› Forums › General Melanoma Community › Mum – Sadly missed but not forgotten
- This topic has 24 replies, 8 voices, and was last updated 12 years, 8 months ago by
acortes.
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- May 26, 2012 at 6:53 am
Unfortunately I am here to post sad news about my Mum. Mum had been on Yervoy up until around February/March 2012. It was hard to say whether it was working, though she showed signs of an immune response – e.g. rash, heavy foot, some other side effects (though not particularly significant). Unfortunately her larger tumour on her spine eventually restricted her ability to walk and she became wheelchair bound.
Unfortunately I am here to post sad news about my Mum. Mum had been on Yervoy up until around February/March 2012. It was hard to say whether it was working, though she showed signs of an immune response – e.g. rash, heavy foot, some other side effects (though not particularly significant). Unfortunately her larger tumour on her spine eventually restricted her ability to walk and she became wheelchair bound.
Mum got to enjoy a fantastic holiday with my Dad in late March/early April. Upon her return, she was not feeling right, and it was discovered that after almost 11 months of jher sacrum tumour just growing where it was and not "spreading", it had spread to her stomach, kidney and liver as well as her upper body. After the controversy of Yervoy (ipi) being rejected on the Australian Pharmaceutical Benefits Scheme around the same time, I proactively campaigned against this decision so that people like my Mum would have subsidised access to Yervoy again even after their tumours had spread elsewhere. This would have been a different start for Mum, as they finally could safely access some of her tumours to do a vaccine + Yervoy (when before they could only do a vaccine with other people's tumours + Yervoy due to the location of her initial tumour). Unfortunately we did not get time to take this further nor even to try raise the $120,000 it would've cost to go on Yervoy again.
Sadly, Mum quickly deteriorated within the month, and on 16 May 2012, she passed away at home with all of her family by her side (as she wished). She is deeply missed and we are all lost without her. Not sure how we will go on in future, but my campaigning of the PBS decision and other melanoma treatments I hope will bring some meaning to my purpose in life, as well as the love between my family, who I believe are far closer due to Mum. A researcher is doing research into Mum's melanoma (melanoma with an unknown primary), who connected with Mum's story, and is doing fundraising for his research in her honour, which is truly inspiring. I know Mum is proud of everything we have done, and she will never, ever be forgotten. We love her SO very much & she was just such an amazing, inspiring and beautiful person.
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- May 26, 2012 at 12:18 pm
So sorry on the loss oy your mum.Way too young.Will be in my prayers tonite.Keep the fight for funding of Yervoy for people like your mum.She was one amazing woman cause iher true grit was ingrained in her family.God bless Al
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- May 26, 2012 at 12:18 pm
So sorry on the loss oy your mum.Way too young.Will be in my prayers tonite.Keep the fight for funding of Yervoy for people like your mum.She was one amazing woman cause iher true grit was ingrained in her family.God bless Al
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- May 26, 2012 at 12:18 pm
So sorry on the loss oy your mum.Way too young.Will be in my prayers tonite.Keep the fight for funding of Yervoy for people like your mum.She was one amazing woman cause iher true grit was ingrained in her family.God bless Al
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- May 28, 2012 at 5:08 am
Ashley, I am deeply saddened to read about the loss of your mum. You have my sincere condolences.
I feel that the PBS decision to reject Yervoy is surprising and very disappointing. Apparently, this follows negative comments expressed by authorities in the UK recently. Therefore, I encourage you to keep campaigning against the PBS decision. We certainly need more treatments that are approved for late stage melanoma, especially here in Australia.
Take care
Frank from Australia
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- May 28, 2012 at 5:08 am
Ashley, I am deeply saddened to read about the loss of your mum. You have my sincere condolences.
I feel that the PBS decision to reject Yervoy is surprising and very disappointing. Apparently, this follows negative comments expressed by authorities in the UK recently. Therefore, I encourage you to keep campaigning against the PBS decision. We certainly need more treatments that are approved for late stage melanoma, especially here in Australia.
Take care
Frank from Australia
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- May 28, 2012 at 5:08 am
Ashley, I am deeply saddened to read about the loss of your mum. You have my sincere condolences.
I feel that the PBS decision to reject Yervoy is surprising and very disappointing. Apparently, this follows negative comments expressed by authorities in the UK recently. Therefore, I encourage you to keep campaigning against the PBS decision. We certainly need more treatments that are approved for late stage melanoma, especially here in Australia.
Take care
Frank from Australia
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- May 28, 2012 at 1:12 pm
I am so sorry to hear about your mum. I pray for you and your family in this difficult time.
Keep up the battle witht he PBS as I am sure your mum is looking down and so proud of you. I hope the researcher can do some good in your mums name also.
Judy
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- May 31, 2012 at 4:48 am
I am so sorry that you have lost your mom to this terrible disease. Losing your mom is especially hard as it is one of the closest relationships you have in life. Thank goodness now she is no longer in pain.May God bless you and your family,
Julie in Las Vegas
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- May 31, 2012 at 4:48 am
I am so sorry that you have lost your mom to this terrible disease. Losing your mom is especially hard as it is one of the closest relationships you have in life. Thank goodness now she is no longer in pain.May God bless you and your family,
Julie in Las Vegas
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- May 31, 2012 at 4:48 am
I am so sorry that you have lost your mom to this terrible disease. Losing your mom is especially hard as it is one of the closest relationships you have in life. Thank goodness now she is no longer in pain.May God bless you and your family,
Julie in Las Vegas
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- June 1, 2012 at 7:48 pm
Your story hits home. My sister just became wheel charir bound and is very depressed. she is only 38. My sister just started Yervoy. So your fight means the world to me! Unfortunately doctors are not giving us much hope and give her weeks to live, but we continue to have faith. I truly appreciate your efforts..God Bless you and your family.
Ana
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- June 1, 2012 at 7:48 pm
Your story hits home. My sister just became wheel charir bound and is very depressed. she is only 38. My sister just started Yervoy. So your fight means the world to me! Unfortunately doctors are not giving us much hope and give her weeks to live, but we continue to have faith. I truly appreciate your efforts..God Bless you and your family.
Ana
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- June 1, 2012 at 7:48 pm
Your story hits home. My sister just became wheel charir bound and is very depressed. she is only 38. My sister just started Yervoy. So your fight means the world to me! Unfortunately doctors are not giving us much hope and give her weeks to live, but we continue to have faith. I truly appreciate your efforts..God Bless you and your family.
Ana
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