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Comments

  • Delvzy
    Delvzy Member Posts: 454
    edited November 2017

    ribociclib is the one!!

  • Delvzy
    Delvzy Member Posts: 454
    edited November 2017

    wild places it's ribociclib . I can't find who was on it or for what reasin

  • wildplaces
    wildplaces Member Posts: 544
    edited November 2017

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC42589...

    Palbociclib and ribociclib are CDK4/6 inhibitors - targeted therapy - now pretty much first line with hormonal therapy in Metastatic hormone positive disease in the US, Canada and some of Europe. You are right there is a thought they are very useful in bone disease. They can only be accessed by trials in Australia but I think one of them will soon be PBS - maybe before end of year.

    I see you are in Bendigo - is your oncologist local? If you are looking into this can they refer you a clinical trial - Peter Mac Melb or maybe the Austin - Olivia Newton JOHN Cancer centre...

    This is the latest - but I think it will be sooner then later truly...everyone is talking about it on the Coast - I know absolutely not soon enough!

    https://www.bcna.org.au/about-us/advocacy/submissi...

    😊🌷

  • Delvzy
    Delvzy Member Posts: 454
    edited November 2017

    it sounds like a drug that definetly needs to be on the subsidy list thanks for the inf

  • Mereda
    Mereda Member Posts: 2
    edited February 2018

    Hi All,

    Relative has progression in liver following hormone therapy Femara and Eribulin, Abraxane, Xeloda, Navelbine. Are there more treatments still available on the PBS in Australia?

  • chrissyb
    chrissyb Member Posts: 11,438
    edited November 2017

    Hi Mereda, welcome.   Sorry to hear that your relative has reached the point that this suggestion has been made. If her oncologist is suggesting she let nature take it's course, it's sometimes not because there are no more drugs available but that her body can no longer tolerate them so she really has no quality of life.  She always has the option to go to another oncologist for a second opinion,

    Unfortunately I can't get a PBS list so cannot tell you what other drugs there are but if she is in Victoria there is always the Olivier Newton-John Centre in Melbourne or in New South Wales there is Cancer House in Sydney where she may be able to access more information and or the possibility of participating in a trial.

    I wish her well in her endeavours if that is what she chooses and I hope this has helped, even a little.

    Love n hugs.  Chrissy

  • Mereda
    Mereda Member Posts: 2
    edited February 2018

    Thanks Chrissy....you're right - the onc possibly thinks that the treatment is worse than the cure but also the fact that none of the last couple of treatments have worked at all could be playing a part in the onc's thinking.

    I probably didn't word my question that well by including reference to the PBS - I was really just asking if anyone knows if there are any other treatments out there. I know that just taking a tablet or having any treatment means a lot to her and keeps her going and in a positive frame of mind as there is just that glimmer of hope.

    She is in Brisbane. I'd like her to consider a 2nd opinion but how does she go about that? Does she go back to her GP and ask for a referral or does she ask her onc to recommend someone? I doubt if her onc would readily agree to do that or am I wrong ie is this something that is done frequently? I imagine that the oncologist community is quite small and they would all know each other and I can't see them passing patients to each other, particularly ones that aren't responding to treatments.

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited November 2017

    Hi Mereda

    I'm sorry about your relative, it's so hard when you are trying to make sure someone you love is getting everything they need.

    It does seem that the onc thinks the treatment isn't worth the pain and suffering, and sometimes that's the case, but surely the patient gets to choose in that case. I'd make sure that she has all the options explained and what the side effects are likely to be and then make her own informed decision. The onc shouldn't be making that choice for someone else. It may also be the case, that there simply aren't any effective treatments left, but that also needs to be explained properly.

    Getting a second opinion means going back to the GP and getting a referral to another onc. Don't ask the current onc for a recommendation. You can google oncs in Brisbane, but the information won't tell you if they are good or not. If the GP is good - they will know another onc that she could go to.

    If you relative wants to try other treatments, then that is her right - only she can make that decision.

    Please let us know how you go.

    Trish

    xoxo


  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited December 2017

    Hello everyone

    It's been a bit quiet on here, and I hope that means everyone is getting on with life and not worrying about bc!

    I've had some added bumps in the road, and been a little unwell just lately. It turns out I have some damage to the right hand side of my heart - most probably caused by all the chemo I've had. It was sort of expected, but I've been told, at least it's the right hand side, which isn't as serious as the left. More troubling is that my liver is very enlarged and my liver function tests aren't great. I've had scans, and there's no lesions or anything to make us think it's mets (thank goodness!), but we've noticed my triglyceride levels have been climbing for a while, and all the years on an AI haven't helped that.

