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Your Money or Your Life

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Danielle

“old enough to know better but young enough not to die of cancer”

I first wrote about Danielle Tindle in Nov 2015 as I was really inspired by her story. The inspiration came with a message of hope. Some of you will know that I have a lot of time for inspiring patient stories such as this one also knowing that I believe these should be at the forefront of international and national campaigns.

I just published a new blog entitled simply …. I CAN.   Danielle Tindle is one example of someone who can.  A young person who had gone through grueling treatment (several chemos and stem cell treatment) to get rid of Hodgkin’s Lymphoma and just when she thought her life was back and near the end of a PhD, they found a Neuroendocrine Tumour in her neck near the larynx which was inoperable and chemo was found to be ineffective. Despite this, she battles on.  Her father, a scientist, researched an experimental immunotherapy drug currently being used for Melanoma.  Danielle has confirmed to me that she was previously on Keytruda – Pembrozilumab (the Jimmy Carter drug) but she is now having a combination of Nivolumab and Ipilumumab.

Down the line, Danielle has now appeared on National TV in Australia.  In addition to Danielle’s own quest, this is clearly good exposure for Neuroendocrine Cancer and for me it was like Part 2 of the video story which I have retained in this blog near the end (worth watching before the National TV programme).

It also highlighted a growing problem which appears to be causing concern in many countries and that is the price of drugs compounded by health system processes. How crazy is this …….  the drug Danielle wants to take on an experimental basis (it is not approved for Neuroendocrine Cancers) would only cost AUS$6 AUS if she was a Melanoma patient but because she has Neuroendocrine Cancer, it is costing AUS$5000 a shot for the treatment she needs.  This would appear to be the last chance treatment for Danielle so it is really a case of your money or your life.

You can view the 30-minute ABC ‘Australian Story’ by clicking here

When I wrote the original blog, I attached a 5-minute video which I personally found very inspiring.  She talks eloquently, confidently and she maintains her composure emotionally with only small signs of losing it which is perfectly understandable.  She is a brave lady and I’m not sure I could have contained my emotions for the full 5 minutes of the video clip. You can view the video clip here: Click here to view

Good luck Danielle, I’m really hoping you can resolve the funding for this treatment and I really hope it works out.  You are a very brave and inspiring lady.

Thanks for listening

Ronny

(Please also note this post is not an endorsement of any fundraising that may be associated with the videos)

Disclaimer
My Diagnosis and Treatment History

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7 Comments

  1. pheofabulous says:

    Reblogged this on Pheo vs Fabulous and commented:
    A fascinating article detailing one of the very few known patients in the world with neuroendocrine tumors trying immunotherapy drugs to try as an alternative approach to this disease when the others stop working. So important and inspiring for patients like myself who will eventually be at this turning point, and need this information. Danielle, thank you for sharing your story so that others like myself can have a fighting chance in the future. I know of VERY few people who are trying these drugs for pheo in the world, the more information and experiences we have and share, the better @Ronny, you always do an incredible job at getting the stories out there., Thank you 💛✌🏼️

    Liked by 1 person

  2. edebock says:

    Wow! Thanks for sharing this, Ronny. In addition to the obvious hope that it inspires for the future, it helps answer a question that my father asked me last night. “Do young people get your kind of cancer?” I had to admit that I didn’t know the answer to that one! Though she doesn’t share her age, she’s obviously a LOT younger than I am and than the other patients I’ve met so far.

    Liked by 1 person

  3. SharLar6074 says:

    Thanks for sharing that Ronny! I think it may be the future of cancer treatment for some!

    Liked by 1 person

  4. Susan says:

    Inspirational. New treatments are out there.

    Liked by 1 person

    • ronnyallan says:

      Yes, the next big thing. Very early days though, this lady is receiving it on an experimental basis. It will not be for all and it will be some years before it goes mainstream. Thank you for commenting

      Like

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