Time for a new treatment
Comments
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Thanks for speaking up. Keep searching and fighting. Anger, fear are ok.
Early on in my BC adventure I read, " perfect love casts out fear ". Yes, it is from the Bible and I do not go to church, but I wonder if there is a God; sometimes more than others? The mental challenges and journey with this disease interest me, also lymphoedema and early interevention with laser and manual drainage techniques.
When you are having ongoing chemotherapy treatments and appointments, plus caring for loved ones, you have enough on your plate to deal with, but online forums can be effective.
There are some smart people on here.
Thinking of you and sending strength and hope and love.
Kathy.
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Oh boy, so so cruel, i really hate this desease, i have lost to many friends. amanda every fundraiser every talk i do as a community liaison from now on i am going to push for more research for those of you with secondary / stage 4
more and more women i know are presenting with secondary cancer and then again and again, i know that once we have this it hangs over our heads for ever many say once treatment is over we are cured thats it . i think not.
imanda we are all thinking of you and your family and hope that the new treatment gives you allot more time and that researchers come up with more and more treatment to help you and others.
We are all sisters on this pink site and we all send you strength, take care love Fran
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well manda i have everyone in Mansfield can care ready to help fight your fight for more research into metastatic cancer dont know what we can do but , will anoye as many polititions etc as we can.
come on pink ladies write your local members let them know we are a force not to be taken ligthtly. more power to the pink. h aha
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13/2/12
well i did it i have sent an email to Sophie Mirabella our local member and said about the need for more research for all those with metastic (secondary ) cancers , and that yes it is important to push the screening and research for early detection and treatment for early primary cancers but that there is a HUGE need for funding to push research into other areas. etc etc so i will see if i get a responce
thats number one will send many more yet.
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13/2/12
well i did it i have sent an email to Sophie Mirabella our local member and said about the need for more research for all those with metastic (secondary ) cancers , and that yes it is important to push the screening and research for early detection and treatment for early primary cancers but that there is a HUGE need for funding to push research into other areas. etc etc so i will see if i get a responce
thats number one will send many more yet.
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13/2/12
well i did it i have sent an email to Sophie Mirabella our local member and said about the need for more research for all those with metastic (secondary ) cancers , and that yes it is important to push the screening and research for early detection and treatment for early primary cancers but that there is a HUGE need for funding to push research into other areas. etc etc so i will see if i get a responce
thats number one will send many more yet.
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Dearest Amanda and ladies, as I always tell Amanda I believe "WE ARE ALL THE SAME", thinking about stages, statistics or numbers is simply selfish.
I strongly believe we need to organise something and make a formal claim, something big...somehting powerful!!!
I have a bit of background in Sciences so please count on me in anything you feel I can be useful.
I am here to help, I am happy to help and I feel we can conquer this illness no matter what stage we are!!
Amanda please let me know what can I do for you, look for papers, organise a database, contact ladies to sign something, anything anything anything you feel I can do please let me know!!
Love to all dear ladies!!!!
Leonor
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Dearest Amanda and ladies, as I always tell Amanda I believe "WE ARE ALL THE SAME", thinking about stages, statistics or numbers is simply selfish.
I strongly believe we need to organise something and make a formal claim, something big...somehting powerful!!!
I have a bit of background in Sciences so please count on me in anything you feel I can be useful.
I am here to help, I am happy to help and I feel we can conquer this illness no matter what stage we are!!
Amanda please let me know what can I do for you, look for papers, organise a database, contact ladies to sign something, anything anything anything you feel I can do please let me know!!
Love to all dear ladies!!!!
Leonor
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Just let me know what I can do . Debbie xxxxxxxxxxx
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Lyn Swinburne began BCNA with the power in numbers approach and see what she accomplished. so with all of us on here and all our family and contacts we must be able to ruffle a few feathers and get this ball rolling . sugestions anyone ,who do we lobby and how will we go about it. Fran
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Oh wow - you are amazing - all of you! I am so deeply touched by your response. I have briefly looked at the NBCF philosophy for how they distribute research funding but as yet have not looked at the proportionate income spend across the sector.
this is a quote of the research priorities for the NBCF:
Applicants requesting funding from the NBCF are advised to consider the following NBCF research priorities in their applications:
§ Research into prevention and/or early diagnosis of breast cancer.
§ Research addressing the social and public health needs of all individuals, and their families, living with a diagnosis of breast cancer. This also includes underserved populations such as women aged less than 50 years, women over 70 years, Indigenous women and women from culturally and linguistically diverse backgrounds.
§ Research addressing all aspects of advanced breast cancer.
§ Research encompassing translational research, with the potential to deliver outcomes that are clinically relevant or otherwise ready to be implemented to facilitate prevention or to improve the care of those with breast cancer.
§ Multidisciplinary research, which encourages research across disciplines and academic boundaries.
§ Research into novel health service delivery.