    I've gone off Femara, and along with a very low fat diet, hopefully my liver will start to behave again. I've been on an AI for over six years now, so I feel it's enough for me. Along with the liver problems, if I stayed on it I think I wouldn't be able to walk in a few more years. One other positive thing is that since I've stopped it, my brain has come back! Lol - I didn't realise how foggy I had become until I'd stopped it.

    So - while these are a few bumps in the road, and I'm not feeling great at the moment, I know things will improve ... eventually.

    I'm still loving my job, and that's been great in taking my mind off things.

    I hope you are all well, and enjoying life.

    Hugs to you all

    Trish

    xoxo 

  • chrissyb
    chrissyb Member Posts: 11,438
    edited December 2017

    Hey Trish, not good news on the heart but as you say, it was expected but still not good. Has any treatment been suggested or is it a watch thing. Bugger about the liver but I hear you on what the AI's do to you that's why I stopped this time last year. Seven years was enough for me as well it sure does mess with the triglycerides and damn near cripple you. Having that brain curtain lift is really the bonus here......lol.

    Here's hoping the low fat diet and not being on the AI is enough to start the ball rolling so your liver can heal.

    I'm doing fine and after all my tests my heart is fine, no damage or placque but for some reason goes into dyastolic disfunction when under stress and there's nothing that can be done about that. My weight has ballooned although I'm nit sure why, food and quantities are the same as always but I've managed to stack on abiut 5kg........not good!!! Come the New Year my intention, and you can all hold me to this, is to loose both the 5kg I've put on plus a bit more as being this weight is just not comfortable!!

    Still light headed and walking around like I've been partying for hours and have not found the reason but I'm beginning to think that maybe it's becayse of nerve impingement in my neck as I'm getting wgat I call dead hands......they goe to sleep easily, are very weak in the grip and pain in the fingers which is different to arthritic pain. I have an appointment with a neurologist in the New Year to gave some nerve conduction tests done to check out that line of thinking and rule out carpel tunnel. And on it goes! !! Have I told you lately that cancer abd all its related s8de effects through treatment along with getting older just SUCKS!! Yes girls, I'm officially over it.......lol.

    On a more pleasant note, I wish you all a wonderful Christmas and a much healthier New Year!!

    Love n hugs. Chrissy xx

  • Lucy55
    Lucy55 Member Posts: 2,703
    edited December 2017

    Chrissy ..so glad to hear that your heart is good !!!..but sorry about your other issues ..it all sucks ...I'm always planning to start a diet ...err.. tomorrow...HaHa .. tomorrow never comes !

    Trish ..sorry about the trouble you are having with your liver .I hope that it's improving now without the Femara ..I know about the brain fog with the tamoxifen I'm on 😵

    I'm busy now in the lead up to Christmas..we will have 25 of us ..even though everyone is bringing food the host still has a million more things to organise ..not to mention the clean up before everyone comes , and again after they leave !!

    Hugs

  • aussie12
    aussie12 Member Posts: 421
    edited December 2017

    Merry Christmas everyone, hope that you all have a great day.image

  • Lucy55
    Lucy55 Member Posts: 2,703
    edited December 2017

    Just a quick fly by to wish you all a happy safe Christmas with family and friends ..looks like we're in for a HOT one here in Brisbane !!!!

  • wildplaces
    wildplaces Member Posts: 544
    edited December 2017

    PALBOCICLIB and RIBOCICLIB

    The PBS drug info is accessed under pbs.gov.au

    Drugs available are listed A-Z

    It takes a bit of fiddling to find info but it's not to bad.

    This is under news and you have to click on the Recommendations of PBAC for the time period. They met end Nov.

    http://www.pbs.gov.au/info/news/2017/12/recommenda...

    On page 4 and 7 the PBAC has decided once more not to recommend PBS for palbocilcib and riboclicib despite that the USA have Palbociclib since 2015and have now added ribociclib March 2017 and Abemaciclib to their arsenal.

    They will be meeting again in March 2018 and there will be resubmissions.

    TGA approval is available for Palbociclib and Ribociclib meaning those who can and are willing to mortgage their homes can have the drug for approx $5000 a month.

    Pfizer does not offer a compassionate access scheme at this stage but Novartis does for Ribociclib, provided you access it within 29 days of diagnosis. They can both be acccessed through trials should live near one or be willing and able to travel.

    The quoted reasons were cost and no strong evidence for improved OS - which is bullshit.

