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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 Oct 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.  I truly believe these should be at the forefront of international and national campaigns.

Danielle has appeared many times in the national newspapers and TV in Australia. In addition to Danielle’s own quest, this is clearly good exposure for Neuroendocrine Cancer.

I once published a new blog entitled simply …. I CAN.   Danielle Tindle is one example of someone who can. A young person who had gone through gruelling 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 battled on.

Her father, a scientist, had coincidentally been involved in the research of an experimental immunotherapy drug, which was at the time being used for Melanoma.  Pembrozilumab (KEYTRUDA) has since been approved for a number of cancers including Melanoma, Hodgkin’s Lymphoma, metastatic nonsquamous non-small cell lung cancer (NSCLC); and very recently for advanced or metastatic urothelial carcinoma.

Danielle’s story had also highlighted a growing problem which appears to be causing concern in many countries – the price of drugs which is then compounded by health system processes. How crazy was this …….  Danielle initially wanted to take Pembrozilumab (KEYTRUDA) (made famous by former US President Jimmy Carter) on an experimental basis (……it is not approved for any type of Neuroendocrine Cancer). It would only cost AUS$6 AUS if she was a Melanoma patient but because she has Neuroendocrine Cancer, it cost AUS$5000 a shot for the treatment she needs.  You can view the 30-minute ABC ‘Australian Story’ by clicking here

Danielle has confirmed to me that she did eventually try Pembrozilumab (KEYTRUDA) but she is now having a combination of Nivolumab (OPDIVO) and Ipilumumab (YERVOY), also immunotherapy drugs.  In fact, the Nivolumab and Ipipumumab did make progress with some tumour size reduction – click here But …….

Another rollercoaster……

Unfortunately, from an update gleaned from her ‘gofundme‘ site (Apr 2017), it would appear progress with Nivolumab and Ipipumumab halted, things started to grow and the treatment was stopped.  Danielle was then put into palliative care for pain relief. She has had a number of emergency surgeries, including a feeding tube directly to her stomach to eat, and a tracheostomy (a tube that goes into your neck so that you can breathe).  These seem to have been removed now looking at her facebook account.

Then a new breakthrough when her oncologist advised that the treatment protocol for immunotherapy had changed and that there may be benefit in continuing to treat her.  However, the financial constraints still apply. Despite, Danielle having paid $123,000 for the immunotherapy so far, the drug company has AGAIN denied compassionate access to the treatment. 

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.  (Please note this video was recorded before the immunotherapy treatment).

Good luck Danielle, I really hope it works out.  You are a very brave and inspiring lady.

Thanks for reading


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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