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Home » Immunotherapies (IL-2, IL-15, PD-1s, etc.) » The burden of uncertainty and the search for a new cancer treatment

The burden of uncertainty and the search for a new cancer treatment

Posted by on April 3, 2012 in Immunotherapies (IL-2, IL-15, PD-1s, etc.), My Health Updates, Other Drugs, RCC News & Research - 32 Comments

 

What do the doctors say?  That’s what people keep asking us now that Chris’s third treatment (and second surgery) has failed.  Do they know what you should do next?  The short answer is no.  The long answer is no, too. While trying to be helpful about potential treatments, they acknowledge for the most part that they just don’t really know. We still have options, but the doctors can’t really say whether one might be better than the others. Neither can we.

Chris and I have poured through pages and pages of clinical trials, read articles on Molecular Cancer Therapeutics, subscribed to daily web updates from various cancer research sites, conferred with fellow patients and, of course, conferred with our oncologist as well as other specialists in the field.  We’ve always tried to stay one step ahead, with a plan in place if a treatment failed.  But now we find ourselves in a more frightening place – further up a mountain, where the terrain is steeper, rockier and the air more thin.  The paths forward aren’t clear, and there’s no view around the bend.

Two of the trials we’re reviewing are early phase I trials.  Yes, that’s redundant because phase I by definition means early.  But these are really early phase I trials – barely out of the mouse trials. In fact when the trial nurses see Chris, they seem genuinely surprised that he’s not a mouse.  When we did the MDX-1106 trial, it was also phase I — but it was the hot new therapy that everyone in the renal cell medical community was whispering about.  Like the great new rock band that all the college kids are listening to but hasn’t quite hit the mainstream yet.   These new trials don’t even have a garage to play in.  One trial we are considering – IL-15 – has had a grand total of 12 people undergo the treatment. Twelve. Not just twelve kidney cancer patients – twelve total. In the world.

I e-mailed one of the doctors who is running the IL-15 trial at the National Cancer Institute in Bethesda.  I’ve become really bold about just randomly e-mailing doctors and assuming that they’ll get back to me.  (Odd little secret, they actually usually do.  My track record is 100 percent.  Thank you doctors!).  Not only did I e-mail this doctor, I just flat out asked him: Do you think that this drug will work for my husband?  He wrote back (I told you, they always do!)  The answer was, of course, “I don’t know.”  And in fairness, how could he offer any other answer. However, he was kind enough to send me a long response with data attached – data that told us: “You could try it – it might work.”  And he’s right. It might. Maybe. Who knows?  Picking clinical trials (treatment regimens in general, really) is starting to feel more like buying lottery tickets– and that’s not a great feeling.

If we don’t do a trial, we do still have a number of FDA approved therapies to choose from.  But they’re the class of drugs that elicit this kind of response from doctors, “Sure, you can try it … although I’m not really excited about it.”  I vacillate between appreciating the honesty and wanting to scream “This isn’t a new flavor of ice cream we’re talking about – it’s my husband’s life!”

The weight of these decisions is so shockingly heavy that it’s almost comical.  And it’s not just the obvious life versus death factor – each choice has repercussions for future choices.  If we do a c-MET inhibitor now, it could make Chris ineligible for a promising new drug that hasn’t yet gone to trial.  But then again, he might be ineligible for that drug down the road anyway, and forgoing the trial now might mean missing out on a key component to battling his disease.

Chris and I will sit down and discuss the pros and cons of this treatment plan or that one. At one point we kind of stopped and laughed. The cons were numerous in each case while the pros pretty much boiled down to one: It might work.

At church on Sunday, this is what I prayed about:  I always pray for a miracle.  But then I also pray for wisdom and courage.  And strength. As with the doctors, I don’t get an answer.  I do, however, get a sense of peace and, I feel, a little bit of renewed strength.  I’m reminded to make each decision with hope – and faith – even when we’re this far up the mountain with no clear way to get back down.

  • Plummersue

    You make us so proud!!  We have been saying the same prayers and we just keep having faith and hope!  That’s very important!!  With Love, Mom and Dad

  • Mike

    Dena, you and Chris are in my daily prayers. I mention you every Sunday at our little Episcopal parish church in the pines. I’m somewhere behind you — hoping I don’t have to follow too closely — but every bit with you in spirit. You are brave warriors and worthy of praise. Every step you take shines a light for those of us that are behind. Thank you, and may God bless you on your journey. 

