Advice on ceasing treatment
@Kattykit I'm not going to apologise for starting this thread because regardless of how upsetting it may be this is a fact of the disease and I believe the heading I chose reflecting the point I was at ie "ceasing treatment" . Clearly this is a thread about end stage and impending death. People can scroll past and not even click on the thread.
I cannot comment on your individual circumstance and whether that treatment was the only one that would have halted progression. Maybe other drugs would have achieved the same result anyway. Who knows. That's for your oncologist and team to determine the best treatment path.
The comments I made about the studies on those drugs are fact, simple as that. Obviously there's always anomalies.
But none of the comments made by myself or the other ladies in this thread have been baseless. They are based on fact. They are based on studies and they are based on where money goes.
Just as you feel my comments may be harsh to people having treatment, perhaps I and others may feel the converse is also true. We are entitled to opinion. I believe your view would be different had the inhibitors not worked or if they suddenly stop working. For many this is their reality.
The thread has been about lifting the veil on some of these misconceptions. I don't see why that is such a big scary thing to people.
It is not like I'm trolling the threads of other people having treatment and telling them all it's a waste of time and you're going to die anyway. I haven't commented anywhere else other than this one thread I've made. You have decided to come here and make comments about how your treatment is working. Perhaps you are in the wrong thread and likewise anyone else that finds this confronting. I'm not here to start a war with people and their treatment regimes.
I am not after war either, I just mentioned that my friend got very frightened , which is true, I am not disputing facts I have also read just about everything about this. So I will bow out now, once again I am sorry your mum is not well, I have lost family to cancer as mine will lose me, so I do know how you are feeling. Take care.1
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I don't know if I count as the newly diagnosed still (5 December 2017 and still in active treatment) and don't want to make this thread about dissension but I can understand both points. I do believe that the title of this makes it obvious what it's about and gives the opportunity for those who don't want to read it, to avoid the issue. That said, of course it's confronting. And terrifying. On the other hand, it is what it is and no amount of "ostrich behaviour" is going to make it go away. I try to be optimistic but I know the reality is that I do not know if this bastard of a thing is going to come back. I think it was @zoffiel who said that Australians don't deal with death. I'm in the seemingly unusual position amongst my friends, in that I have had death up close and personal throughout my life, starting from when I was a child. I know that it happens. And I know the impact it has on those who are left behind. Having lived it, I am so scared of leaving my kids too early. Although, I lost my Mum when I was 35 and that's still too bloody early.
But to get back to the point, I have read the posts on this discussion. Some I cannot seem to focus on as my eyes just seem to keep sliding over the words, but I know I will go back to this when I get my head into a better space. When you try to find out information about progression and real life expectancy, the presentation of it is often meaningless or so impersonal as to be brutal. The 5 year thing is important in the first instance, I guess, but after that, what does it really mean? Yes, I want 5 years but what about 10, 20, 30? It's as valuable to have discussions like this about the reality for those who face the issues surrounding end of life, quality of life, and decisions to cease treatment as it is to have the other discussions and I don't think they should be hidden away in private groups only. The whole point of this network is about connection and validation. I have a recollection from earlier in the year that one of the women who was involved in the start of this network, herself died from the disease. Sensitivity in titling any such discussions (as show with this one) is to be hoped for but I think they need to be as public as the others.
@Mellyb I hope your Mum was able to come to a decision that she can cope with and my thoughts are with you and her, and the rest of your family.
Great thread....honest and confronting. As folks have said, they sugar coat the arsenic pill, but the reality is, as soon as the pinky pink sugar coated crust is licked off, the same, deadly poison remains. What has irked me most (next month is two years since diagnosis of grade 3 stage 3...so a bee's dick away from the dreaded stage four), I feel all the professionals brush me off, or toss out platitudes such as "Well nobody lives forever) when I have asked for an open and honest opinion of me beating this fuckfest.They rabbit on about "Well there's a blah blah percent of people with your type and stage who are cured. When presses, do they mean cured cured, or five years cured, they admit five years is the benchmark. When I get all huffy and state that five years is not a cure, merely that the can was kicked down the road for another five years, but then will come back into play, they shrug and brush me off. Well F**k a duck!!!. If you're on death row, waiting for the big zap, or getting your neck stretched or whatever, and your lawyer waltzers in and announces "Good news...your death sentence has been revoked...you're still staying in jail, but you'll live doing it.' Well great...not so great if in five or six years, the big wigs arrive with their bunch of keys, let you out of your cell, and march you off to the death chamber to do the dirty. If you protest and wail "But I was told that my death sentence had been revoked!!!" Well toots, that only applied for five years, now it comes back into effect. That prisoner would have every right to feel he or she had been shafted. If the best I can expect is five years, or ten or whatever, the fucking well say so, don't offer me a wilted bunch of petrol station flowers and tell be I will win the jackpot and be cured. Five years is not a cure, it's just a delay in the execution. End or rant.
