Australian Sisters
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Hi Mandy - so lovely to hear from you - I still think of you almost every day xoxo
I love the term "Beyond Pink" - Wildplaces - that's really creative. Maybe we should all band together and take it somewhere so that we can raise money for research rather than "awareness"!!
Traveltext - I grew up in Wollongong! I spent 28 years there before moving to Canberra. Who knows, I may even know Rob - especially if he's been in Wollongong a fair while!
Trish
xoxox
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Trish,
Thank you!
😊 to me it's about the following:
Breast cancer affects women AND men.
Everyone has a different breast cancer - different cancer biology, different host, different treatment avenues by choice or opportunity.
The lower socioeconomic groups (single parents, unemployed, emigrants, Aboriginals) have a worse prognosis on multiple levels.
Women and men with early stage cancer need more a regimen: surgery, chemotherapy and radiation - they need a cohesive way through the cancer back to family and work life.
Women and men with stage 4 cancer need treatments that do not undermine their already frail health - need REAL long term medical, emotional and financial support solutions, and need hope is that appropriate government funds are channeled into unravelling the biology of this conglomerate of diseases.
Finally our way of thinking about advanced cancer treatment needs to undergo a fundamental paradigm shift.
The word terminal forms an assumption that is cruel and unkind and should never be used. Does one tell a patient with a brain aneurysm he is terminal? No, one explains the risks of surgery and gets on with the work of surgery. The patient understands there is a death risk but does not go to surgery believing "I am terminal".
In twenty five years of practice I have not yet met a patient who is unwell and does not perceive how unwell they are. Families may need time to adjust to this, but patients get it. They do not need to be labelled. If they need to talk about death they will ask. But terminal is a section of a train station, not a person.
😊🌷🐣
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I sound a bit intense but I am really quite fun 😉
Seriously 😱🙄just wishing everyone finds a best way for them through and past thisbeast.
I love Chrissy's " I found my peace and that gave me strength" so true!
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Naw....thank Wildplaces, I love your intensity and whole heartedly agree with you. May I ask, before being dx yourself, as a practitioner did you have the same ideas on terminology and treatment as you do now?
I know a lot do but unfortunately the 'system' doesn't allow for anything to change without a whole lot of proding and poking from a multitude of very active activists and they seem to be sadly lacking when it comes to breast cancer. As horrible as it sounds, I am of the belief that until those with the power are effected personally or someone very close to them is effected, there is a tendancy to disregard.
Doing well here and am about to drive two and a half hours for a massage as my back is driving me nuts. Just one of the perks of country living......lol.
Take care all and I can't wait to see you all in April.
Love n hugs. Chrissy
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😊
Yes, but my focus was different. It was women health and the operating theatre.
It still is mostly.
Mercifully under the Australian Anaesthetic College guidelines there is no described need to be what I call "death specific" WHEN risks are evident and treatment choices limited. Plainly put, you do not have to tell a patient that has lost half of their blood volume that they may die - it is sufficient to say your life is at risk because of bleeding and these are the steps that need implementing. Assuming the patient is conscious and able to make decisions about own health, in my experience you are given one of three responses:
- those who don't want to talk more, depending on treatmenttime pressure you might give another opportunity, a little later
- those who want to ask but are shy/fearful/traditional - usually they look down and say they understand but pause - waiting for you to say - is there anything at all you want to know more about/ask - opens up a discussion
- those who plain ask - am I going to die? followed by " I want you to do this" and it's not always what you might assume.
I always hated labels - for one, sooner or later you are proven wrong.
As to breast cancer - I think the whole women's health in Australia is heavily under represented.
I wouldn't wait for change to come from medical ranks - we are wildly disorganised individuals on some levels - business models of any kind are not taught in medical school and perhaps they should be.
The majority of hospitals are lead by accountants or lawyers, occasionally nursing staff with MBA - and budgets have a huge role. I could go on a little but it's outside this thread scope.
Can we get it back? Old fashion Medicine? Do we want to?? Ahh I think that train has gone but we can perhaps learn to communicate better, more efficiently with patients AND among ourselves AND with other health professionals, government officials, pharmacetical companies, research fund raising bodies.
That would take a shift from the traditional concept of measuring health care delivery of a good/great doctor (individual compentence) treating you to a good/great team treating (team compentence) you.The caviat (this work is from Canada) is that failing communication (for a variety of factors none of which may be directly related to individual compentence - time,human, geographical, technology - therefore no point just fixing one individual) you can have competent individuals making up an incompetent team.
