comes along that could prove effective.

That said, we know that the Sutent isn’t the power hitter for us that it is for others. It may or may not be slowing growth, but the task ahead for Dena and me is to begin researching our next move. During our last meeting with Dr. Hammers, he noted that Sutent (and all TKIs) will generally show results quickly if they are working. While we had some good results with the lymph node mets, the lung  mets had not responded. So we weren’t entirely shocked to learn today that we had some small new mets in the lungs, and some growth on existing ones. In preparation for such a possibility, we’d already begun laying out options. We discussed these with Dr. Hammers during our meeting. His thinking, and it meshes with ours, is that if the TKI line of drugs (Sutent and its sisters) isn’t necessarily working, then perhaps we try an mTOR inhibitor next. In short, both of these types of drugs block the blood supply to the tumors; they simply use different pathways. Therefore, perhaps I’ll respond better to the different pathway. If that option doesn’t work, then perhaps we go back to a TKI such as the latest that’s come to market — axitinib (Inlyta). Finally, we will evaluate any new clinical trials that may emerge that appear promising. (This is another reason to stay with Sutent for now; once you’ve tried and failed three different treatment regimens it becomes difficult to qualify for clinical trials. You’re kind of like the guy who keeps losing his job; the research companies are reluctant to hire you.)

Dena is going to follow up with a post that will provide more detail on the treatment options. Like I’ve said in other posts, having an advocate with you during these appointments is invaluable. While she and Dr. Hammers discussed options, I was in another world. Once I read between the lines about the efficacy of Sutent for me, my mind went elsewhere. Like golfing and why I can’t seem to square my club at impact. Like our upcoming 10-year anniversary trip to Jamaica. Like lunch, and a hankering for pizza. Like going home and whipping my daughters in a game of Just Dance on our Xbox. Like just getting the hell out of there for a while and thinking about something besides cancer.

  • Theresa Fish

    I always knew Dena was a keeper!  You are in the best hands possible.  We are praying and for you all.  And, wanna Cheers to the 10 year Anniversary!  

  • Karen in Ottawa Canada

    so sorry to hear you didn’t get the results we all hoped for Chris.  I hope the next round of Sutent proves better for you.  Stay positive – I’m convinced that has it’s own healing effect.  

    • Chris Battle

      We’ll find a way. We’re confident of it! 

  • Shaun

    Chris, I can’t find my own words right now, so I’ll defer to a couple of much wiser folks. Kind of corny, but they’ve helped me over a few bumps on this journey.

    “It does not matter how many times you get knocked down, but how many times you get up.” – Vince Lombardi

    “Courage doesn’t always roar.  Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.’” – Mary Anne Radmacher

    • Chris Battle

      Words I’ll take to heart, Shaun, thanks for passing them along.

  • Mariaandgreg

    Hang in there Chris and Dena, You are a great team. We are praying for you always. 

  • Frankfriedman

    Everyday we pray for you Chris.  Be positive.  Prof. Frank Friedman,Flint,Mi.

    • Chris Battle

      Thanks Frank — and thanks for continuing to stay in touch.

  • Sally Stacey

    I always enjoy reading both of your posts, they are informative and entertaining!  It is always nice to know you are not the only wife/witch/pitbull that is in charge of the battle our husbands are waging against this horrible disease called Kidney Cancer!  PS Thanks for using the green recognition color…:)

    • Chris Battle

      All of husbands are eternally grateful for our wives/witches/pitbulls — more than you know.

  • Bonnie W.

    Chris and Dena,
    I am with you in prayer. 
    I am also continuing to research treatments for my Lung Cancer even though I have an oncologist that I trust implicitly.  There is so much out there including ways to keep your immune system at its best.  A doctor that I know who did oncology for 13 years recommended http://www.cancerdecisions.com and I did order the Moss report for Lung Cancer. It is a 504 page report and was last updated in Aug. 2011.  They sent it to me as a PDF and Dr. Moss is a researcher. I am sure that there is one for Kidney Cancer as well.  When you see the web site, it explains the kind of work that he does by pulling together evidence based studies on many different types of cancer.  He is a clearing house for whatever is out there in traditional treatment and Complementary Alternative Treatments.  He also does telephone consults for a fee if you purchase his report and I will order his book entitled “Customizing Your Cancer Treatment”.  I just wanted to share this information with you and perhaps you already know about him.

    I wish you all the very best and will pray that the next treatment is exactly the right one for you!!

    Love,
    Bonnie W.

    • Chris Battle

      I’ll check it out. Are you still doing well?

