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Home » My Health Updates » New Problems, New Questions Put on Hold

New Problems, New Questions Put on Hold

Posted by on June 24, 2013 in My Health Updates - 19 Comments
tybee pier

When a doctor tells you that you have cancer or that your cancer is progressing, your first thought is this: Do something now!  Four years into this journey though, we know that doing something fast, isn’t the same as doing something right.  In fact, usually doing something fast is the exact opposite.

It’s been a little over a week since we found out that Chris’s cancer is progressing and that Cabo is no longer working the way that it did.  So many of you have e-mailed, called, reached out to tell us you’re thinking of us and you’re praying for us.  Thank you.  But we also often get the question: what have you decided?

The answer is this: We haven’t decided anything yet.

Well, that’s not entirely accurate.  We have decided a few things.

We decided to get a tumor tissue sample last week from one of Chris’s lung mets.  We’ve sent it off to a lab in Arizona where they are going to do a molecular analysis.  They’ll look at the tissue and see if there are any out of the ordinary biomarkers – things that would give us a clue about Chris’s cancer.  The hope is that they’ll see something that will point to an “out of the box” treatment – maybe even a chemotherapeutic drug that RCC doesn’t normally respond to.  We should have results from that later this week or early next week.

Dr. Hammers has also put in an order for an immunotherapy drug that’s used to treat melanoma.  It’s a drug that’s been tested in renal cell in the past, but was never FDA approved.  It comes with some risks to an RCC patient that melanoma patients don’t necessarily face. We suspect that our insurance company will deny coverage, but we won’t know that for a few more days.  After that, we might appeal the decision, which would likely take another week.

In the meantime, we’ve made one more very important decision.  We’ve decided to go to Tybee Island with our girls.  It’s become somewhat of an annual trip for us.  Tybee is a barrier island, just outside of Savannah.  As many of you know, Savannah is a special place for Chris and I. Chris’s family is from Savannah, and it’s important to us that our girls feel at home there – now, and in the future.

On Thursday, we’ll pack up the van and head to the island.  There’s shade for Chris and we can tote along some extra oxygen to help him out when needed.  We feel like we have some degree of control of the environment should Chris face an immediate health emergency, with good hospitals in the area. Meanwhile, the girls can run and play and Chris will be able to spend some quality time with them.  I’ll relax in the one place where I seem to be able to let the anxiety and fear go.

As results come in, as other decisions outside of our control are made, we’ll gather more information like shells on the beach – and we’ll make some tough decisions.  For now though, we’re not going to do anything but relax.

  • Scott Peltier

    I can only imagine all you guys are dealing with. Your strength is amazing. I pray for some direction for you, from the tumor evaluation. I have often wondered about the melanoma drugs since there seems to be a connection between it and RCC. I hope the insurance company comes through.

    My wife was dx in November of 2011. Since her nephrectomy she has had two liver resections for isolated mets. We go back to Duke Thursday and are hopeful but of course very fearful.

    It is hard to press on and not worry. It s so very helpful to read your posts. I gather strength, knowledge and wisdoms from each post. I pray for Chris and your family often.

    Have a wonderful and blessed trip.

    Regards,

    Scott

  • Mary Prazma

    Have a wonderful time!
    Mary Prazma

  • Mick and Sue

    Sounds like a perfect plan to me!! Wish we could join you!! Love, Mom and Dad XOXOXO

  • Nick Schaper

    Love that area and hope you guys enjoy yourselves. We’ll all be thinking about you.

  • Kenny

    We’ve never been there. Is that where they have the great Pralines?
    We are planning a long weekend in Rehoboth after Valerie s next scans mid July. She’s been doing better and better.

    Have a nice trip and thank you for keeping us posted, I never ask, but I am always curious and concerned. Oh yeah– watch out for all those speed traps in SC.

  • Minnie Kriek

    Enjoy your holiday.
    Much love
    Minnie

  • Chris Fegles

    Praying for Chris and you Dena, always. Have a blessed, pleasant, memorable & relaxing time away with the girls. Touch often, laugh at silly things and enjoy each other immensely.

  • Anonymous

    Enjoy the beach, the girls, each other and especially the love!

  • Connie Abel

    A haven for you all is exactly what you need!

  • Rebecca

    Enjoy! Savor the relaxation. Praying it will be another special time for all! Praying for rapid results, outoif the box effective treatment, and renewal of your mind, body, and soul.

    Praying,
    Rebecca

  • Wendy

    Chris and you have so much to teach us. And that you are always willing to share your thoughts and ideas is a real boon for those of us fortunate enough to be connected with you. Enjoy Tybee!! All my love, Wendy

  • David & Kathy Pollak

    Have a wonderful respite with the girls, knowing that so many of us love you & are praying for you.

  • Mike Fegles

    Dena & Chris, My heart goes out to you as do my prayers and support. I have never personally met you but you feel like family to me. Chris’ accounts of HD IL-2 were trailblazing for me as I prepared for the same treatment. I’ve leaned into you both for advice and received it. I don’t need to say “hang in there”,… you always have. I think of you both often and am ever grateful to be a part of your lives from afar. Relax, rest, let your mind go awol. The ocean is so soothing. The waves, the birds, the boats and people. The beach, the coast, the sky blue and the deep blue,.. have a way of syphoning off the anxiety and calming the spirit.
    Love your family,
    Mike

  • Vicki and Rick

    There are not enough words in the world to truly convey the love and support so many of us send. We think of you both as more than simply trailblazers in this world we live in but also as friends. We’ve had the privilege of laughing with and crying such similar tears. My heart breaks to read that cabo is no longer providing the relief you all so desperately need but rejoices in the love and relaxation I hope you will find in Tybee Island. May answers – and more importantly solutions – await you upon your return.

