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
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.
I am so sorry to hear that you didnt get the results you were expecting. I know what that's like...devastating! You have to have hope though, that this next treatment will be the ONE for you....because without hope, we have nothing. It's time for your treatment to take a detour...that's all. Your body is craving something new, so a new treatment regime it shall get!
Together we will embark on a new journey Amanda, filled with hope. I am holding your hand from a distance, and we will face this demon head on, with determination and courage! We have to believe the best is yet to come....for our sakes and for our children's sake.
Like me, you have a new plan of action...let's have faith that they will both work and blast this pesky disease to smithereens! Take care and keep up the good fight! Love Celeste ?
Amanda and Joy,I couldn't agree more with what you have both said. Anyone with secondary breast cancer shouldn't be expected to be an advocate. Just day to day living with family and coping with ongoing treatments is enough. I think alot of women who get through treatments for early breast cancer just want to move on and forget about it,go back to la la land. What we all need to realize is that any one of us could wake up tomorrow with secondaries.We shouldn't be abandoning our sisters with secondaries but taking up" the cause" in whichever way we can.I think we need to question where all the pink money is going.The Mcgrath funds are going specifically to train breast care nurses and BCNA provides this website and other direct support to women with breast cancer - this we know- but what about ALL the other funds raised? where's it all going?
Seems to be more and more young women being diagnosed with bc. They should be enjoying life and children.I don't want this to happen to my daughters. I for one,am staying on this BCNA site to help others but also to maintain a united front.Power in numbers and by networking/sharing info we'll build up a formidable group. Ok,I'll get off the soapbox now!
Tonya xx
