Australian Sisters
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ITop of the morning to all,
Lucy 😊
I posted this link on an immunotherapy thread. I can not post link direct to a Vimeo.
The talk is by Fabrice André - "overcoming resistance through genetically informed investigational cancer therapy"
It's a good talk - packed with info, I had to sit through it a few times and I am still learning from it. And he has a French accent - it did not bother me but someone from the States could not understand it. The stuff on early stage is in the second part of the talk - he starts with what we can learn from metastatic breast cancer.
The short of it is - the f...ing thing evolves - whether it does so by mutations and/or by clonal selection is an ongoing question - and whether metastatic cancer is a result of one clone or multiple clones in the primary tumour is another question. The hard fact is that after some time point ... - what point/ what happens - the more you throw at it the cleverer it gets to survive ( referred to as high mutational load). But most of the time early disease isn't as smart. And if you could identify what makes it likely to get smart - what mutations/clones make it more aggressive then you might have a chance at shutting down at least a good part of the 20-30% chance of relapse.
There are of course exceptions - ahhh - early on ...some/many women have cancers with the potential to get smart and nasty - how do you select those based on genetic testing and then how do you target this strength to cut them off. ER status is just the first layer of that behaviour. In late disease some women do not develop resistance readily/ and do better -why???
I am a clutz and I get easily lost in nomenclature - my big thing when following any treatment is does it make common sense - it is logical ??
For those wanting more on resistance - here is a fair sum up.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC46660...!po=17.1875
Somewhere on page 13 - in the mist of a lot of shit I don't well understand - something caught my eye. Again...I knew this.
Epigenetic modifications are reversible modification in gene expression without changing the DNA sequence that can alter receptor activity.
Exercise - moderate for health status and regular - changes epigenetics.
Hugs to all,
😊🌷🐣
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Happy Easter all, I hope you had a joyous one!
Wildplaces - we are so lucky to have you in our little group. I'm going to have to read it all when I feel a bit better - I've got a mild dose of hubby's tummy bug, so we really are a good pair at the moment.
Carol - how are you? Are you comfortable yet?
Kylie - i'm still keeping you in my thoughts.
Trish
xoxo
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Trish,
Thank you.
The truth is I am trying to learn myself and it's a very steep curve - I am being helped and directed by these forums.
A resubmission for at least of the CDK4/6 drugs to be av has been made to PBS March 2018. We should know soon but I am not holding my breath - to be honest I would back any politician who supports Metastatic Breast Cancer - far too many women ( and men ) die far too young of this. I can't get how it is too expensive in a country like Australia - heck where does the health dollar go??
Can someone tell me Faslodex is not PBS listed either ?? It's TGA approved but there is a price to get it?
And has been around for 7-8 years....if not more.
(At this pace there will be CDK7 or CDK12 on the market and we will still be waiting for Ibrance.
I agree it is not the panacea to all evil but it's a good tool and women should have access to decide whether they want to take it or not,access that does not depend on the price of the house they live in)
😊🌷🐣
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i can see a social media a comic strip - rich house poor house - guess which one is flying the Ibrance flag - ok, I am a little angry and perhaps unkind...bugger it
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Hello, new to this forum, thank Trish for letting me know about it.
Diagnosed a year ago and have progressed through the normal courses of treatment for my cancer; chemo, surgery, radio and hormone therapy.
I am looking to connect with other women in Australia who are participating in the MonarchE trial (early breast cancer) on Abemaciclib a CDK4/6 drug. I am hoping to find them on here. I’ve been fortunate enough to be selected on the trial but would love to compare others experiences who are also on the drug.
Happy to answer questions about it for other who are not on it and want to know more.
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hi surfangel,
Trial below - has multiple locations across Australia so should be ok to access.
https://clinicaltrials.gov/ct2/show/study/NCT03155...
