Time for a new treatment

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.

Hi Amanda, Tracey and Amy,

Thanks for the blog. Thinking of you and others with ABC, who are living with and fighting for a cure for this disease.

Kathy. 

Hi Amanda,

I am so sorry to hear about your news.  Hopefully the Xeloda will help.  i am back on that at the moment and being reviewed in about two weeks.    Just make sure you do in fact eat before you take it.  Yoghurt is good.

I agree that more needs to be done for those with Advanced disease.  There seems to be so many more people out there now living with Advanced and for a few years too.

When i was diagnosed just over six and a half years ago, I contacted support groups and different departments.  They all seemed to write me off then and there.  The support groups told me they couldn't help me and some of the medical professionals (not my oncologist) heard my prognosis and just went oh well you'd better get your affairs in order because this is going to get you soon.  The "mental anguish" that this places on a person with an already altered lifestyle and length of life is terrible.

We are still here and there are many treatments still available to us.  I know a cure would be wonderful and I pray for it every day, but I am also grateful that there are so many treatments out there that even though they cause us further illness and new and different problems, at least we are still here.

I want to be able to see my girls all leave school, my youngest in 3 more years and I would desperately love to see them married and with children.  A lot of people don't realise how these things in life are so important to someone fighting this disease and so many other chronic and life threatening illnesses.

Sorry I went off on a tangent there, but I have actually spent the day with a friend of the family who is fighting multiple myeloma and these were some of the discussions we were having today.  Funnily enough he has exactly the same thoughts that we all seem to have too.  Different cancer but the thoughts are all the same.

I wish you all the best Amanda.  Stay as strong as you can be.  We are all thinking of you.

Take care

Tracey xx