  • Betty Roddy

    Hi Chris, Although I don’t quite understand some of these paths you write about like where you are or where you’ve been, and where you’re going next, I guess my mind holds all this information in a small area of the brain, to release when it has obsorbed enough to make sence. If i dwell on just one thing long enough, I’ll forget, the next time I read your article, something will strike a familiar key, and then I think, OK! Now I understand! I’m really thankful for all you are doing, your attitude is pleasent and you make every moment sound interesting…..I know you have the courage to see all these programs through, You’re not a quitter, you don’t think nagative, you have more courage than i can imagine. Keep up the good work,You and Dena work so well together, God bless You both!! Prayers will keep going for you both.
    Hugs,Bett

    • Chris Battle

      Well, I’m not always good at explaining the science behind some of the drugs, Betty. Dena has promised to come back and write more on this topic.

  • Mary Pattison

    Your very positive attitude will get you to an answer that works for you as all of us continue to pray that that answer comes quickly!

  • Anonymous

    For a new thought, let’s face it clinical trials are certainly (from my bias as a member of the RCC Club, I will stick to my choice of the word “Certainly”) not driven by compassion, but rather an effort to get positive results and more money for further positive results and so on until it is released and they can make more money …and so on and so forth. One would think that a tough case of ornery RCC would be just the ticket for trials. After all if the previous meds couldn’t lick it this new wonderful one surely will!
    I also have to admit my predilection for wandering thoughts, in times of confusion one should follow the noble mindset of the great literary figure, Scarlett O’ Hara, “I’ll think about it tomorrow. Tomorrow, I’ll think of some way to get him back. After all, tomorrow is another day.” And then the technicolor David O Selznick movie fades out to the swelling sounds of the theme and we all feel better…Wish it was that easy.
    God be with you and your wife and your daughters.
    Minnie

    • Chris Battle

      Yes, the problem with clinical trials for people with kidney cancer is that there aren’t enough of us to be valuable. I would never have had access to MDX-1106, I don’t think, if the pharmaceutical company wasn’t also hoping it would work for lung cancer and melanoma — which would have bee a for larger population and therefore more lucrative. That said, I’m grateful for the companies producing new drugs that could possibly save lives.

      • Anonymous

        When I was first diagnosed with RCC the surgeon told m unequivocally that surgery was my only option and in the 5 years since then the options for treatment have definitely improved. So you are right new drugs have saved lives. But every now and so often I like to vent a little!

  • Asa Hutchinson

    Chris and Dena,
    We are following your reports and continuing in prayer for you and your wonderful family.  Don’t forget to think about a trip to Arkansas!!!

    All our love!

    Asa

    • Chris Battle

      I was just talking about that to Dena the other day. I’ll look for a good time in the spring when it’s warm and we can play some golf!

  • http://www.facebook.com/profile.php?id=540908275 Leighann Stephenson Heling

    Chris, you and Dena are never far from mind or prayers. She’s a rock star and I’m sorry but I cannot even imagine you indulging in Just Dance (with your daughters or anyone else! You were so serious and NON-goofball-ish when I knew you at U of A Fay.) But then, for the last more than a year you have proven to be one of the funniest writers I’ve encountered…so maybe you are indeed a goofball!

    I’m glad you’re a fighter. I’m so glad Dena is fierce. And while this is a craptastic situation, thank you so much for sharing it. 

    • Chris Battle

      Nope, I’ve been pretty goofy all my life. You know, there was a brief interlude in grad school while I played the serious deep thinker in literature and philosophy classes … then got back to more goofy things!

  • arw

    Yeah – Jamaica!  Congrats on the 10 years together.  Miss you both!

  • http://www.facebook.com/profile.php?id=652301798 Nick Schaper

    hang in there guys and keep the updates coming. Love that the new blog gives you more LOL Cat options.  Look forward to seeing a post about Jamaica.

  • Billpamp

    Hi Chris and Dena,  You are in my thoughts and prayers often.  This is a very hard road you are traveling but your sense of humor never seems to fail you.  I am looking forward to hearing about your Jamaca vacation/anniversary.  I am sure you will love it. 

    I am so excited that I have found a way to respond to you – my computer skills are limited.  I had such a good time visiting your mom and dad.  They never change and that is such a good thing.

    Love from the Hendricks clan. 

    • Chris Battle

      So good to hear from the Hendricks — hope you are well!

    • Chris Battle

      It’s always great to hear from the Henkricks clan, Pam. I hope all are doing well! Try to keep my folks in line. (No easy task, I know.)

