Why not join the Living with metastatic private group? Access group via the link here.
Advice on ceasing treatment
Comments
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@Stork Good on you. I've cut down massively. Gone from 2 - 3 big glasses a day (over the two years of peak stress prior to my diagnosis. Before that it was less) to one or two normal size glasses once or twice a week, and sometimes less. I feel so much better for it. K xox0
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I have nothing much to add to this thread except to echo @Zoffiel's comment that Australians are culturally ill prepared to talk about death. And many of us don't because we don't want to upset distressed and angry people any further. But none of us is getting out of here alive. However and whenever we go, we will go. We train people for all sorts of useful things, but not so much for relationships, parenthood or death. Which all matter so much. Getting to grips with the reality of death, as an integral part of life, is one of the best things I have got out of bc. But timing is all. And suffering is something else again.5
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https://m.facebook.com/Australasian-Cemeteries-Crematoria-Association-1551628938474441/
Dying to know day 8 August 2018
Events held across the nation
It doesn't hurt to learn a little about it!
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Just to say this is an industry I have been involved in for 13 years.
Not everyone's cup of tea. But it is inevitable and it doesn't hurt to research so that your family are aware of your wishes
Take care0 -
@Afraser this is true. Absolutely we are not prepared for it and these are life skills we really need. Perhaps in the classroom more could be done. I'm not sure.
I think there's a fine line to be balanced as well. Talking about death too much, when you're battling a disease like this, can also erode the 'hope' and therefore negatively impact people on the journey. I tried to keep things very positive on the journey. People can get absorbed by the notion of death and easily slip into depression which isn't healthy either.
Life sure is tough0 -
@iserbrown good points raised. I didn't know such organisation existed or events. A great initiative. I know it's been a massive learning curve for me tending to all sorts of things and putting affairs into place, ensuring everything is covered.
Who knew that dying was such hard work.1 -
It's a tough subject and one that is in the back (or front) of my mind constantly since diagnosis. My sister was diagnosed at 32 - very early breast cancer. The lump she found was actually a cyst and there was a very small cancer behind it. Lumpectomies were only just becoming a thing at that stage. Her surgeon did a mastectomy because he wanted to be sure that there would be no recurrence. She passed her 5 year all clear. It came back with a vengeance a few years later. She died at 45 - way too bloody young. I know treatments have improved since then but it haunts me on so many levels.0
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@Aggie, I am on the "con" as you state that are cdk4/6 inhibitors, well my tumours have shrunk, some have even gone altogether, and I feel great most days, yes I do have monthly visits for bloods etc, but I went to my GP every month anyway for my medication for blood pressure etc , so there is not much change there, I know I can't be cured, but I have a good quality of life and if it only extends my life by a couple of yrs, well that's 2 more yrs with my family, I will take that. I have already passed my use by date, so it's all a bonus from here on in.6
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@Kattykit that's great to hear that it is working well for you with no side effects. Exactly what we want when trying these new medications!
I think the comment about the "con" from @Aggie is that this new drug has been heavily marketed as a breakthrough and is yielding a high cost but it has failed to prove any statistically clinical benefit in overall survival for patients that take it. In other words the survival hasn't changed at all. People are still living the same amount of time whether they do or don't take it.
I'm fairly certain the latest PALOMA3 study again showed no improvement in survival.
The improvement is in progression free survival only. So that doubling of 2 years isn't actually extra time in terms of life, it's time to progression.
Hope that makes sense.1 -
I know what it means, but my doc said to me that I would not have got this far without it, so for me it has extended my life and my quality as well, my leg was just about to snap, potentially putting me in a wheelchair as it is I have a nail from the top of my thigh to my knee, the Ribociclib has given me hope and freedom. I am sorry to hear about your mum, I have lost my dad and my sister to cancer, my sister lived 6 weeks from diagnosis and my poor Dad was younger than I am now when he passed, so I understand your pain and frustration. I hope your mum is as comfortable as she can be.1
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@Kattykit oh my gosh, a nail! I'm really glad that this drug has helped you and I hope you get a long time out of it.
Regardless of the studies and stat's the truth is when you have a disease like this you will try anything and that's completely fine to do. Any benefit is better than none. Our view with mum when she tried it, was that even if it doesn't improve overall survival, it would delay more toxic therapies such as chemotherapies, and so that was sufficient to convince us to pay the $5k per month for it. Sadly it wasn't meant to be for us.
But I do think there's a lot of confusion out there between progression free and overall survival, when the same results may be achieved with other meds etc (in some cases).
It's a very individual disease unfortunately so one set of treatments don't yield the same results for everyone.
I'm not so much frustrated anymore, more residing to this fact of life. But I still believe there's much work to be done for MBC patients such as yourself and I hope a light can be shone about it xx1 -
I don't try crazy diets or anything else I do the same as I have always done, my doc recommended this for me, after she fixed my leg , she said it would stop the tumour eating right through my femur, and it has, also got rid of a few, I am so sorry it didn't work for your mum, but we all need to be able to have hope and some of the newly diagnosed have been terribly upset to the point of thinking that any treatment is pointless, I know that wasn't your intention but some people take a long time to come to terms and some need constant reassurance. Nothing is perfect, and the public dollar will only stretch so far, I get that they spend more money trying to stop this before it gets to people like me and maybe they could spend more money on mbc, but that can also be said about a lot of cancers, like pancreatic, my close friend died from that as well. I am sure they take what they think is the best course and spend their dollars where they think it will do the most good and that for every new treatment there are hundreds that went nowhere. Cancer has always been with us, it's not a new disease and we can all sit back and say this causes it or they should do it this way, but who is to say what is the right way.3