I am done for a while I think...
Hope your back is better. I love the country.
Well wishes to all,
😊🌷🐣
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Chrissy, the mets activists in the US are very active when it comes to lobbying politicians and medical authorities for a better deal for Stage IV bc folks. Think MetUp and their classic die-ins for dramatic effect.
Wildplaces, you have a great overview of this disease from your perspective as a doctor and a patient. I know two other such people, a male bc patient and surgeon in the US, and a female breast surgeon in the UK. They are all over Twitter with their experiences and observations. I have to say that their experiences tend to be the same as everyone's as I'm sure you'll agree.
You've perfectly put the situation for all bc patients in the health system as it operates in this country, and I can't help thinking that those of us who move past being passive patients and become more activist in advocating for our own medical treatment (and for others) have a more rational outlook and even a better attitude towards outcomes of the various stages of treating this disease. This so even when it comes to making a plan for possible late-stage treatment.
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Thanks for that Traveltext - Rob and I are the same age, I'm pretty sure we went to different schools, otherwise his name would be familiar (I think!!) however with my memory, anything's possible, if you let him know about this thread he might want to come on and "talk" with us
Wildplaces, you have hit the nail on the head, and no I don't think you are too intense, I think it's wonderful that we can all come on here and have a discussion about almost anything, and perhaps I should remove the "almost" lol. I didn't really think about the implications of the medical profession all working - not exactly in isolation of eachother, but not exactly as a cohesive team all the time. Teaching business models in medical school - that's something I would have thought should be a given, seeing as how many doctors end up running their own practice. Does anyone know if BCNA actively lobbies government? Do they raise the issue of breast cancer as a chronic disease among the medical profession at all levels? Is there a mechanism to do that? If not, is there a place for an organisation that does that as well as raising money for research and maybe a one-stop-shop for breast cancer?
You know I met three women with breast cancer yesterday. The place I'm working at has almost 2.5K people working in the one huge building (it's a brand new lovely building too), and those three women were just in my little corner of one floor. It made me wonder how many other women and men there were in the building. So I'm organising a lunch time get together for all those who want to come and have a chat over lunch and not have to travel to the city or even leave work. I'll let you know how it goes once it's organised.
Chrissy - hope your back is feeling better. I hear you. Mine has been playing up a fair bit lately, but I've just added it to the heart damage, liver problems and the joint pain and fatigue lol!
Trish
xoxo
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Traveltext
For me that is VERY very good. I do not write that lightly.
Thank you for sharing. 😊 Use it as you see fit - I meant it when I said all yours. So, again thank you!!
Trish,
What a lovely idea - the lunch - please let us know how it turns out.
😊🌷
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Wildplaces, thanks. I'm going to use #BeyondPink as a Twitter hashtag once I've worked up some more content.
Trish, In a building with 2,500 workers you could expect to find around 100 women and one man who have had BC at one time or another. Good luck with your lunch group!
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Traveltext, that looks great! I have to admit here (to my shame lol) I don't use twitter, haven't gotten into it at all. BUT - I'm pretty good at designing webpages! Let me know if you want to go down that road, and I'm in
And I keep forgetting to ask you - if you know about our yearly get together? We are meeting in Adelaide this year in April (after Easter) if you and Rob want to join us you are very welcome
Trish
xoxoxo
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Trish, Twitter has a big bc scene and that's all I use it for. Sort of like preaching to the converted, but the people I follow are mostly patient advocates, bc institutions and advocate groups, etc. Like here, I'm the bc guy blowing the whistle when something applicable comes up. It seems a bit dinky, but I have over 500 followers and those I follow are always putting up next stuff, mostly links to articles and blogs. I'm there as #malefitness. Good that you know about websites, that's my trade. I built a site for the Pinktober Revolution folks here on BCO a couple of years ago: www.pinktobersucks.com
Gosh, you have get-togethers, that's pretty organised. Keep me posted when you have dates. I'm sure it would be a fun event.
Cheers, Rod
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Trish,
To answer your question about BCNA and government - yes BCNA as well as professional medical bodies actively lobbies government to get new treatments approved for PBS in Australia.
The one that is running now is including Palbociclib or Ribociclib - it is TGA approved so you can get it for about $5000 a month but not PBS - so most people can't afford it outside trials. The next submission will be March, results out in April but I am not holding my breath, we all thought it would get through in November.
It was particularly disappointing since there was a huge petition lobbying for it and Quentin Bryce went to Canberra to support it - so....
