Forum Discussion
Time for a new treatment
Hi everyone
Some of you know I was expecting results yesterday. Unfortunately they were not good. I guess we knew it would eventually happen but you always have that little glimmer of maybe it's all gone. I feel no different. So I have progression in my lungs. More spots and existing spots bigger. They don't tell me how many there are because they are 'numerous' - now a few are over the 1cm mark. No cough, shortness of breath or pain - completely asymptomatic. Skin met fine, lymph node the same. Bummer!
Of course I have had a big cry. I am grateful for 7 months of the disease doing nothing - greedily I wanted more. remember that image of my son's wedding - somehow it seems a long, long way away and out of touch right now.
But I am dusting myself off and picking myself up of the floor and moving onto the next treatment - Tykerb and xeloda. I will also have a biopsy of my lungs next week to see if we can get some more information on these lung tumors.
I have too much to live for. I need to be here to guide my children through their childhood. They shouldn't have to see their mother go through cancer.
Perhaps I am going to be controversial but I have to say a few things.
- money needs to be spent on research into metastatic disease and finding a cure - now!
I have more to say on this but my son has woken up and come into bed with me for a cuddle and that's more important right now.
Much love and light - never give in - choose life!
Amanda xx
59 Replies
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
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
Just let me know what I can do . Debbie xxxxxxxxxxx
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
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
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.
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.
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.
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
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
