Danielle's Cancer Treatment

$82,688 of $90,000 goal

Raised by 607 people in 47 months
Having already beaten Hodgkin's Lymphoma, Danielle was recently diagnosed with a rare Neuroendocrine cancer. Surgery is impossible with this cancer because it has grown into vital parts of her neck.

As the cancer progresses a few things are hard. The choking and swallowing and the pain meds are all part of the day now. But for Danielle, as an advocate for youth cancer who was just awarded her PhD, it's the impact on her voice that is difficult. It's who she is.  


Having now undergone many types of chemo, radiotherapy and surgeries Danielle faces a new treatment, and it seems to be promising! It is an immunotherapy drug called Keytruda that has been receiving a lot of attention in the cancer world recently:

Link - How the Keytruda drug works

Unfortunately, government funding for this medicine is only available to those with certain types of cancers. So because she has a rare cancer, Danielle and her family must find $19,000 to fund the medicine. If she had melanoma it would be $6.10 per round.

Danielle's cause is supported by the Unicorn Foundation , who stated:

"The Unicorn Foundation believes in equitable and timely access to lifesaving cancer drugs for all Australians, regardless of what cancer type you have been diagnosed with. Within the current system some patients who are diagnosed with rare cancers such as Neuroendocrine (NET) cancers are being disadvantaged and forced to pay thousands of dollars for access to drugs that are TGA and PBS approved for other tumor types. We need a system of shared risk from both Pharmaceutical companies and the Government so these drugs can get to the patients quickly and data can be collected to prove their capacity. Patients and their families are already facing terribly difficult health and emotional stress, they do not need the stress of financial ruin as well."

Join with us, Dan's collective friends and family across the world to get her the treatment and make this a reality!

It's gonna be Danielle 2 - Cancer 0.

:)

If you don't know the amazing story of Danielle overcoming Hodgkin's Lymphoma, this link will fill you in:

ABC Australian Story Episode - From My Father's Fridge

If you'd like to get in touch, find out more info about Danielle, the Unicorn Foundation, or just have a chat! please share your thoughts here, or email d.tindle@qut.edu.au Thankyou!
+ Read More
Hi everyone, this is Paul, Danielle's brother.

Beautiful Danielle passed away last Friday August 25, exactly 2 years to the day since this fundraising campaign was launched. She is the bravest most incredible person I ever knew, and my little sister. Witnessing the willpower and determination it took to keep going through what she did has changed my life.

Looking at her writings, photo collections and notes I'm understanding how intentional and caring she was in every aspect of her life, her friends and her family. She actually protected all of us when she was in pain, and was thinking of us and writing about us even when we didn't realise. She was so appreciative of the support of all of you, it gave her hope many times when things seemed too much.

Dan's funeral will be held at 2pm tomorrow, 4 September, at Government House, QUT Gardens Point Campus in Brisbane CBD. It will be a celebration of her life and she would love you to attend if you can. No need to wear black or dark clothes, be vibrant. This is one of the things Danielle hand wrote for me to think of when I'm sad:

"My life has not been cut short. It is complete and absolute in itself. I have lived more life than many people do in lifetimes much longer than mine."

Watching her talk about how she fought is amazing:

http://www.abc.net.au/austory/content/2015/s4418683.htm

Please join us on Monday if you can, and thank you forever for supporting Danielle and our family.

Paul Tindle
(please don't hesitate to contact me at paulotindle@gmail.com if you need to)
+ Read More
Hi Everyone

I'd just like to double down on a huge thankyou for everyone around Australia and overseas who has supported Danielle. Seeing each donation come in, I have been astonished at the goodness of you all, in many instances who I know do not know Dan personally, and have plenty of important demands on your money, but still help her to pay to fight on with expensive treatment. It has been personally inspiring for me to witness this - I'll never buy in to doom and gloom media after seeing kindness on this scale.

So...how is she? As mentioned, during the immunotherapy that this campaign helped fund, there was amazingly a 70% reduction in tumour size.

Unfortunately, progress halted and things started to grow and the treatment was stopped. This exhausted all treatment possibilities and Dan has been in palliative care in the months since then. She has had a number of emergency surgeries, and now rocks a feeding tube directly to her stomach to eat, and a tracheostomy, which is a tube that goes into your neck so that you can breathe.

So basically smoothies are always on the menu! (and silence is golden as Dan's voicebox is now out of action).

Anyhow, in line with the unpredictability of all this, her oncologist last week advised that the treatment protocol for immunotherapy has changed and that there may be benefit in treating her.

So back in the game. There is a big difference in hope and morale in having treatment rather than just pain management.

Staying true to form, despite Danielle having paid $123,000 for the immunotherapy so far, the drug company has AGAIN denied compassionate access to the treatment. I guess in the end they are about making money. (but still, in a big office somewhere, someone is looking at the application and going "nope"!). For most of us, the Pharmaceatical Benefits Scheme subsidises most of our medicines, but as discussed in Australian Story - if you have certain rare cancers, the approvals process hasn't caught up, and the drug companies can charge full price to the patient.