  • Connieabel

    Dena and Chris,
      My heart goes out to you. My husband has been fighting this disease for 4 yrs. this month. I feeled blessed that he has lived this long and pray, like you, for a drug that will help him continue his battle as well as all RCC patients. GOD will “tell” you what path to take.

  • Karen in Ottawa Canada

    Once the due diligence is done, go with your gut and trust that you’re making the right choice – you know we’re all out here willing the proper decisions your way – have faith.   Every day we make choices that could have dire consequences – do I cross this road, do I step off this curb, do I drive that highway, do I board this plane, etc… Life is a series of choices and I believe our heart & mind help us make them correctly, as long as we listen.  Hugs to you both.

  • Minniekriek

    You are in my prayers

  • Mjpattison

    I will pray with you again for Devine Guidance,,,,,,,,,,,

  • Dona Creson

    Praying for a real cure for our men. 

  • Callieschaper

    Your mom has reason to be proud of you. Your ability to write so beautifully about something so difficult is inspiring. You are in our prayers.

  • Frankfriedman

    Chris and Dena I hope soon that the next step will be a good one and all the pain and suffering you both exhibit will soon be over. Good luck always. Prof. Frank Friedman Flint,Mi.

  • Bonnie

    Dena, thank you so much for including so many people on your journey.  Your messages show the love and struggle that you and Chris are going through and I will continue to pray for just the right decision.  I am also learning from you, so thank you!
    Love,
    Bonnie Walsh

  • Jill Geer

    Dena, again I am rreminded why Chris loves you and how you came to be a couple … even though I’ve never met you. (Though your sister and I once partied at my house on an unpaved AR road in celebration of her delivery of a beanbag chair to said home). Your post convey the gravitas of this situation, and as always I am awe of both of your intelligence, determination and humanity. Thank you for these updates. I know that in the end, you two will do what is right and best for you and your family.

  • Julie Corrigan

    Dena,
    It is so difficult – this decision and all the others – all you can do is your best.  It’s been almost a year since Frank died and the last research I was doing had to do with utilizing the original tumor.  Was any of Chris’s original tumor tissue saved?  I know that McDermott in Bethesda was very well-respected and involved with new clinical trials.  Our only local RCC guy was Jeffrey Sosman and he is a complete ass….but one of the few oncologists specializing in both melanoma and renal cell carcinoma – the treatments for both are (or were in 2010 and 2011) very similar and they respond in similar fashion.  I’m sure you know all this.  I’m desperately trying to remember anything that might be helpful, but I’m like a stroke victim – terrible memory loss.  I will keep you and Chris in my thoughts and prayers and if I run across ANYTHING that might be helpful, I’ll forward asap.  Positive, positive, positive thoughts and vibes.  Take loads of pictures and videos – and I’m so excited that you gave Chris the trip to Augusta.  Frank went a couple of times and it blew his mind  :)  to be there.  Take care of yourself – really.  Julie

    • Dena Battle

      Julie — it’s hard to believe that it’s been a year.  You’re always in my thoughts and prayers.  Thank you so much for continuing to follow our journey.  Much love, Dena

  • Julie Corrigan

    Sorry, not Bethesda.  Beth-Israel in Boston.

  • Danamoon

    I am awed by your strength.  I too pray for wisdom and strength.  I also add patience to my list.  Our priest described patience as the ability to not worry about the future, but just enjoy today.  Give tomorrow over to God.  Only He knows that. 

  • Tracy Sue Freeman

    Oh Dena.  Your writing is so eloquent and so searingly honest and true.  I am moved to tears by the description of your difficult decisions.  It seems each little decision leads to more larger decisions and so on.  I will pray for a miracle (I do every night). I will pray for you both to have wisdom and courage and strength.  I just finished a bible study that was all about cherishing what we have right now and knowing what matters – Getting right with your friends, family and God.  We all know that is the right path but we get sidetracked along way so easily. I miss you and your family.  I feel I have not had the chance to get to know your awesomely funny husband and your darling daughters because we live far from each other.  You are always close in heart and prayers.  Love you, Tracy

  • Briamiller82

    Dena, stay strong and keep fighting! My dad was in a trial for RCC @ NIH. They gave us hope when there wasn’t any left. He wasn’t just a # there.
    Your husband is a saint. What he is going through is pure torture and regardless of the outcome, will make him and everyone around him a better person. I admire you both! Stay positive!!