    The fact that they allow women to continue a functional life and not dive straight off into iv chemo seems to fall on death ears.

    (I find it particulalery frustrating as stents ( $10,000 a stent - and sometimes 4 are placed ) pacemaker and debrillators ( higher cost ) are placed with wild abandon in elderly patients with congestive cardiac failure whose statistical prognosis does not stretch beyond two to three years. I am not suggesting those treatments should not be available - I am suggesting we have a strange system of allocating the health care dollar and IMO women as a group fall aside)

    Keep informed, keep watching PBS and BCNA who had a 32,000 signed petition on this and keep lobbying as much as you can!!


    Wishing everyone a Happy Christmas - may we join the rest of the world 🌎 early 2018! ⛄️🎄🍾


  • Aussie275
    Aussie275 Member Posts: 18
    edited December 2017

    Hi everyone 😊

    I am sorry I haven’t been on here lately just so much going on with the kids finishing school, I started doing some small scale renovations- crazy I know and just general BC treatment & life.

    Treatment is going to plan as far as we know I am now up to my fourth round of my 12 Taxol today. The AC went well & taxol as far so good but I do worry about neuropathy, I haven’t had any signs yet though.

    I hope you all had a lovely Christmas & wish you well for 2018 xxx


  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited January 2018

    Happy New Year everyone!

    I hope that 2018 treats us all well.

    Aussie275, it's lovely to hear from you, and I'm so glad that AC was ok for you. Taxol isn't as harsh, however if you start getting signs of neuropathy let your onc know straight away. When I was doing Taxol, I would suck on an ice-block while the Taxol was being infused, and it really helped with the yukky taste change.

    Wildplaces - thanks for the info on Palbociclib and Ribociclib. It seems crazy that drugs that help aren't covered by the PBS. It's not that unusual though - Herceptin was available for around five years before going onto the PBS. And from what I heard, only because one of the politicians at the time had a close female relative that was triple + and had to go on Herceptin. I got it about 18 months after it was approved for PBS. Otherwise it would have cost me around $80k.

    I'm feeling much better now. My liver isn't upsetting me as much and I've been losing weight too. I've been upping my exercise to get my heart working again and try to get some fitness back. It all seems to be helping.

    Love to you all

    Trish

    xoxo

  • Lucy55
    Lucy55 Member Posts: 2,703
    edited January 2018

    Wishing you all a Happy New Year ...hopefully it's a good one for us all !!

  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2018

    Hi all!  Happy New Year to each and every one of you and your families.

    I had a lovely Christmas with my family and learned that I have now two ready make great granddaughters.  We were finally introduced to my second grandson's love and her two little lovelies, Mikaela and Lily aged 4 and 2 and then to top it off, on Christmas day they announced they were 14 weeks pregnant.  I'm so chuffed I really don't quite know what to do with myself......lol.  Last year ended and this year is beginning with all good things.

    Well for those of you who are not on FB and are new to the thread, we have a get together somewhere in Aus each year.........last year it was at the end of March and held in Canberra.  It's time to start the process of organizing this years event in order to give those who need to travel distance time to work out their mode of travel and be able to get the best deal possible if they are flying.

    Also, suggestions of where to hold it as well as when........it was talked briefly last time that it be held in Adelaide this year but if that is the case I will need to have some idea (not necessarily definite) numbers so I can plan accommodation.  For the newbies, we usually get serviced appartments and share as it keeps the cost down.

    Please don't hang back if you feel a little shy as we are a friendly bunch and welcome everyone.........we would love to see you and I guess you us....it's nice to be able to put faces to names.  We are all shapes and sizes and some with more hair than others it doesn't matter as we all have been there and done that.  The weekend (usually Friday afternoon to Sunday afternoon) is not strenuous as we tend to just sit, chat, laugh, have a glass of wine for those who do, eat and generally just relax and play it by ear when it comes to exercise.

     Ok, this is becoming a book....lol.  Looking forward to hearing some feedback.

     Love n hugs.  Chrissy

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited January 2018

    Hi Chrissy - congratulations great grandma! lol I feel your joy xoxo

    Adelaide sounds good to me - I do remember from last year that we thought we might change the timing slightly so that Ally wasn't away from home for her birthday? I'm definitely trying to get there, just depends on how the money stacks up :-)
    Trish

    xoxo

  • Lucy55
    Lucy55 Member Posts: 2,703
    edited January 2018

    Chrissy ..Wow ..what a lovely Christmas suprise for you !!!

