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
Isnt it a great feeling when actually feel some one is listening. we will keep pushing.
Maybe a letter to the Minister for Health?
Thanks for your post Michelle
I don't doubt that there is work going on - as you said unfortunately it is painstakingly slow. We are fortunate to have clinical trials happening - I would like to see access to trials becoming easier in a country that is so widespread - I fear that many rural women do not get to access trials as easily as us city dwellers. I frequently look at the trials website - there is also a victorian one - http://www.cancervic.org.au/trials/ which often lists different trials also. On the link that you mentioned - there are currently 39 open trials nationally listed. It would be great to see more happening for women with triple negative disease and inflammatory BC.
It goes beyond trials though to those working in the labs. I currently have tumor tissue being tested by a lab in Queenlsand (government) - it is assisting the lab to develop testing which gives more detailed analysis of tumor tissue and hopefully guides treatment decisions with more accuracy - it is in R&D phase and these scientists are reliant on NHMCR funding - they also have some funding from the NBCF. Currently the testing that they are doing on my tumor tissue costs on average $10-15K per patient. My Mum is actively fund raising in Queensland for fund to go directly to this research project. This type of testing may lead to more individualised treatment in the future rather than the statistical roll of the dice used currently.
As I said before - I believe it is a change in rhetoric that is required and a refocus of intentions on finding a cure. So sadly your mother passed away in 1990 - 12 years later we still are no closer to a cure for stage 4 disease. I am so happy that fewer women get to stage 4 disease but for those that do, we still have no answers.
I am a part of the review groups and regularly read the research - you have to be informed to be your own best advocate.
Maybe by the time my girls are my age - there will be an answer. - I certainly hope so.
Amanda x
I love reading all the info you girls have provided us. Thanks!
As I am not from Australia, I was wondering if it is possible to write a formal letter requesting what we would like to be done and submit it to the parliament? Is it possible? I suppose if many many many of us sign it somebody will finally hear us!!
Amanda, what do you reckon, is that possible? does it sound a bit more powerful than a few e-mails? What do you think?
I love reading all the info you girls have provided us. Thanks!
As I am not from Australia, I was wondering if it is possible to write a formal letter requesting what we would like to be done and submit it to the parliament? Is it possible? I suppose if many many many of us sign it somebody will finally hear us!!
Amanda, what do you reckon, is that possible? does it sound a bit more powerful than a few e-mails? What do you think?
Hi Kathy,
Hope all is well wih you.
Take care.
Tracey xx
Hi Amanda,
I live in NSW so I wouldnt be able to catch up in Victoria. It took 17 months till I met someone in the local area with Advanced Breast Cancer despite requesting this on many occaisions. Why is it so hard?? We recently met at my home and enjoyed a green juice and healthy organic lunch together. In 2 weeks we will meet with another lady with advanced bowel cancer. We are all keen on living well and the support and encouragement has been nothing but positive. I have posted on my local area website to alert other women if they are interested in face to face contact.
I am probably attending the Ian Gawler retreat in april 10-20,2012 so wouldnt mind catching up for green tea if anyone is available.
A very good point was raised by Joy regarding the inside story insert not being made available to the wider breast cancer community. The articles in the inside story could be integrated into the Beacon without it being a separate insert. This would further educate and raise awareness of living with advanced breast cancer.
Also I would like to see an article in the beacon from the view point of people with ABC expressing need for specialised training for breast care nurses in the area of advanced breast cancer.
A very good point was raised by Joy regarding the inside story insert not being made available to the wider breast cancer community. The articles in the inside story could be integrated into the Beacon without it being a separate insert. This would further educate and raise awareness of living with advanced breast cancer.
Also I would like to see an article in the beacon from the view point of people with ABC expressing need for specialised training for breast care nurses in the area of advanced breast cancer.
I feel impatient with the data collection issue. This information is very important for clinical judgement and planning. I want to see more information collected than staging information and time to regression. There should be another way around achieving data collection. Why can't 1 or 2 people be employed to collect and compile this information.
This is a good topic for the beacon.
