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As a 38 year survivor of Ewing’s Sarcoma [and] a heart transplant recipient due to heart damage at the hands of doxorubicin [and] chest radiation, surviving survivorship has been challenging at times. Through it all, however, the call on my life [professionally and personally] has been to raise awareness about the survivor’s risk for late effects within a wellness framework.

Facts:

1) 40% of cancer survivors have at least 1 life-threatening condition

2) 25% of cancer survivors have 3 or more chronic health conditions

In June 2013, the Wall Street Journal along with several news outlets reported on a study of 1700 survivors of childhood cancer conducted by Melissa Hudson, MD of St. Jude Children’s Research Hospital. The second sentence of the WSJ piece reads as follows:

“Researchers found in a large study if adult survivors of childhood cancer, that more that 95% suffered from a chronic health condition by the age of 45, including pulmonary, hearing, cardiac, and other problems related either to their cancer or the cancer treatment.”

Phrases such as “extraordinarily high” [and] “greater than anticipated” gave me the impression that the researchers, themselves, were shocked to some degree by the prevalence of late effects among survivors.

After 38 years of survivorship, I must confess to you that I was not surprised: disappointed, yes; surprised, no.

Resilient was produced as a tool to educate [and] equip, inform [and] inspire survivors, healthcare providers, and medical educators with regard to the potential late effects of cancer treatment because no one should be cured of cancer only to succumb to long term complications of curative therapies.

Cure is NOT enough.

Resilient Trailer | My Heart Your Hands from Voyage on Vimeo.

 

23 Comments

  1. Avatar
    Marion Schaal / April 10, 2016 at 2:16 pm /Reply

    All three individuals highlighted in the trailer are presented with the challenge of a cancer diagnosis. How they manage their lives with courage and grace is inspiring. I would like to see the complete film.

  2. Avatar
    Marion Schaal / April 10, 2016 at 2:59 pm /Reply

    Amazing trailer of three courageous people. I would like to see the complete film.

    • Anti-Cancer Club
      Anti-Cancer Club / April 11, 2016 at 3:23 am /Reply

      Marion,

      Thank you for your kind words; I do hope you find the full documentary to be more informative [and] instructive on these aspects of surviving survivorship.

      Stephie!

  3. Avatar
    Wendy / April 11, 2016 at 2:21 pm /Reply

    At 15 my child went in for an adenoidectomy. He came out with DLBCL, a form of Non-Hodgkins Lymphoma. His protocol required chemo. delivered directly via Lumbar puncture (Intrathecal). He never complained, never asked “why me?” Even got straight A’s. He is 2.5 years OT and NED.

    • Anti-Cancer Club
      Anti-Cancer Club / April 11, 2016 at 4:17 pm /Reply

      Wendy,

      Diffuse Large B Cell Lymphoma: I know it well from my clinical practice. Thank you for sharing your lived experience with me/us. I am excited to share Resilient with you, so look for the link and password in your inbox within the next 1/2 hours or so.

      Stephie!

  4. Avatar
    Richard Patterson / April 11, 2016 at 4:23 pm /Reply

    The video makes a good point that more information needs to be provided to those who are cancer survivors so they can take preventative measures and take action when symptoms arise.

    • Anti-Cancer Club
      Anti-Cancer Club / April 12, 2016 at 3:04 am /Reply

      Richard,

      I couldn’t agree with you more. As survivors, we must provided as much information with the greatest degree of precision posssible so that we can work with our healthcare providers to tease out some of these late effects thereby decreasing their ability to negatively impact our health and wellbeing.

      I look forward to our conversation [and] I do hope you enjoy Resilient as it was made with individuals like yourself in mind.

      Stephie!

  5. Anti-Cancer Club
    Anti-Cancer Club / April 11, 2016 at 5:34 pm /Reply

    Hi Stephie! Your video opens our eyes to take action. There is so much that we don’t know about side effects because we are never told and that means, you must be an advocate for your child’s health and an advocate for your own health. Ask the questions… don’t take anything for granted. All three of you are an inspiration to everyone; not just those undergoing treatment. Kudos!

