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Help me fund my Lung Cancer treatment - Alectinib - 'cos Pharmac isn't

  • Rae Collin's update - the last 12 months

      30 November 2019

    November was Lung Cancer Awareness Month.

    November was the end of our Life in Ponsonby Chapter.

    In November our beloved house sold at Auction.

    Much ground has moved over the last twelve months.

    Twelve months ago, apart from a persistent cough – I was working and enjoying life in general. We had not long returned from a dream holiday and were thinking about the next one.

    Then in February, the ground moved. Not a little move, but more of an upheaval.

    I received a diagnosis - the one that no one wants. But – I don’t smoke!

    Testing revealed that I had a mutation specially for non smokers – mainly women with a meridian age of 52 years.

    Then I found out the about The Meds. The ground moved again. Targeted therapy? Not funded in New Zealand? $6500 per month? What the….why…… “It’s the most effective treatment for you.” I was informed.

    It was too - they worked! Within 3 days of commencing some of my symptoms disappeared. over time the tumor shrunk – significantly! But the cost……

    Destitution loomed. No home, no savings left, nothing for my husband in his retirement – absolutely nothing…..

    To swallow my pride and as friends and circles for assistance via facebook and Givealittle was extremely tough. I was staggered and humbled at the number of people who reached out and gave.

    The house downsize began. Treasures, our many loved books – out! Nobody wanted our heirlooms. Remedial work – painting, repairing, tweaking.

    In the meantime – writing to politicians, influentials, Roche and Pharmac, working with the Lung Foundation New Zealand requesting free meds for people with lung cancer……then the relief! In August Pharmac proposed to fund my meds from December 1 and Roche would fund the gap - thank you so much!

    Nine months later, we are about to move on. My health is getting better and better due to my ‘miracle’ targeted therapy meds. Our place will have new owners and we will be commencing our next chapter.

    November is Lung Cancer Awareness Month. Pharmacies, oncologists and surgeries are being targeted to look out for lung cancer symptoms in their patients and getting them tested. I am taking part in interviews, and writing articles about Lung Cancer to encourage more people to insist on early screening and diagnosis.

    Lung Foundation NZ needs funds to run Public Campaigns in the future. You can help by donating to https://lungfoundation.org.nz/support-us/

    TVNZ Video November 9 2019 https://www.tvnz.co.nz/one-news/new-zealand/kiwis-lung-cancer-patients-could-missing-life-prolonging-drug

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  • Wow! My Scan is showing great stuff!

      23 August 2019

    Hi everyone, A quick note to let you know that my Specialist was delighted with the results of Monday's scan. The carcenoma in my lung has shrunk even more. All my bodily aches and pains have nothing to do with the diagnosis. I feel lighter than ever! I will be on this - now free - med for an average of over 3.4 years or until it stops working then I move on to one of the 6 currently unfunded meds - but that is a story for the future. In the meantime - it is on with Living Well!!! Thank you all, for your generosity and caring!!

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  • A touching response to my Thank Yous

      20 August 2019

    I have been busy thanking Absolutely Everyone whose generosity has helped us through the extremely difficult past few months. Letters to people who wrote letters on my behalf, politicians, National Women’s Council, Siroptomist, friends, The Facebook Community, my Toastmaster colleagues, Lung Foundation, politicians – yes, even Pharmac, and to the suppliers, Roche. It was very touching to receive this reply from Simon Couldstone at Roche; “Thank you for your letter and kind words.

    I will share this with the Roche New Zealand team of 30+ dedicated people who all play a vital role in helping get our medicines to those who need them. On this occasion I'm just the lucky one who gets to inform people about it. Most important of all I'm really pleased to hear you're doing well on treatment with alectinib and best wishes to you and your husband.”

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  • Wow! Roche and Pharmac will now pay for my meds!!!

      17 August 2019
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    More Great News! Roche, the company which makes Alectinib – my ‘miracle’ med – has dug into its Compassionate Budget and decided to let us all have it Free from Now On until Pharmac’s funding kicks in, in December. That is a huge saving to us all - of up to $26,000!

    This is like winning the lottery! We no longer have to have a house fire sale – we can sell when we are ready, and move on to a new adventure.

    Alectinib is giving me a quality life, and with your prayers and support, will do for several years yet. From now on I can concentrate on keeping healthy, happy and being adventuresome!

    I am closing down my givealittle and facebook fundraisers as I no longer need them for this med. Should any contributions come before the closures take affect they will be forwarded to the Lung Foundation which advocates tirelessly to get free lung cancer meds for all. The https://lungfoundation.org.nz/ welcomes donations to support its work.