@Aggie thank you! My psychologist has said I'm taking things quite balanced.. Hopefully I can keep myself together.. Well I don't really have a choice when everyone is relying on you!
@AllyJay great way of putting it! Had a bit of a chuckle at your descriptions actually
@Sister glad you could see all viewpoints and the need to not have to keep everything silent either.
For me personally, I've been concerned about MBC long before my mum was diagnosed and these views I hold are not a gut reaction due to my current situation.
I've long followed MBC specific groups such as Metavivor, Metup and I adore Anne Silberman.. Follow her on Facebook with over 10k followers 'Breast Cancer? BUT doctor I hate Pink'. She has been dealing with mets for 8 years and on chemotherapy that entire time. She is real, raw and doesn't cover up the journey she has been on and above all recognises that she is an anomaly to survive so long whilst many of her pals haven't. She advocates for awareness, for more funding, more support. I love this woman. There's plenty out there across the world doing their best to change the landscape and I admire each and every one of them.
Here is Australia I personally think things are changing.. Slowly. I spoke to a few people from the McGrath Foundation. They have realised and acknowledged that MBC patients need a different kind of support. For the first time ever there are now 6 nurses dedicated to MBC who will be there right through to the end. Now that's something great in my view.
I'd love to get in touch with other women or men who see things similar. @Aggie you mention many other silent contributors who have been silenced in the past, I'm curious of this?
I have to say I've called BCNA before last year and they were very supportive with many of the things I was saying, as confronting and candid as the discussion was. I appreciated that.
One thing is for sure, I've learnt a lot from my mum. That you can have hope at the same time as being a realist. The glass is neither half full or half empty. It's just a glass with water in it.2
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A valuable thread, @Mellyb - this is the most horrible thing for you all to be going thru - and our hearts bleed for you and your Mum. I hope she is as pain free and comfortable as possible & doing what she loves doing. Take care xx
None of us really like to think about dying - but it has to be faced sooner or later.
WOW @kmakm - Liz O'Riordan's blog on BC is a wonderful write-up (I am only up to Information Overload so far .... - the link is below - just click on 'next post' at the bottom to keep going forward in date order of her blog.)
Interestingly - I've found a few bits that have been duplicated on the same page in different sections ..... so memory affected then & there!
@Aggie are you serious? This sounds like some kind of drama soapie .. This isn't some kind of conspiracy .. I can't believe people are getting so worked up and passive-aggressive to others over this. How bizzare.
I just read this thread out here to everyone this morning including our doctor & nurse who just visited and are helping out and we are all having a bit of a laugh over it, but they seem very surprised this is such a thing..
I'm honestly glad we've been allocated a team of people to support that aren't judgemental but simply realistic, because this is really just quite sad.
On that note, I'm bowing out of this thread. Thanks to all those who contributed & offered support. I wish you all the best. We are off on to the beach to enjoy some sunshine whilst we can ☀1
thank you so very much for that link to Liz Riordan,all of the above information has really got into my head,@Mellyb, I would very much like to keep in contact with you in some way, just quickly my diagnosis, stage 4, mets to liver and spine, no early breast cancer diagnosis for me long story wont go into it here, you have enough on your plate, so go out into that sunshine and live in the moment,enjoy your being with your precious mother,just know that you and she are not far from my thoughts.
Hi everyone. I started a new thread, but thought I'd post here. An update, my mum is still with us after a whirlwind 9 months.. But it may have caught up with us. Would love some advice. Here is a cut and paste of what I just posted on a new thread.
For people taking Xeloda at some point, when did your doctor make the call that it was no longer working? And if it was deemed not to work, what did you get put on next?
On Xeloda for 9 months with amazing results after been sent home to die. Xeloda was a last ditch effort and remarkably it reversed liver mets and got the liver functioning in normal ranges again after been in liver failure with severe ascites. Now able to eat, move and function again.
Latest bloods show CA15-3 moved from 36 to 47. Normal oncologist is overseas. Locum said no point continuing. Xeloda has failed. Body probably can't take harsher drugs. So now it's time to accept fate.
Cannot accept fate. Feel too well. Always thought a scan is needed for concrete proof of how well a drug is doing. Locum didn't send for any scans.
Would love to know if similar experiences and if xeloda did fail what did you try next?
(have been on femara, ibrance, exemestene, abraxane, halaven, progression on all)
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