If you are high risk early stage call - trials need people to enrol in them so your inquiries will more then welcomed. Has areasonable inclusion criteria - which all can check out on the site - 16 months from surgery and less then 12 months of endocrine therapy.
I was randomised to placebo in the PALLAS study - which is Palbociclib in neoadvuvant setting - the criteria is a little looser - so you don't need 4 nodes or greater then 5 cm or ....
There is an Abemaciclib thread in the Stage 4 only Forum - reporting on side effects etc.
I ?? the Phase 2 trial was
http://jhoponline.com/sabcs-2017-breast-cancer/173...
Although it is early to say - the evidence is mounting that in high risk early stage there may be benefit. Isn't that a politicians phrase🙄😱😨...
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OK - just got of the phone with Astra Zeneca on Faslodex - Fulvestrant.
It has been available since 2006.
It does not have PBS approval.
It can be sourced by private script only and although it differs slighltyfrom pharmacy to pharmacy the average price for two ampoules of 250 mg - monthly shot - is $800 Australian.
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Thanks Wildplaces. I am already on the MonarchE clinical trial and randomised on the drug, through Lifehouse in Sydney.
Yes I had found that thread on the Stage 4 forum and have been following that closely since February, and taking note of the stuff they are doing to lessen the side effects. However I cannot participate in the forum as I am not advance stage cancer. Hence why I am looking for others who are also on the same trial, so we can connect and support.
The positive evidence of the effects of the drug as described on the Stage 4 forum is why I am sticking it out with its side effects. Unlike the other two drugs CDK drugs available, Abemaciclib doesn’t lower your white cell count as much. But the diarrhoea is a quite annoying.
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This is a copy of the letter I just sent BCNA.
Dear Sir/Madam,
Given the recent media attention to CDK4/6 inhibitors and the ongoing petition to make these drugs available to ALL advanced breast cancer patients in Australia - I came to question whether Fulvestrant was PBS approved.
I discovered that it was not.
After a discussion with Astra Zeneca it appears Fulvestrant is available privately at $800 per 2 ampoules 250 mg/ monthly shot.
The drug has been available since 2006.
What is distressing looking at PBAC agendas, is the lack of a current application for Fulvestrant to be PBS listed - does that mean Astra Zeneca is not even applying for Fulvestrant to be considered??
Fulvestrant stands in as second line therapy for many metastatic ER + ladies.
What action does BCNA take on this matter?
Kind Regards,
.... so watch this space.To be fair BCNA has template letters for members to be sending to local MP/senators in support of making the CDK4/6 inhibitors available outside trials.
Should any of you find a moment consider this - the letters are already formulated.
https://www.bcna.org.au/news/2018/02/join-our-camp...
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😊,
Immodium of course. And try peppermint tea - a few per day. Occasional chamomile and a gentleprebiotic/probiotic .
I know after all that intense stuff - I come with peppermint tea...
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A big shout out to all my Aussie sisters. I was recently diagnosed, and wondering if any of you are on the Kisqali (Ribociclib) aka Spark access program? Would love to know how you are progressing
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Kanga-Roo and Surfangle ..Hi and Welcome !
Wildplaces..Thanks so much for your explanation ..it's such a lot to take in .!! Realising how clever cancer is is like a horror movie :-(
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Hi Roo!
welcome to our little part of the bco world. Where abouts in Oz are you? I'm in Canberra. I'm sorry to see you are stage IV. One of our sisters here, Chrissy is also stage IV, and she's a wealth of knowledge and may be able to help you. Wildplaces is also a wealth of knowledge.Trish
xoxo
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Thanks for the welcome😁
I live in Adelaide. I’ve just turned 60, post menopausal and was lucky to be put on the Spark access program. I have just finished my second round of Kisqali and am looking forward to my week off. Everything feels a bit surreal at the moment. My breast lump has gone from quite pronounced to I cant feel it now, so assume the meds are working. My liver met is minuscule at this stage, so hopefully it can be controlled. I have an MRI on 19th, so hope I will know more then. Looking forward to learning from you all as we share our journey through the good and bad
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Chrissy is in South Australia - Burra, she'll be along soon to welcome you too.