From the horse's mouth, a Professor on the Advisory committee for Palbociclib " It is so damn expensive". It seemsa bit of a game from Pfizer as they they are pushing forward with the PALLAS trial - randomising in Stage 2 ( so they have the drug) and available in Australia but they have no sponsorship program (DEC last I looked) for Stage 4.
The Southern Hemisphere still has no proton radiation facility ( lower dose, more precise, less tissue damage) - they are in the tens of in USA, and most Western European countries have 2 or 3. This affects not only breast cancer but most of the brain cancers, including essential work in paediatrics. Plans for having such a facility in Adelaide seem on hold??
What is disappointing is that we actually DO have the money.
((There is a frightening amount of waste that takes place in most hospitals mostly due to specific budgets that do not cross areas, long shifts and time pressures. It's hard to explain unless you live it - but a collective consciousness to be more frugal and demand more precision and higher quality in all would move mountains. To give you the simplest of examples - admissions run low on staff - no idea why the rostering is such, most/ALL of us write to management about it - to then prescribe a Panadol premed orally (cost cents) would be to drive the poor nurses crazy with one more thing to do on top of....so we don't ...and give it intravenously in theatre ( $4 last I looked). Not only that but half of the time patients arrive in theatre with 5-10 minutes delays meaning and entire team of 6-7 people have exchanged news about the week/end while waiting - all because the budget for triage does not allow 1 or 2 extra people.))
I don't twit/Facebook - I am pretty quiet usually - I ended up on this site because a lady from York had a very interesting presentationto a local recurrence and just sort of stayed.
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Thanks Wildplaces for the explanation. I need to give this all some serious thought, and see if I can come up with some ideas that are actually do-able and practical that we can maybe take forward as a starting point.
Traveltext - yes we have dates - 13 - 15 April in Adelaide. We normally arrive on the Friday sometime, and go home on the Sunday. We find a place that has apartments, and some of us share a 2 or 3 bed apt, and some have their own rooms - each to their own. Seriously - it would be great if you could join us. It's a lot of fun, we laugh, cry and eat (we eat a lot lol) have a wine or two and generally keep each other sane.
Trishxoxo
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Wildplaces, I believe the Adelaide proton radiation facility will be up and running in 2020: https://www.australianbraggcentre.com/#outlook_gro...
Thanks for the update on the BCNA campaign for Palbociclib. I've seen mention of this in a recent email and I've contacted my local Federal member. Is this a drug that you personally could be eligible for? I'm not sure where you are up to with treatment nor do I know your diagnosis stats. It's fine if you don't want to share them, of course.
Trish. My daughter and her family live in Adelaide and it may be that I would be visiting then. Will keep you posted.
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no stats - they were up but they have disappeared ... I had some email problems in past too - the public bits are ticked I have checked...if I can't get it working I will email the mods...
I am Stage 2b/ 4 cm but skinny... IDC/ 1 node/13 - mastectomy, no recon by choice/ AX clearance and that was when the scans were thinking it's about 2 cm with no nodes - Chris Pyke - just brilliant, AC/Taxol dose dense, follow debate about rads - in the end threw the kitchen sink at it - rads at Wesley. Riding with relatively few side effects on Arimidex.
Have hair - curly 😊 and back to full time work for about 9 months now.
Palbociclib
Icon Care centre on the GC and Brisbane have the Stage 4 Palbociclib trial.
https://clinicaltrials.gov/ct2/show/study/NCT02679...
Other state centres in the link. All recruiting.You will note the "women" part of the tittle.
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Wildplaces ..I had my mascetomy done at the Wesley ..and my twin grand-daughters were born there .The staff in both sections were great ! ..I go to the Breast Clinic at the Holy Spirit Hospital for my scans now . Their breast team are SO kind ..I'm always a nervous when I arrive !!!!!
I would love to come to the get- to- gether but I think there's too much going on this year .We have sold and renting while building our new home ...We have built before when we were in our 20's but I don't remember it being this stressful 😵....also Hubby's 60th birthday party is on Easter Sunday ( gosh ..where have the years gone ? I've been with him since he was 15 and I was 14! )..and because of renting we're having the party at a restaurant instead of at home ...so costing us a lot more ...so don't think I can do the trip ...
Hugs to all
Edited for spelling mistakes .
