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
LOCAL MEMBERS OF PARLIAMENT
TO PROMOTE AWARENESS OTHER BC OR ABC GROUPS
oncology and radiation places put up notices re awareness
mcgrath nurses
major hospitals ie: peter mac in victoria research dept,
research depts in other hospitals.
most hospitals have sections that sort out grant and fundings etc.
NBCF / Cancer agencies /
Lynne Kosky member parliament.
other cancer agencies all states.
advertise the need / urgency / in local papers or radio explain why etc.
let other cancer groups know what we are trying to achieve.
re email addresses i can not legally just put addresses on this site but most can be googled.
LOCAL MEMBERS OF PARLIAMENT
TO PROMOTE AWARENESS OTHER BC OR ABC GROUPS
oncology and radiation places put up notices re awareness
mcgrath nurses
major hospitals ie: peter mac in victoria research dept,
research depts in other hospitals.
most hospitals have sections that sort out grant and fundings etc.
NBCF / Cancer agencies /
Lynne Kosky member parliament.
other cancer agencies all states.
advertise the need / urgency / in local papers or radio explain why etc.
let other cancer groups know what we are trying to achieve.
re email addresses i can not legally just put addresses on this site but most can be googled.
Love and light to you too Amanda! We are all in this together.
PS I will also be aiming to do some emailing this weekend.
- Fran I am wondering if you could post some links to email addresses. I've had a week of biopsies and medical appointments but am on the ball to spend some time tomorrow emailing. It would be great to have a list of people suggested to email. Joy - you raise some valid points re the separation of pre and post stage 4 and I especially agree with your comments regarding breast care nurses. I have received far less care from breast care nurses as a stage 4 patient when I was in a system that had multiple BCnurses than when I was considered EBC and I was inundated with information and support. The women with Stage 4 disease receive The Beacon with an insert that I includes stories for those with "ABC" - I don't believe that the general BC community receive this information. AnnMaree - I wonder if we can set something up for Victorian women to meet face to face though I believe Joy has met some roadblocks there - I don't see how we can be stopped from catching up for a green tea though... Better get the kids from school and to tennis. I love you ladies. Much love and light and despite my "nasty biology" I'm not quite ready to give up - I had 4 pretty awesome ones here at home but you have all given me another reason to keep on living and living well. Amanda xx
Hi again well i just got a wonderful responce from NBCF , i have requested permission to put the reply on here so once they agree will send to DI and see if she can put it into here for me,
the ball is doing more than just rolling girls get going.
Hi again well i just got a wonderful responce from NBCF , i have requested permission to put the reply on here so once they agree will send to DI and see if she can put it into here for me,
the ball is doing more than just rolling girls get going.
Cancer Voices Victoria recently made a submission to the Cancer (Reporting) Regulations 2012 Regulatory Impact Statement (RIS). The response from the Department of Health seems to indicate that there is a known data deficit in the area of collecting staging information and time to regression but that this will be addressed in the future.
I know the public system is mandated to report this information but I was surprised to read "currently the Regulations as they stand and as proposed under the RIS require this information from existing notifying organisations and will include private radiotherapy and day oncology centres in the near future."
How much data is being collected and never making it to a national data base?
It seems that the more we drill down into Stage 4 disease the more black holes we discover. How can decisions be made on data that is not truely representative of our experience?
If the switch is made to more research into Stage 4, then as others have said, all breast cancer patients will benefit.
Love the suggestion regarding an article in The Beacon, however most breast cancer organisations tend to separate their membership according to staging, eg. separate mail outs for Stage 4 women. Shouldn't all women have this information? What has divided us into pre Stage 4 and post Stage 4 women? We all have breast cancer! Even the latest publication of Verve (Arimidex users) had 12 stories of women who had survived breast cancer. Only one was at Stage 4, and you had to know what you were looking for to pick it, not openly stated! Not representative of statistics, should have had at least 3-4 articles by Stage 4 women. We are being marginalised even by the phamaceutical companies!
Agree with the comment regarding breast care nurses, I am currently raising this issue at my treatment hospital and requesting that they nominate a nurse with additional training for Stage 4 women. Our needs are different and because of advancing treatment options we are LIVING with this disease for much longer.
Getting off my soapbox and going out for lunch
With love
Joy K
Also I have noticed a lot of people who access the online group are victorians. Obviously it is encouraged in victoria. I would like to see a larger number of people with ABC accessing this website to give us a stronger voice.
It would be good if Breast Care Nurses were to receive more specialised training on the needs of people with ABC. I found the role often focuses on delivering information that is easily accessable on internet or bcna/cancer council. Following up people with ABC over the longer term is important, not just when you are in crisis or treatment phase.
Chemotherapy sessions and many days/weeks in hospital left me disappointed in the delivery of connectedness with health professionals.
We are being a Voice just by creating awareness and getting people stirred up.
An entry could be done for the inside story of the Beacon once ideas are summarised and continue to create awareness in the wider Advanced Breast Cancer community. Also a lot of Breast Care Nurses read these stories so that would target them too.
It would be good to gather specific things we want targeted which Amanda outlines in her entry above
'Particular consideration will be given to projects that are innovative and non-duplicative of other efforts and have the potential for national application. '
We need to check where the 'Holes' are in the Research.
I would like to see National Data collection for Advanced Breast Cancer that delivers information useful for future planning, research, and knowledge of treatment results including lifestyle choices,location mets,receptor types,treatment,details of disease progression etc. I spent months on internet trying to get some of this info and it is just not out there. (The founder of this online group had the vision to have national data collection for ABC - it can be read in her entries)
There are 'High flyers' in our community who either live a lot longer than expected or are even cured. No one speaks of the cured. Why are we not studying this group to see if there are any trends. However detailed info is needed.
I would like to see nutrition education made an integral part of treatment approach.I lost 12kg initially in my initial treatment due to the high grade tumors and chemo etc,and was encouraged to focus on high calorie foods to regain and maintain weight. Formal studies in Australia need to be done to show benifets of wholefood,organic diet as outlined in the Gawler foundation. Basic sense tells us our bodies need special nurturing with nutrition thru this grueling treatment that our bodies are put thru.
Just how much drug trials are going on in Australia or World for Advanced Breast Cancer. I would like to see an annual paper put out summarising all the current treatments available whether they are goverment subsidised or not. I want to be educated on what treatment is out there and make informed choices. Although I take all my questions to the oncologists I come away not gaining the information I am looking for. I too have children that need my love and care and I just dont have the time and energy to be consumed by this unending search for information.
you should send a condensed version of this to as many people as you can and nbcf etc macgrath foundation vic cancer agency. cancer council polititions. hits home.
and so so true.xx Fran
