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
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
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.