    Thank you for your generosity, thank you for your prayers and blessings, thank you for your kind words and just being around. I am most grateful. Love to all – and may none of you be faced with having to pay for your meds – ever! Rae

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  • What a Roller Coaster time!!!

      9 August 2019
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    Wow!! Pharmac has announced that it will fund 3 meds – including mine!! – from December 1 this year pending public consultation. https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12256511&fbclid=IwAR0VDl6yFFakHyDrCkeCUZ9MEM0Ux7WiciQzhTLYQ8_Fj5Ecr7w3yxp6HXU

    Words cannot adequately explain the relief and weight off my shoulders from this outcome.And we are excitedly revising our future plans!

    A quick reckoning of what my meds will have cost from March to December 1 is $56,500. Of this I just have to pay 4 more lots of $6,500. That is – another $26,000. It’s not over yet. Your ongoing sharing is appreciated.

    I am Extremely Grateful for the quality of life that Alectinib has given me! No pain at all! Energy!! It has enabled me to lobby and to work.

    And Extremely Grateful for the contributions you have made towards my meds – it has given me hope and faith during a very difficult time. Just a little more to go.

    Here is an item from RadioNZ when two of us who were interviewed about what we thought of the news; https://www.rnz.co.nz/national/programmes/first-up/audio/2018707727/pharmac-s-new-drug-funding-brings-relief-for-burdened-patients

    And tonight on 7 Sharp there is an interview with Karyn, whose face in the media helped enhance our lobbying activities.

    Thank you all, everyone, for your ongoing support…….

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  • Today is World Cancer Day and a time for......

      1 August 2019
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    Today is World Cancer Day. A Thanking day from those who are diagnosed, to all our supporters, carers, families and friends. A Remembering Day, of those who has passed on. An Acknowledging Day to the Cured and the Curers. For me today is a Being Extremely Grateful Day, for the support from you all. I am very well thanks to the 'miracle' meds which, with your ongoing assistance and sharing for me, I am able to have. Thank you!!

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  • With your help I am Sailing Towards NED (No Evidence of disease)

      24 July 2019
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    Last week I was invited to participate in the delivery of the brigantine Breeze from Pine Harbour (where she was being painted) to the Maritime Museum. It was such a privilege to be with some fellow 'old salts' and enjoy their camaraderie. We can't wait until her rigging is up and we can go sailing on her again!!! With your help I am sailing towards NED (No Evidence of disease) and I will get there!! Your donations and blessings are much appreciated but there is still a way to go. In the meantime I am writing to Pharmac and investigating new ways to fundraise - any ideas?? Thank you, thank you, everyone for working with me to get there.....

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  • Last week - Happy and Despairing.......

      16 July 2019
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    Two things happened last week - the first was that my lovely agency, Kinetic, got me 3 days work last week which will pay for 2 - 3 days meds. Yes, every bit of income counts - including your generous donations - thank you! But I need a lot more. Secondly, I picked up my next lot of meds - see the pics with the costs to find out why, at times, I am most despairing - having to pay all this to live well. With your help I have reached an eighth of my target of a year's supply of Alectinib - that's an eighth of $84,467.50! With your help we will get there - by sharing, perhaps a fundraising event? In the meantime, i am reaching out to the community to get Pharmac to fund the meds such as mine. Today I am writing to the Health Select Committee as they have a hearing soon. Thank you to Alison for helping me. Together we will get there - please share – maybe run an event??? Your generosity is very much appreciated - but we sill have a way to go....

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  • Thank you everyone - another obstacle and why I am asking to extend my fundraiser

      1 July 2019
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    Thank you all everyone for responding to my moan on Friday! Thanks to Lizzie for the coffee and to Steve for checking out my foot. At least the podiatrist is on ACC! But not my glasses, sadly. I went to the Dresden Eyewear Sale to get tested cos I am rapidly going Blind as a Bat! A side effect of the meds, I suspect. Being unwell is Not Cheap and I thank you for sharing my page - please continue to do so! For $116 I have been tested and have Driving Glasses - see pic - but also need Progressives - which is around $400 - total of around 2.5 days of meds worth - sigh... I do appreciate your generosity and please do share this page - I am 1/4 of the way to my goal of one year's supply and I cannot do this on my own. To that end I am asking Givealittle to extend my fundraiser so that with your help by sharing, we can get there together. Thank you!

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  • Uh Oh!!! It's one of those days.......