Trishxoxo
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Trish,
Thank you for your patience and kindnes.
I am rather very new myself to this thread - and I should have introduced myself a little - I am almost 50 and live on the GC. Roo - welcome - I found much support here.
FASLODEX
To round up what I call the Fulvestrant debacle - AZ has not submitted for PBS approval since TGA on the basis that AZ feels their submission would be rejected by PBAC ( Pharmaceutical Benefits Advisory Committee) on cost effectiveness. Rather bizarre since there is no comparative drug cost - fulvestrant being unique in mechqnism of action. This has been, despite both BCNA and MOGA ( Medical Oncolgy Group of Australia ) urging them to submit an application for PBS approval several times since 2010.
AZ does offer an access scheme and I am being told the overall pt cost through that is around $2500. This being better than the $800 a month private script solution.
I am guessing (and in the absence of a cost effectiveness proposal being presented to us - it's a an uneducated guess) AZ feels that it is getting enough $ for the drug in Australia without the added complication/cost of a PBS app.
If I sound all dull and dreary - it is not - there are MANY good things about our Medicare/PBS - we do get pretty good access to follow up, bloods and scans thorough Medicare - we also get a good shave of high end clinical trials - we are small in numbers so easy to connect for referrals, although distance for some is a big issue
PBS is set up not to spend money for just any drug that might show some small and poorly documented benefit to its predecessors - that works for a lot of medical issues/new drugs. I am not one to be easily swayed by new trends.
The problem with cancer medicine, it is fast moving since genetics and immunotherapy have hit the field. Cancer patients need access to those latest trends. IMO that should have been one of the BIG points of discussion in the 2015 Senate " Availability of new innovative and specialist cancer drugs in Australia
In cancer the previous comparative drugs usually have horrid side effects - given the last 15 years of science advances - access to newer drugs is essential for quality of life independent of OS data.
The quantitative model PBAC uses for cost effectiveness assessment breaks down when used in cancer therapy.
I am done for a while.
Apologies for my ranting and post splurge ... and promise all to tell you about my three chooks that I love dearly next time...
😊🌷
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Wildplaces - all ranting is allowed on this thread, no matter what the rant is about.
Are you needing fulvestrant for yourself? I must admit, I'm a bit out of all the new research on bc. Which is silly really as I've already had three different sorts of bc - it appears my body loves to make breast cancer.
I'm really looking forward to hearing about your three chooks!
Trish
xoxo
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No - and to be honest if I did, I could afford it either under access or paying for it - I work, get payed well and with the exception of travel I am not a big spender.
It's second line therapy in Metastatic Hormone responsive Breast cancer - either alone or in combination with the CDK4/6 inhibitors. That means when AIs fail - it's Faslodex and then chemotherapy oral or IV. The chemotherapy might resensitize you to hormone therapy ...and so it goes.
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Wildplace ...you show me your 3 chooks , and I'll show you my 2 ...Henny and Sally ... "my girls " 🙃🐔🐥
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Top Jenny - bottom Hannah & Penny - love them to bits!😊🐣
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Anyone know if Y90 is available as a treatment option in Australia?
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Yes, but do not know specifics of its use in BC mets.
It is used in Australia for mets bowel cancer (liver mets) so the technology exists.
If you are near Melbourne or Brisbane and need a name pm me.
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I love chooks! When we were on out 8.5 acres we had a dozen of them. It was very therapeutic to go and tell them my troubles and listen to them gently clucking at me :-) We had a rooster too for a while and he hated me with a passion. Apparently there's a pecking order (pun unintended) with roosters. My hubby was at the top for some reason (male maybe?) then the chooks, then me. I kept telling him I was going to make stock out of him, but he always ignored me and hid until I wasn't expecting him, then he'd attack me. Boy - can those spurs hurt! We used to take them off, but they always grew back.
