As I have a 2 year old post about Danielle, I wanted to preface it with this message.
It is with great sadness that I let you know Danielle Tindle passed away at the end of August 2017 after a prolonged battle with Neuroendocrine Carcinoma. She had been fighting cancer in one form or another for 12 years and became passionate in campaigning for more attention for young cancer patients. I’ve been following her story for almost 2 years and she has really inspired me. The title of this article is based on the title of a TV programme about her and her campaign to gain access to new drugs. I had chatted with Danielle online about some of the story below and I hope I’ve interpreted it correctly. RIP Danielle.
I first wrote about Danielle Tindle in Oct 2015 as I was really inspired by her story. Some of you will know that I have a lot of time for inspiring patient stories such as this one. There is no better form of advocacy and awareness than a human being talking about it in front of a camera or microphone. 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. A young person who had gone through gruelling treatments – several chemos and stem cell treatment for get rid of Hodgkin’s Lymphoma. One of her chemo treatments resulted in permanent loss of hair (severe Alopecia) – listen to her very inspirational video by clicking here. She talks about this aspect of her treatment plus many other things. A quote I love is her saying “to be treated like I’m unwell makes me very angry”.
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 was then moved onto a combination of Nivolumab (OPDIVO) and Ipilumumab (YERVOY), also immunotherapy drugs. In fact, the Nivolumab and Ipipumumab did initially make progress with some tumour size reduction – click here. But …….
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).
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. She was 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).
Thanks for reading
7 thoughts on “Your Money or Your Life”
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 💛✌🏼️
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.
Child NETs rare 1 in 7,000,000. There is a story about an 8 year old somewhere
Can’t remember if I answered this question but yes, although the median age is around 55, there are many young people out there. Check out a blog I wrote called 1 in 7,000,000
Thanks for sharing that Ronny! I think it may be the future of cancer treatment for some!
Inspirational. New treatments are out there.
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