  6. Avatar
    Gia Sison / April 12, 2016 at 6:41 am /Reply

    Hi Stephie!

    Continue to inspire and remind people that life is good!!! ???

  7. Avatar
    Joan Friedlander / April 12, 2016 at 5:38 pm /Reply

    Thank you for sharing your stories, and highlighting an issue and conversation that I’ve not seen/heard anywhere else. The love and “the heart” is woven through each clip of the trailer. I can only imagine what the documentary will do for others in the same situation, and doctors who might not have known. This “side effect” issue – oh, we didn’t know – is likely to increase with many conditions. Brava!

    • Anti-Cancer Club
      Anti-Cancer Club / April 12, 2016 at 6:06 pm /Reply

      Thanks for you comments, Joan; I concur with you; collateral damage will continue to unfold with many conditions.

      Stephie!

  8. Avatar
    Marnie Norris / April 12, 2016 at 11:45 pm /Reply

    Incredibly powerful trailer, which hit very close to home for me. As a survivor of both breast & thyroid cancer dealing with chronic pain & fatigue after treatment, I would love to see the full documentary.

    • Anti-Cancer Club
      Anti-Cancer Club / April 13, 2016 at 4:25 am /Reply

      And I would love for you to see it, Marni, so check your inbox [and] let me know what you think, okay?!

      Stephie!

  9. Avatar
    Carla Mazzone / April 15, 2016 at 7:10 am /Reply

    Hi, Stephie, I would love to see the movie. Thank you for all your hard work for survivors. As you well know the journey can be very rough. Take care. Carla

  10. Avatar
    Perri / April 16, 2016 at 1:05 pm /Reply

    I would love to see the film!

    • Anti-Cancer Club
      Anti-Cancer Club / April 17, 2016 at 4:01 am /Reply

      Perri,

      Thank you so expressing your interest in Resilient: it should arrive in your inbox before noon ET today.

      Stephie!

  11. Avatar
    Dennis Maione / April 16, 2016 at 9:52 pm /Reply

    The trailer has already engaged me completely, and I can’t wait to see the full documentary. I know it will be informative, but even more so, inspiring.

    • Anti-Cancer Club
      Anti-Cancer Club / April 17, 2016 at 4:02 am /Reply

      Dennis,

      I am delighted that Reilient’s trailer has engaged you; it’s always nice to know the trailer is effective. Please look for the link to arrive in your inbox before noon ET today.

      Stephie!

  12. Avatar
    Jo / April 19, 2016 at 3:20 pm /Reply

    Thanks for sharing this. Resilient for sure. I worry about late effects bug win I worry that I’m not going to be alive in 5 years time with secondary breast cancer. So late effects should I bother about them? Looking forward to seeing the documentary. Best wishes to you x

    • Anti-Cancer Club
      Anti-Cancer Club / April 20, 2016 at 5:59 am /Reply

      Jo,

      I appreciate your perspective so very much; I do hope that you will glean something from the documentary [and] that you will share your thoughts on it after you have viewed it.

      Stephie

  13. Avatar
    Patti / April 21, 2016 at 9:45 pm /Reply

    As a stage three cancer survivor I am all too familiar with being able to go through 2 years of treatment but than almost a year after this I unraveled. Now I work in a survivorship program at a cancer institute and feel very strongly that not everyone is celebrating in the streets after treatment. There are extremely tough body changes and often psychological changes too that survivors don’t expecr and that the general public doesn’t understand. Memory issues, bone pain, forced menopause, neuropathy, digestion intolerances… I am so excited that there is a film about life after survivorship and hope you will send me the link. Bravo to you!

    • Anti-Cancer Club
      Anti-Cancer Club / April 22, 2016 at 4:43 am /Reply

      Patti,

      I am saddened to learn that you have been affected by at least one, but likely more, late effects of your treatment. I believe we as survivors are largely under-informed and ill-equipped with regard to our personal risk for late effects. This can no continue.

      It is my high privilege to provide you with access to Resilient. I do hope you are pleased with the production, bur most importantly, I hope that you are encouraged knowing that you are not alone in this.

      Stephie

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