Funnily enough, I did miss him when he died. He looked after his girls really well.
Trish
xoxo
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Wildplaces...HaHa ..I just love Jenny , Hannah , and Penny 🤗
Trisha ..ahh ..another chook lover 🙂
Presenting Sally ( white ) and Henny 💖..and Clucking-ham Palace that hubby built for the girls :-)
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Wildplaces thanks for the info. Im in Western Australia. Im attending at BCNA conference on Saturday so hopefully I will find out some more info.
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Tennille,
Closer then I thought. It's an Australian company. I did not know that
https://www.sirtex.com/eu/clinicians/about-sir-sph...
And one of the lead investigators is an Prof of Oncology from Perth. Granted the work was mets to Liver from bowel Ca.
https://www.sirtex.com/media/134438/dr-guy-van-haz...
Let us know what you find out at the Conf.
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Tennille,
Closer then I thought. It's an Australian company. I did not know that
https://www.sirtex.com/eu/clinicians/about-sir-sph...
And one of the lead investigators is an Prof of Oncology from Perth. Granted the work was mets to Liver from bowel Ca.
https://www.sirtex.com/media/134438/dr-guy-van-haz...
Let us know what you find out at the Conf.
(? some reason it double posted - hence the above delete...)
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Hi Surfangel and Kanga Roo!! Welcome to the group!!
Sorry I have been MIA, nothing to worry about just trying to complete an Owlette costume for my niece for her birthday on Sunday and the jolly thing has taken me hours longer to get done that I originally thought. The culprit was the cape/wings.
Each 'feather' had to be stabilized and edged but I must admit when it is put together with the t-shirt,skirt and mask it does look a treat so I think she will be happy with it.....at least I hope so.It is going to be a super busy week again this week, starting with the birthday party and a Dr's appointment so will be staying in town with DD2 over night then home for two nights before heading back to town for DD2's birthday, catchup with my two sisters on Thursday and then the get together starts on Friday so guess what? Yup, I'll be in Adelaide from Wednesday night through to Sunday afternoon when Aly and I will be heading back to Burra..........I sure am going to need a week of quiet conversation after that little lot......lol. Oh, I forgot to mention that I also have my younger sisters wedding to photograph on the Saturday. What's that old saying? oh yes, there is no rest for the wicked. Got to get me thinking that maybe I'm very wicked.....hahahaha!
Roo, hope you don't mind me calling you that, if you feel up to it feel free to join us for dinner on Friday night, we'd love to meet you. My phone number is 0409623237.....just give me a ring if you can make it and I can let you know where we are.
Hi Tennille......not sure if you have popped in before or not but if not, welcome.
A big hi to everyone else!! Love the little cluckers......love the nice fresh eggs they give too. I wouldn't mind having a few but there are way too many foxes around where I am and I don't have the strength nor the inclination to build a fox proof run so I'll just have to enjoy your girls.
Trish, how was the show? Did it live up to expectations?
Gotta go....again......I've got a heap of baking to be done for an afternoon tea my Railway committee are catering for tomorrow afternoon and sitting here on the ole puter is definitely not getting it done....lol.
Take care all!
Love n hugs. Chrissy
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Hi Chrissy, I love Burra! So picturesque and full of history, have spent some pleasant time at the caravan park there. Thanks for the invite, is it a group of our Aussie sisters at dinner? I wouldn't want to intrude, but would love to chat with others and hear their stories. My oncologist is Dr Vy Broadbridge who seems very good and up to date with the latest treatments.
I'm gaining enlightenment reading everyone's posts and links to articles etc. .. so much to learn. The thing that amazes me is how varied treatment strategies are.
Sending out warm fuzzies to everyone
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Chrissy ..Wow ...your niece's Owelete costume looks amazing !!!!
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