    I am interested in the get-to-gether as well ..I'd love to meet you all !!

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited January 2018

    Oh ... one other thing to consider. Easter is the last weekend in March, and a quick look at airfare prices indicate that it would be cheaper to fly after Easter, rather than before it. That will put it into April, but will that cause concern?

    Trish

    xoxo

  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2018

    Yes Trish, thanks for the reminder about Easter and Aly's being home for her birthday.  April is good for me as I already have quite a bit on the calendar for March and it will be cooler Autumn weather then as well where ever we decide to have it.

  • Aussie275
    Aussie275 Member Posts: 18
    edited January 2018

    Hi

    The get together sounds lovely 😊 what a nice idea. I won’t be able to attend this year as I will be probably surgery bound - not fun but a necessity.

    Congrats on becoming a great grandmother Chrissy wow that is awesome & will be so much I bet.

    I am half way through taxol this Friday & can feel big changes in my tumour as I am having neo adjuvant chemo. I am excited by this but still so worried the chemo is moving the cells around my body 😩 I know there is no way of knowing but it all is such a game of ‘not knowing’.

    Trish glad your liver is treating you better & exercise is great I really need to start moving more.

    HAPPY NEW YEAR EVERYONE

  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2018

    Aussie275 I wouldn't worry about the cancer moving through your body as the idea of neoadjuvent chemo is to stop that from happening while reducing the size of the tumor so it can be totally removed at surgery. I know right now it's hard to get your head around the not knowing but trust that the chemo is doing its thing and killing (not spreading) those pesky little cancer cells.

    As for the get together, you can always look forward to next year as I'm sure it will be happening somewhere in Aus. 😊

    I'm so excited about my new great grands and getting to know them better.

    Loce n hugs all. Chrissy

  • Aussie275
    Aussie275 Member Posts: 18
    edited January 2018

    Thanks Chrissy xxx I have had a tough week and needed that, you are right & it is working - onwards & upwards

  • aussie12
    aussie12 Member Posts: 421
    edited January 2018

    Hi all

    The last few weeks I've been having pain in my left side abdomen where my bowel cancer was. It hasn't been that bad that I need to go to the hospital. I had my CT scan yesterday for my 3 monthly check up, I tried to see the Oncologist yesterday but couldn't, I did tell the Nurse and CT lady about the pain. The Nurse said that the Doctors would check the CT yesterday an if anything was there they would let me know.

    They did ring me today just to say that my appointment to see the Oncologist was changed from Thursday 18 until Monday 22. I asked about my CT but it was an office lady who didn't seem to interested. I'm very annoyed and quite worried about the pain.

    It could be kidney stones which I have had before as I was feeling nauseas yesterday.

    My GP normally gets all my results etc so I might go on Monday and see him as something is going on which needs to be sorted out.

    Chrissy great news for you.

    Have a good weekend all

    Carol

  • moderators
    moderators Posts: 8,744
    edited January 2018

    Sending you hugs Carol. The waiting/not knowing is really the worst!

    Chrissy, congratulations from us as well.

    We're excited to hear about your get-together, and eventually seeing photos!!

    Happy New Year Everyone! Medicating


  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2018

    Hi Carol, if your GP gets a copy of results a visit there will definitely put you mind at ease even though I doubt there is much to worry about as your appt would have been bought forward rather than be pushed back. You will also get a chance to discuss possibilities of the cause of your pain with your GP and if necessary be referred on.

    Keeping fingers and everything else crossed that it's all good for you.

    Thanks Mods and a Happy New Year to you as well. Hopefully we will stop talking long enought to snap some pics to share with you.......lol.😁

    Aussie275 hopefully these last few days hsve been better for you.

    Love n hugs all. Chrissy


  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited January 2018

    Carol - I'm thinking of you - have you been to your GP yet?

    Thanks Mods - we are looking forward to our get together too - they are always a fabulous time :-)

    Aussie275 how are you?

    Trish

    xoxo

  • aussie12
    aussie12 Member Posts: 421
    edited January 2018

    Hi all. I went to the doctor's yesterday and he sent me to Midland hospital emergency. My CT scan was clear of cancer and I was in pain and quite nauseous. I got discharged last night with no answers so then went back to the doctor's today and had an x-ray. I'm Going back to the doctor's this afternoon. They think that it might be some sort of obstruction in the bowel. Not only did I go to hospital yesterday but my hot water system stopped working and luckily a plumber came yesterday and replaced it. So that was a big expensive. I will let you know what is going on after i see the doctor this afternoon. Carol.

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