  • betty Roddy

    this is the most compiling story I’ve read since i first met Chris…..I’ve prayed for him in every prayer I’ve prayed for all th sick.Everyone is searching for a reason, a promise and a miracle o find the right treatment to come their way. Waiting is the hard game to play….then again something might come up tomorrow….that’s what keeps us dreaming and waiting and hoping for.I know how hard it has been for Dena to write about all the different issues, good, not so good, and those that might work, and some that bring hope that seems to lead to nothing. God knows what will be right and also knows which mouse has the answer…..Hold on! Keep praying…..Don’t give up…..and know there are lots of friends, and maybe someone with some great Ideas that could help…..The break-through will come….
    Praying for you daily===
    hugs,Betty Roddy

  • Sue (Burroni) Biggar

    Dena, I have really valued reading some of what you and Chris have been going through. Thank you for taking the time to do this so that even people like me–from another life we once lived together decades ago!–can get a small sense of what you’re going throuh. With love, Sue

    • Dena Battle

      Thanks Sue — I’ve been following your blog too!  Tried to leave a comment but couldn’t get it to go through.  Can’t wait for your book to come out!!

  • JimLagrone

    There are no words to add to your thoughts. 
     I met you guys when I was running the same time Chris was working with Asa.  I am a pastor and I ask for the same miracle.  I believe you and Chris have shared have blessed far more people than you will every know.
    Our church family in LIttle Rock is with you guys.
    jim

  • Rpatter059

    Dena,
    As you know I follow you and Chris and pray for you all! Quick question, on the I-15 trial…I read that to be eligible the patient could not have undergone previous il-2 treatments. This treatment intrigued me for Jim. Did the dr indicate that Chris would be eligible? I have researced several treatments ad well that I will be discussing with our oncogist next week. Keeping a fire controlled is my second choice and would do like to try something that might put out the fire.

    In this fight together,
    Rebecca Patterson
    http://Www.caringbridge.org/visitjimpatterson

    • Dena Battle

      Rebecca — there is no restriction on prior treatment.  In fact, they want you to have gone through a couple different treatments first.  Obviously, previous immunotherapy is not an impediment, since Chris did both IL-2 and MDX-1106. I’m happy to put you in touch with Dr. Conlin — email me off-line if you want more info: dena_battle@yahoo.com

  • Margo Braunstein

    …truly understand the dilemma you and Chris are facing.  Wish I had some words of wisdom to offer, but I simply don’t…

    I do believe that a positive attitude coupled with a heavy dose of Divine Intervention makes a difference.  You and Chris are blessed with both!

    All my best wishes to you, Chris and the girls this Easter!

    Margo Braunstein

  • Bobbejo46

    Dena, Uncle Art and I are so proud of you and Chris and the way you are working to find the “right” next step.  Please know that you are constantly in our prayers, as well as in the prayers of our “Duff” church congregation.  You are both inspirations for everyone who comes into contact with you…either in person or from your blog.

    Love,

    Uncle Art and Aunt Barb 

  • Richard Fisher

    Hi Dena,
    I met your husband Chris in DC about a year ago along with my friend and colleague Brandon Fried. You and he are both inspirations to those of us who have been involved either in caregiving or having to undergo the various therapies that cancer visits upon us. My wife, Claudia, passed away about a month ago after an eighteen month battle with this disease; we have been on the same mountain as you and Chris.
    Please take comfort that with each passing day we are getting closer to the answers that will help eradicate this vile disease. From what I can tell from your writing, you both have enormous quantities of wisdom and courage, and especially strength. They will serve you well on this journey.

    • Dena Battle

      Richard — thank you so much for your message.  We’re so sorry for your loss and we’ll be keeping you in our prayers.  Thank you again for following our journey.

  • Klarkin

     My prayers are with you. I love what you pray at church. Strength, hope and faith are key. I love you both and I am thinking of you constantly.

  • Nancy Black

    Dena and Chris

    Your courage, faith and stamina continue to be an inspiration.  All of us following
    your journey wish that we could offer something other than prayers (although they
    are very important).  We continue our prayers for you. 

    Nancy and John

  • Stacey Shrader

    Hang in there Dena! You are such an inspiration. I’m sending up the same prayers for you as you are asking for yourself.

  • Maryalice13

    You both are in my thoughts and prayers. 

  • Aelsenhans

    4 years ago, yesterday the doctors gave me less than a year to live. With Stage 4 RCC, the odds were against me. The new mainstream treatments seem to be working, Sutent & Affinitor, but there is a new spot on my liver that’s worrysome. I hope to never be in that place you and your husband are in, but could very easily be in the not to distant future. God Bless you both and give you strength.

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