This story below pretty much sums it up and will be eerily familiar to those who have seen Dan's Australian Story episode:

http://www.abc.net.au/news/2016-10-18/rare-cancer-patients-push-medication-access-canberra/7943376

So treatment starts on Friday. Dan's friends will be kicking off a new funding campaign at some point to help towards the new treatment - possibly via the RareCancers Australia portal - I will link it when I know more, and this current campaign also remains active - I can see all the amazing donations coming in and they are going directly to pay for Friday's drugs which will cost $8,136.

Anyway that is the update! I'm hoping to put together a short video with Dan - I know many of you may not have seen her for a while or since the TV show. Thanks everyone once again for having contributed, I wanted to let you know how blown away and grateful we all are for what you did :)

Please share the campaign with your networks if you consider this is appropriate. I think the increased media attention on the disparity of funding is working, and is summed up here:

https://www.rarecancers.org.au/news/3373/why-cancer-can-cost-more-the-rarer-it-is

Kind regards
Paul
+ Read More
Hi everyone! If you haven't seen the latest developments in Danielle's treatment, everyone's unbelievable donations are making a huge difference :) Despite the drug not being supported by the government for this type of cancer, recent scans have show a clear dramatic reduction in the tumour size! This is after being given about 4 months to live - more than a year ago. I've attached the ABC news story below. It's pretty incredible and it seems possible we could be on the right path to defy the odds.

A gigantic thankyou once again to everyone who is donating and supporting Danielle! You guys rock, nearly $74,000 worth of medicine, and it seems to be gaining the upper hand :)

http://mobile.abc.net.au/news/2016-06-24/experimental-immunotherapy-drug-reduces-rare-tumour-size/7538520
+ Read More
Hi everyone,

Proving that the amazing support and perseverance is making a difference, as I am typing this, Danielle's story is currently the top story nationally on ABC News! !

As I mentioned on Facebook, this issue resonates with people because anyone could tomorrow find themselves in the same situation for themselves or a loved one, facing the unfairness of paying a unbelievable amount for treatment because the government will only subsidise it if you have the right cancer.

If these laws could be changed through this ordeal, it will be a change that positively impacts, and likely saves, many Australian's lives.

Thank you all :)
Paul
+ Read More

Posted by Paul Tindle
27 months ago ago
Hi Everyone

I'd just like to double down on a huge thankyou for everyone around Australia and overseas who has supported Danielle. Seeing each donation come in, I have been astonished at the goodness of you all, in many instances who I know do not know Dan personally, and have plenty of important demands on your money, but still help her to pay to fight on with expensive treatment. It has been personally inspiring for me to witness this - I'll never buy in to doom and gloom media after seeing kindness on this scale.

So...how is she? As mentioned, during the immunotherapy that this campaign helped fund, there was amazingly a 70% reduction in tumour size.

Unfortunately, progress halted and things started to grow and the treatment was stopped. This exhausted all treatment possibilities and Dan has been in palliative care in the months since then. She has had a number of emergency surgeries, and now rocks a feeding tube directly to her stomach to eat, and a tracheostomy, which is a tube that goes into your neck so that you can breathe.

So basically smoothies are always on the menu! (and silence is golden as Dan's voicebox is now out of action).

Anyhow, in line with the unpredictability of all this, her oncologist last week advised that the treatment protocol for immunotherapy has changed and that there may be benefit in treating her.

So back in the game. There is a big difference in hope and morale in having treatment rather than just pain management.

Staying true to form, despite Danielle having paid $123,000 for the immunotherapy so far, the drug company has AGAIN denied compassionate access to the treatment. I guess in the end they are about making money. (but still, in a big office somewhere, someone is looking at the application and going "nope"!). For most of us, the Pharmaceatical Benefits Scheme subsidises most of our medicines, but as discussed in Australian Story - if you have certain rare cancers, the approvals process hasn't caught up, and the drug companies can charge full price to the patient.

This story below pretty much sums it up and will be eerily familiar to those who have seen Dan's Australian Story episode:

http://www.abc.net.au/news/2016-10-18/rare-cancer-patients-push-medication-access-canberra/7943376

So treatment starts on Friday. Dan's friends will be kicking off a new funding campaign at some point to help towards the new treatment - possibly via the RareCancers Australia portal - I will link it when I know more, and this current campaign also remains active - I can see all the amazing donations coming in and they are going directly to pay for Friday's drugs which will cost $8,136.