  • Erin Oliver

    Chins up, Team Battle! I have faith that your battle will not be in vain.
    Erin

    • Chris Battle

      We spoke to our doctor about your father’s regimen. That is also an option we are considering. So keep your blog up to date so we can follow your progress!!

    • Chris Battle

      I like your spunk. And your puns. We’ll keep the faith!

  • http://www.facebook.com/feedallascaitlin Renee R Robertson Miller

    I love your stories,I have not been on here much and have not been a good Kidney Cancer survivor, Life got in the way and my lazyness which is sad but true. I am half glad for what is going on with you and your meds. I wish there would of been nothing on your lungs, We as a whole will fight and win this battle together. Tell Dena Hi and you 2 sound like my husband and me in the car LOL. Keep your head up and keep on trucking. My scan is on the 23rd yummy.Talk to you soon. Always in my Prayers.

    • Chris Battle

      Renee, I’m not sure what a “good kidney cancer survivor” is, but I’d say that the “surviving” is a pretty good ideal. Good luck on your scans; you’ll be in our prayers.

  • Nancyblack

    Ten years – great milestone; and the prayers continue for both of you

    Nancy and John Black

  • Plummersue

    Okay Chris, another bump in the road! It is only going to make us all stronger!! Enjoy Jamaica and lets get hopping again! We love you!

  • Alleyoops124

    Hey Chris and Dena-Can’t tell you how much your optimism and sense of humor encourages others who are facing similar circumstances. You have a real gift for sharing facts intermingled with fun. My husband, too, is a stage IV kidney cancer patient of Dr. Hammers who just finished round 2 of IL-2. Thank you for opening up about your your experiences; it means a lot.

    • Nixoncheryl

      I completed Il-2 treatment 6 months ago. If you have questions I will be glad to help you. this treatment is also tormenting for the caregiver as well. Let me know if I may help you.

      • jenny

        Absolute HELL it was.
        Best wishes
        Jenny

    • Jenny

      Hi I had the IL2 and I managed 5 cycles, got rid of the cancer on my Liver but not my Lungs…. Femeral line was always put in by students painful I wish I knew that at the time but then the London Hospital is a teaching hospital after all
      Jenny

  • Kim Larkin

    I am thinking of you and Dena and praying for you! I love the new blog. It’s much easier to read and follow. You are in my thoughts, always. 

  • Jenny

    Sinitinib Sutant failed for me after 9 months, well before that really I just coped with the side effects for weeks before telling the Docs (stupid I know) Ive had Interleukin 2 ive had Sutant Ive had a trial drug and placebo together (Cosak) failed after 8 weeks, was fine on that too side effects not bad at all…. Now im off the trial drugs as breathing really got bad lung disease got worst and lymph in chest so now given me
    Everolimus been on this three weeks now. Also on Steroids for my breathing spose its helping a bit but have arthritis with it and a cough. So need some decent drugs what next
    Jenny

  • Donna Westwood

    I just found your site and am so happy to fine someone else who does not always think doctors know everything. If I didn’t play google Dr. my husband would of died a few years ago. He used Sutent and a few others see http://www.mylifeline.org/Geraldwestwood but so far can’t find one that gets to the lung tumors. He has one that grows into his airway and blocks it. We found a Dr that will laser it out of the airway but I wish we could fine someone to remove the tumors in his lung and I don’t think we will ever fine a drug to help them. He had his kidney removed in 2007 so we have been at this a LONG time

  • elaine

    My husband was diagnosed last year with RCC.  Had his right kidney removed.  He just started his 3rd cycle of Sutent and the tumor on his lung has dissolved.  He has three on his other kidney.  They have  showed slight regresssion.  It seems so far the Sutent is working for him. Gets very nauseas in the 3rd and 4th weeks. Loses about 15 pounds.  So far it seems to be working for him.  My prayers go to the both of you.  Hope to hear from you.
    Elaine

    • Dena Battle

      Elaine — so glad to hear that sutent is working for you husband.  If your husband has clear cell RCC, you might discuss high dose IL-2 as a possible treatment option, as well as the MDX-1106 trial — both involve immunotherapy which in a small group of people can result in a cure for stage 4 RCC.  Good luck and feel free to contact us directly: dena_battle@yahoo.com.

  • Leeann

    I read an interesting article today and thought Dena would look into this further: http://vitals.msnbc.msn.com/_news/2012/03/07/10602724-new-melanoma-treatment-a-turning-point-against-cancer. Thanks for all the information (and humor) you have shared with so many.

    • Dena Battle

      Thanks Leeann — It would be great if we could see similar therapy developed for RCC!  I’ll raise it with our oncologist next week!

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