Particular consideration will be given to projects that are innovative, non-duplicative of other efforts and have the potential for national application.So - secondary cancer is there - yippee. I wish I was an accountant because I can't understand the financial reports. my very lay look at the income and expenditure seems that almost half of the generated income is spend on administrative costs - this seems too high. I am not sure of the distribution of funds. I don't believe that we have the issues here in Australia that there are in the US where one quite political organisation generates most of the funds and therefore controls research with it's own agenda.
I think what it comes down to is a philosophical change - that by finding answers to Metastatic Breast Cancer we will also find answers for all. We are small fish down here in Australia in a big sea. I am heartened that we have such a coordinated approach here in Australia and the goals of each organisation are quite clear. (NBCF, BCNA and the McGrath Foundation) - Although within each organisation I would love to see more vocal recognition of MBC.
It is also heartening to see the NBCF have a goal of zero deaths by 2030 - probably way too late for me but not for my daughters.
Early detection is helpful particularly for post menopausal women - not those of us pre-menopause. 8 women die in Australia every day as a result of breast cancer. There is currently no cure.
I believe that the pink washing of breast cancer has made it a "trendy" disease to have - oh you have breast cancer - that's ok, Kylie is ok, everyone who gets it is ok! There are great programs that make you look good and feel better, A bit of lipstick and a wig - there you go, chin up and get on. Oh I always buy the pink ribbon product...
Breast cancer is not a pink ribbon. It is a thoroughly devastating disease. It is disfiguring. It is lethal. It makes children motherless everyday. It robs children of their grandmothers.
I would personally like to see Breast Cancer Awareness month change from a month of awareness to a month focused on raising funds to find a cure - to inform the public that there is no cure, that beyond the pink there is a world of real suffering in everyday families.
I would like to see the rhetoric change - awareness doesn't cure anybody.
I would like to see all of us get up there and demand that research funds go to our talented scientists, to drug trials, to drug funding. I wonder how many women with EBC realise that the drugs that are now hopefully preventing the spread of their breast cancer were all tested initially on desperate, late stage patients in the hope that it might help them live a month or two longer and if not, it might help their daughters.
Yes, we have come a long way because of the bravery and action of many fine, amazing women over the past 20-30 years - let's not get complacent, let's move for action and let's all support each other without exclusion.
Love you all.
Amanda xx
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well it's all go. i sent an email to Robin Anderson at peter mac a researcher into getting better therapy etc for advanced BC and she sent this reply i didnt know how to attach it so copied it out. i am putting it here and hope others will write and lobby these people the more we write to and hound then we may actually get the ball rolling.
Dear Fran,
Thanks for your email, My research at Peter Mac is focused on developement of better therapies for women with advanced Breast Cancer.
Our main sources of funding are from N.B.C.F and N.H.M.R.C.
I dont feel N.H.M.R.C will listen to your protest and request for more help and recognition of advanced Breast cancer , But N.B.C.F always listen to advocates , so lobbying them could be worthwhile.
Also The Victorian Cancer Agency has research grants focused on different cancer streams , so impressing the urgency of more research into the plight of women with advanced Breast Cancer and better therapy developement would also be a help.
Also Maybe lobby send letters to Lyn Kosky as she has been speaking out about breast cancer since her journey recently, you could all push to see if she would be willing to atake a role in advocacy for more research funds.
just a few sugestions if i think of more i shall email you again .
GOODLUCK WITH THE ENDEVOUR ,
and GOODLUCK TO YOU ALL, and POWER TO YOU ALL.
Yours Sincerely.
Robin Anderson
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well it's all go. i sent an email to Robin Anderson at peter mac a researcher into getting better therapy etc for advanced BC and she sent this reply i didnt know how to attach it so copied it out. i am putting it here and hope others will write and lobby these people the more we write to and hound then we may actually get the ball rolling.
Dear Fran,
Thanks for your email, My research at Peter Mac is focused on developement of better therapies for women with advanced Breast Cancer.
Our main sources of funding are from N.B.C.F and N.H.M.R.C.
I dont feel N.H.M.R.C will listen to your protest and request for more help and recognition of advanced Breast cancer , But N.B.C.F always listen to advocates , so lobbying them could be worthwhile.
Also The Victorian Cancer Agency has research grants focused on different cancer streams , so impressing the urgency of more research into the plight of women with advanced Breast Cancer and better therapy developement would also be a help.
Also Maybe lobby send letters to Lyn Kosky as she has been speaking out about breast cancer since her journey recently, you could all push to see if she would be willing to atake a role in advocacy for more research funds.
just a few sugestions if i think of more i shall email you again .
GOODLUCK WITH THE ENDEVOUR ,
and GOODLUCK TO YOU ALL, and POWER TO YOU ALL.
Yours Sincerely.
Robin Anderson
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Oh good on you Fran, you have started the ball rolling. I am right in with this so any help needed just let me know. Lets go girls, lets make a big impact on this dreaded desease.
Cheers Jo xx
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Hi Amanda, All i can say is I'm here because of breast cancer and i am here to help fight for a cure. I'm one of the luckier ones and i am hear for those that are not so lucky . I am on board, lets push for a cure. Lets go girls.
Take care Amanda,
cheers Jo xx
Let us know how we can help and it will be done.
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