  • Jonathan Parker

    I am basicaally agnostic-(but my twin sons were born at 28 weeks and one spent 6 months in the NICU- the other one had a brain bleed that was touch and go as far as drilling and effect, Everyone (I did) prays when there is little control-and even though I prefer action over emotional response – the nicest thing anyone that wasn’t working on them could say is they would pray for them). I will pray for you, but also may we bend the arc of justice- outside of enjoying every day and loving my family, that is the ultimate accomplishment to me, and I see that in your posts too. Keep Battling.

    • Jonathan Parker

      They are 17 now…the one with the brain bleed didn’t need significant intervention (it was a tough night..one of my worst), he is just like me, we both are Aspies, but I think he will do good things too. The other one is developmentally delayed, but he has drive to do the best he can, and we both have grown up together and he has taught me much. I hope your family’s outcome is as positive as mine.

  • Richard Catlett

    Hi Dena: The following are a series of emails that were generated today by one sent by me to my dear friend for over 50 years and fellow cancer survivor (Stage IV Melanoma) After recent immunetherapy treatments he has had amazing results and now considers himself NED. There are many similarities between Kidney cancer and Melanoma and when approached about treating RCC the folks at UCSF seem ready to help. You can use the contact info in the e-mails to talk to their RCC people. Maybe a “compassionate use” of one of the Melanoma meds or a RCC Immunotherapy trial. Begin forwarded message:

    From: “Takamura, Kathryn”
    Date:
    June 26, 2013, 3:51:43 PM PDT
    To: “‘itsamoroso@aol.com’” , “rcatlett@wavecable.com”
    Subject:
    RE: Yervoy

    Hi
    Dick,

    The
    kidney cancer trials conducted at UCSF are coordinated through our GU group and
    I have copied the contact information for their Lead Coordinator, Rebecca Cook,
    below. She may be able to provide you a specific list of the trials run through
    their group. One of my co-workers also recommended setting up a consultation
    with Dr. Amy Lin here at UCSF as a starting point. I would recommend giving
    Rebecca a call first to see if she has more details or information. Please let
    me know how things turn out or how else I can help.

    Rebecca
    Cook

    Lead
    Clinical Research Coordinator, GU Med Onc

    Investigational
    Trials Resource, UCSF HDFCCC

    Tel.:
    (415) 885-7329 x 7-6220

    Fax:
    (415) 353-9566

    Sincerely,

    Toshimi
    Takamura

    Clinical
    Research Coordinator

    Melanoma
    and Cutaneous Oncology

    415-885-3855
    (tel)

    415-353-9721
    (fax)

    takamurak@cc.ucsf.edu

    From: itsamoroso@aol.com [mailto:itsamoroso@aol.com]
    Sent:
    Wednesday, June 26, 2013 2:57 PM
    To: rcatlett@wavecable.com
    Cc:
    Takamura, Kathryn
    Subject: Re: Yervoy

    hi
    dick,

    you
    never bother me with issues like this..we are a band of brothers fighting
    this dread disease……i have not been in a vervoy trial. it that was offered
    to me before i started at ucsf in a clinical trail called il-12 which has been
    quite successful to date….this morning when i was having my last “zapping”, i
    spoke to tashimi takamura one of the leaders in my trial. she is also familiar
    with other trials……..by cc of this e-mil i’m introducing you to tashimi so
    that you can ask questions.

    regards,

    dave

    tashimi..thanks
    for your help…….

    —–Original
    Message—–
    From: Richard Catlett
    To:
    Itsamoroso
    Sent: Wed, Jun
    26, 2013 9:58 am
    Subject: Yervoy

    David;
    I hate to bother you with stupid questions, however I will. I have an
    aquaintance who is struggling with his kidney cancer and has tried almost
    everything approved by the FDA. He has survived four years, but is currently
    having progression on his treatment. I think I remember that you were able to
    get into a trial of ipilimumab (Yervoy) through UCSF and have had outstanding
    results. There has been talk in the kidney cancer world of using immunotherapy
    drugs such as Yervoy as there have been some successful trials for kidney
    cancer, but no FDA approval as of yet. Some Doctors are willing to prescribe
    drugs that have a chance of working when all else has failed on a “compassionate
    use ” basis.

    If I
    got the facts right, please confirm and I will pass along the general
    information (no names mentioned) We might be able to help this
    fellow.

    BTW:
    You have gotten a whole lot better at Words with friends…you must be
    practicing.

    Your
    old pal

    Dick
    Catlett

  • Stacey Shrader Joslin

    Have a wonderful, relaxing, fun and rejuvenating time! Sorry I missed seeing you in DC a few weeks ago. I was so bummed to have to have to cancel at the last minute but I was so sick it would not have been pretty. Blessings on all of you!

    Stacey Shrader Joslin

  • john neary

    Hey you two

    Take a break while you are there from cancer. You have earned it! We are praying for you both. Matter of fact, we’re praying for all of us!

    John Neary

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