      28 June 2019
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    Sometimes we have one of those days – flat as a pancake! We wake up and wonder what we can do to achieve – what? I had one of these this morning. My fundraisers have slowed down and I have a very long way to go. I find reaching out is rather overwhelming and your assistance to do this is very much appreciated. One must be grateful for what one has!! I am grateful for this sunny morning and the Ponsonby park benches and sunny café where I had a delicious piece of ginger loaf. I am grateful to a friend who will help me with communications and another who has offered to help relieve the pain in my foot. And to yet another whom I am meeting for coffee shortly. And to you all for reaching out for me! Here am I on Ponsonby Road wearing my ‘dorky’ smile which is apparently a great face lifter! The jury is out on that one….

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  • Thank you and Radio NZ interview

      22 June 2019

    Many, many thanks for you all, for your generosity - this means so much to me! I had originally planned to run this campaign until mid July, but I am still a long way off my goal of asking for a year's lot of meds. The med Alectnib is a life changer for me! I can do pretty much anything as before, now. Please share this page amongst your associates! And here is a link to the Radio New Zealand interview that I featured in - one of a series of interviews with people who have to pay for their meds at great cost. When you listen to the first 4 the stories are heartbreaking...

    https://www.rnz.co.nz/national/programmes/first-up/audio/2018700662/life-or-death-under-pharmac-part-five PS yes it is definitely time we downsized! Earlier in the week I slipped on the stairs - my fault and been hobbling around on a swollen black foot....

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  • Thank you and an Opportunity to Spread the Truth

      17 June 2019

    Thank you all, very much. Your generosity and kind words are very touching, especially as some of you have your own challenges. My Brain Scan was clear and I am feeling very well, apart from slipping on our stairs and hurting my foot! Reclining today – such a drag…… NEWS! An Opportunity to Spread the Truth!! Last week, as a result of the investigative media articles about Pharmac by Guyon Aspiner, a few of us with various diagnoses were invited into Radio NZ to tell our stories. A perfect opportunity to tell the world that non smokers get Lung Cancer too!!! I will find out later this week when the programme will be aired. Please spread the word! Thank you for your encouragement to keep my head up - I could not do this without you - all the best to you all! Rae

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  • Another scan looming.....

      4 June 2019

    I have been booked in to have a brain scan done. This is because I have been slobbering a lot at times. (No comments about being in my dotage please!!). Am planning to get my teeth checked too - so pleased that there are some good dental deals on Grabone at the moment! Thank you all for your generosity - it means I can get these scans done timely and get Alectinb which is working hard to keep me in good health......

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  • Wow! I am so stoked with these results!!!

      30 May 2019

    Great News!!!! I have just received positive results from being on Alectinib for just a few months - my CT Scan showed much healing!I have my mojo back!!! Everyone very happy! So very grateful...... And especially for your support! This means I will have a good life for longer and continue to be useful in our community. Thank you!!!!!

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  • Thank you very much, everyone, for you generosity

      28 May 2019
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    Am sooo looking forward to finding out the results of my most recent scan, later this week!!

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  • Thank you so very much for your generosity

      23 May 2019

    Hello Everyone,

    It is hard to properly say how touched I feel by your kindness and generosity. It makes me rather tearful..... Love and all the best to you all Rae xxx

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  • Wow! I am eligible to join the ALK+ Group!

      21 May 2019
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    I have always enjoyed meeting people both online and off but I did not expect to qualify for the ALK+ facebook group. In fact one has to be specially diagnosed with this condition to join. Not only that, in New Zealand, not like Australia and England, one has to be very affluent to have this diagnosis, which some of us are not. For to take Alectinib, the most effective treatment for this diagnosis . costs am arm and 2 legs. Which is why I am appealing for your assistance if you feel inclined to. From reading the comments by participants, Alectinib, is short of a miracle, reducing pain and reducing metastasizes. For me, Alectinib, has given me a new lease on life, even enabling me to work part time. Sadly this modest income covers just an inth of the $6.500 each month to receive this drug. I am extremely grateful to those of you who have contributed to the cost of these meds. And very humbly ask that if anyone else can help, I would be most appreciative. You are most welcome to share my story - thank you!

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  • 2 Months out from starting Alectinib and - wow!!!!!

      5 May 2019
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    I am delighted with the results from taking this treatment! My pains have gone. The side effects have disappeared, I am sleeping well. I can walk without getting breathless. In fact, I am walking about 10,000 steps a day! And have a part time contract for a month. Without Allectinib the carcinoma in my lung would not have reduced. I am so grateful for the opportunity to have this treatment and especially grateful to those of you who have contributed to the cost. Thank you from the bottom of my heart! PS this is an oldish pic but it portrays how I feel!

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    • 08/05/2019 by Rae Collins

      I am sooo happy with the outcome of using this drug! Your generosity will help me to continue taking it for the next few years and live a quality life - thankyou! Humbly yours....