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Wildplaces. Thanks for your stats. Good on you for having the rads. No recon, well that's standard for guys. Not even offered, in fact. So glad you are back at work. I had my prostatectomy at the Wesley (mx at Selangor, Nambour by the brilliant Emma Seccomb) ) and my neighbour is an anaesthetist who was worked at the Wesley (and elsewhere). I'll pass the Palbociclib info on to mets pal Rob.
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Hi all, I’ve just found this Aussie thread after having been to this site a number of times. I don’t know how it took me so long! Wildplaces it’s interesting reading your perspective. I applied to Penelope B as well as PALLAS and missed out on both, sadly. Now I’m debating if I should pay the exorbitant $5k a month for Palbociclib, or just cross my fingers and hope for the best. I hate BC!
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Newnorm,
I am aware of both trials. Where are you?
Have you talked ovarian suppression and aromatase inhibitors vs Tamoxifen with your onc?
Where you screened and scanned for PALLAS?
The jury is very much out on Palbociclib for early disease, no one that I talked to could give me a clear answer. They seem to fall into two groups: enthusiastic and cautious. I had PALLAS (not necessarily the drug) on the table but I was concerned about tanking my neutrophils for two years. I don't know how I would call it at greater nodal spread - I REALLY don't. Many women need the lower dose ( see Ibrance thread) - not 125 but 100 or 75 and more then 1 in 4 weeks free, so ifyou decide to follow that route it may end up being less then $5K with a good pill cutter. I hate BC too, and IMO marketing ANY drug for cancer at $120,000 or thereabouts a year is just...
If it gets through in April the PBS will be for Stage 4.
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your other option migh be
https://clinicaltrials.gov/ct2/show/study/NCT02679...
It is the Abemaciclib trial - Australia recruits.
Diarrhoea but not usually low white cells.
You fit the criteria for lymph nodes but you need to have NOT had more then 12 weeks of endocrine - which you probably did not because you had surgery and then radiation following mid year 2016. It's unusual to have endocrine therapy while having rads, most start after. Have a think if this is an option. Speak to your onc.
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Newnorm, welcome to this thread, it's nice to see you here, although I wish you didn't have to be.
I meant to post the other day, when encouraging traveltext to come to our Adelaide get together that anyone is welcome, so wildplaces and newnorm please know that we'd love to see you too if you can manage it :-)
Lucy - it would have been wonderful to meet you, but I understand completely. I'm doing everything I can to be able to get there, but sometimes money is a problem - we all have that issue - so don't feel bad.
Wildplaces, your information is gold! Thank you so much for your input.
Trish
xoxo
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Thanks Wildplaces and Trish
My neutrophil level was too low for PALLAS and so I ran out of time. I missed the cut off for Penelope B as they met their quota before I was processed.
I’m just about to switch from Tamoxifen to Femara, however I’m a bit concerned about whether I’m truly in menopause or if it’s still chemo induced. I’m officially 7mths from end of chemo. Onc didn’t offer any ovarian suppression.
I’m in Sydney Trish so I can’t make Adelaide unfortunately. Enjoy!
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Hi all and welcome Newnorm.
Sorry I've been a little quiet but it's been a busy and tough week or so. Been very emotional as we lost our little fur baby.......she was almost eighteen. No matter how long ones tells oneself that each day for her each day is a bonus, it doesn't soften the blow when those days run out. Still a bit teary but I'll get there.
Yes everyone is welcome at the get together, just let me know if you want to be included in the accommodation booking or woukd like to take care of your own. It's a really good relaxing weekend and perfect for putting names and faces together.
Wildplaces keep coming with the information it's fantastic and much appreviated.
Traveltext, you are a brilliant advocate.
Time for me to get moving again, lots to do with little time to get 'er done.
Love n hugs. Chrissy
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Newnorm, I see your stats are very like mine and wonder if Palbociclib is really necessary for you? In other words, missing the trial or skipping this drug might not have the repercussions you think.
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((( Chrissy )))...sorry to hear your sad news ..I know how awful it feels ...
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Thanks everyone for the kind welcome.
Traveltext, thanks for your comments. My onc is hoping to get more clarity from the trials by May. Quietly I’m pleased I didn’t get in because I’m actually feeling pretty good now and didn’t really want more toxic chemo in my system. I also am trying to get on with life post treatment and wasn’t looking forward to the inevitable hospital visits and blood tests. So maybe it’s for the best. Xx
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Good news. The result of the poll of BCNA members about changing the newsletter name from The Beacon to Pink Lady was that The Beacon remains. Thanks to those here who voted against the name change.
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Yay!!!!! Just show what the power of numbers can do.........great news! Thanks Traveltext!
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