Anyway that is the update! I'm hoping to put together a short video with Dan - I know many of you may not have seen her for a while or since the TV show. Thanks everyone once again for having contributed, I wanted to let you know how blown away and grateful we all are for what you did :)

Please share the campaign with your networks if you consider this is appropriate. I think the increased media attention on the disparity of funding is working, and is summed up here:

https://www.rarecancers.org.au/news/3373/why-cancer-can-cost-more-the-rarer-it-is

Kind regards
Paul
+ Read More
Read Latest Update
Danielle Tindle
30 months ago
2
2

I am overwhelmed and humbled by the kindness of the Australian community. I wish I could thank each one of you personally for your kind words and donations. Truly, thank you all so much for your ongoing support - it's a huge help! I am still in the midst of this cancer journey, but moving into the new year I feel strong. 2017 - bring it on! ❤️dan

+ Read More
Kaz Rochford
37 months ago
1
1

That's great news, it's so good to hear that you're able to resume doing the things you love. Take care, stay strong, sending lots of positive vibes, Kaz & Scott xx

+ Read More
John Prini
37 months ago
1
1

i saw aust' story,brave girl,well done on the degree,was happy to see,hope the new treatment goes well, you are incredible,x

+ Read More
Jenny Kenyon-Smith
38 months ago
1
1

Danielle is such an inspiration to me and I think it's outrageous that the cost of treatment can vary by thousands of dollars from one type of cancer to another . Please all show support for her and for future sufferers of this disease. She is an amazingly brave person and deserves all the help she can be given .

+ Read More
Delia Hughes
38 months ago
1
1

Hi Danielle, i watched your story on ABC and i was very touched by your bravery and challenge. I have an idea for students at my high school to be involved in your fundraising. I wonder if there is a way for us to talk to you? If not possible, i understand and wish you all the very best in your beautiful life

+ Read More
Srinivas Kotagiri
26 months ago

stay strong, Australian community will help you all the way. god is great.

+ Read More
Shane Miles
38 months ago

G,day i just watched your unfortunate circumstances on australian story my heart goes out to you and your family and everyone else who is going through the same ordeal. I just wanted to point out that there are many people coming out these days on curing there cancers with numerous alternative,natural, non mainstream illegal and suppressed treatments. Please research Hemp oil,medical marujuana,MMS (sodium chlorite) to name a few,thetruthaboutcancer.com Love and good fortune to you. : )

+ Read More
Louise Arminak
38 months ago

Although I have not looked into the issue it seems discriminatory that different diseases have different access to the same medicines on the PBS. Have you looked into your rights under the anti discrimination laws?

+ Read More
Margaret Tree
38 months ago

https://www.youtube.com/watch?v=AF84nu9wEvc please watch this here is what you have been looking for , hope this helps

+ Read More

$82,688 of $90,000 goal

Raised by 607 people in 47 months
Created August 25, 2015
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Danielle Tindle
30 months ago
2
2

I am overwhelmed and humbled by the kindness of the Australian community. I wish I could thank each one of you personally for your kind words and donations. Truly, thank you all so much for your ongoing support - it's a huge help! I am still in the midst of this cancer journey, but moving into the new year I feel strong. 2017 - bring it on! ❤️dan

+ Read More
Kaz Rochford
37 months ago
1
1

That's great news, it's so good to hear that you're able to resume doing the things you love. Take care, stay strong, sending lots of positive vibes, Kaz & Scott xx

+ Read More
John Prini
37 months ago
1
1

i saw aust' story,brave girl,well done on the degree,was happy to see,hope the new treatment goes well, you are incredible,x

+ Read More
Jenny Kenyon-Smith
38 months ago
1
1

Danielle is such an inspiration to me and I think it's outrageous that the cost of treatment can vary by thousands of dollars from one type of cancer to another . Please all show support for her and for future sufferers of this disease. She is an amazingly brave person and deserves all the help she can be given .

+ Read More
Delia Hughes
38 months ago
1
1

Hi Danielle, i watched your story on ABC and i was very touched by your bravery and challenge. I have an idea for students at my high school to be involved in your fundraising. I wonder if there is a way for us to talk to you? If not possible, i understand and wish you all the very best in your beautiful life

+ Read More
Srinivas Kotagiri
26 months ago

stay strong, Australian community will help you all the way. god is great.

+ Read More
Shane Miles
38 months ago

G,day i just watched your unfortunate circumstances on australian story my heart goes out to you and your family and everyone else who is going through the same ordeal. I just wanted to point out that there are many people coming out these days on curing there cancers with numerous alternative,natural, non mainstream illegal and suppressed treatments. Please research Hemp oil,medical marujuana,MMS (sodium chlorite) to name a few,thetruthaboutcancer.com Love and good fortune to you. : )

+ Read More
Louise Arminak
38 months ago

Although I have not looked into the issue it seems discriminatory that different diseases have different access to the same medicines on the PBS. Have you looked into your rights under the anti discrimination laws?

+ Read More
Margaret Tree
38 months ago

https://www.youtube.com/watch?v=AF84nu9wEvc please watch this here is what you have been looking for , hope this helps

+ Read More
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