Forum Discussion
Advice on ceasing treatment
Hi everyone
I hope someone can help me, this journey is horrible.
My mum was successfully treated for breast cancer 9 years ago. Last year it returned with aggression.
It attacked her intestine, peritoneal region ending in emergency surgery. She had 12 cycles of abraxane chemotherapy and was in remission. So placed on Femaras as maintenance.
Four months later, markers began rising rapidly. PET /CT showed new activity all through the peritoneal region.
We opted for the Ibrance + Examestene. At this time Ibrance was $5k per month but as it had such good resulted. We paid for it.
Ibrance had no impact on tumour markers, they continued rising and mum got sicker and very nauseated. Another PET/CT after 3 months treatment with Ibrance showed extensive liver mets. So many they couldn't count. And disease in the peritoneal region widespread.
She was immediately taken off ibrance and placed on Eribulin chemotherapy. Markers started dropping and liver function was improving. We were told things were stabling and we shared a sigh of relief. They said she could stay on eribulin as long as it work.
Then suddenly she wasn't tolerating it as well. Fatigued, dizzy, just laying on an armchair everyday with no energy and she lost 4kg rapidly. They repeated blood work but everything was fine. Then she started to feel a pulling ache in her right side so they did a CT scan and found her liver was massively enlarged, deformed and so bad that they couldn't even make out what was inside of it..
Upon seeing that image and seeing how unwell my mum was the oncologist advised he saw no reason to continue treatment. That her quality of life was poor and for the liver to be in such a bad state it's likely full of cancer and she will die soon. He couldn't say when she will die. Just soon.
So he sent us home and called palliative care.to set things up for mum to die at home.
This was 20 days ago. In the meantime, mum was happy to be off chemo.. Her energy returned, her apetitite returned. She began doing things around the house again, we went out, she gained 3kg.. And looks so much better.
We decided for a second opinion and saw a new oncologist . He re did blood work and her tumour markers have risen, and her liver function is now very much deranged.. And has deteriorated in virtually a month . Chemo toxicity cannot be fully blamed when she hasn't been on chemo for a month.
He advised she could try a tablet chemotherapy called xeloda which he said would be well tolerated and may buy time. Without treatment he said she would die in a matter of weeks as the liver function is heading toward failure.
I can't understand how all this is happening when she looks so good and has had the best 20 days in a very long time. But she is dying.
Mum doesn't know whether to enjoy what is left drug free, or whether to take the drugs which may buy time but how will it impact her quality of life?
This is a nightmare I don't want to let her go but I don't want her to suffer. Her metastatic journey has only been 15 months . Not even the average and even with trying brand new drugs.. I'm just shattered.
My dad wants to try CBD oil which we have legal through a doctor but it's apparently metabolised via the liver and can impact liver function. This oncologist doesn't want her to have it.
I'm heart broken.
I hope someone can help me, this journey is horrible.
My mum was successfully treated for breast cancer 9 years ago. Last year it returned with aggression.
It attacked her intestine, peritoneal region ending in emergency surgery. She had 12 cycles of abraxane chemotherapy and was in remission. So placed on Femaras as maintenance.
Four months later, markers began rising rapidly. PET /CT showed new activity all through the peritoneal region.
We opted for the Ibrance + Examestene. At this time Ibrance was $5k per month but as it had such good resulted. We paid for it.
Ibrance had no impact on tumour markers, they continued rising and mum got sicker and very nauseated. Another PET/CT after 3 months treatment with Ibrance showed extensive liver mets. So many they couldn't count. And disease in the peritoneal region widespread.
She was immediately taken off ibrance and placed on Eribulin chemotherapy. Markers started dropping and liver function was improving. We were told things were stabling and we shared a sigh of relief. They said she could stay on eribulin as long as it work.
Then suddenly she wasn't tolerating it as well. Fatigued, dizzy, just laying on an armchair everyday with no energy and she lost 4kg rapidly. They repeated blood work but everything was fine. Then she started to feel a pulling ache in her right side so they did a CT scan and found her liver was massively enlarged, deformed and so bad that they couldn't even make out what was inside of it..
Upon seeing that image and seeing how unwell my mum was the oncologist advised he saw no reason to continue treatment. That her quality of life was poor and for the liver to be in such a bad state it's likely full of cancer and she will die soon. He couldn't say when she will die. Just soon.
So he sent us home and called palliative care.to set things up for mum to die at home.
This was 20 days ago. In the meantime, mum was happy to be off chemo.. Her energy returned, her apetitite returned. She began doing things around the house again, we went out, she gained 3kg.. And looks so much better.
We decided for a second opinion and saw a new oncologist . He re did blood work and her tumour markers have risen, and her liver function is now very much deranged.. And has deteriorated in virtually a month . Chemo toxicity cannot be fully blamed when she hasn't been on chemo for a month.
He advised she could try a tablet chemotherapy called xeloda which he said would be well tolerated and may buy time. Without treatment he said she would die in a matter of weeks as the liver function is heading toward failure.
I can't understand how all this is happening when she looks so good and has had the best 20 days in a very long time. But she is dying.
Mum doesn't know whether to enjoy what is left drug free, or whether to take the drugs which may buy time but how will it impact her quality of life?
This is a nightmare I don't want to let her go but I don't want her to suffer. Her metastatic journey has only been 15 months . Not even the average and even with trying brand new drugs.. I'm just shattered.
My dad wants to try CBD oil which we have legal through a doctor but it's apparently metabolised via the liver and can impact liver function. This oncologist doesn't want her to have it.
I'm heart broken.
82 Replies
- Glad you're finding it a good read @arpie. K xox
- 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.)
http://liz.oriordan.co.uk/CancerBlog/diagnosis/?post=what-learning-curve
Interestingly - I've found a few bits that have been duplicated on the same page in different sections ..... so memory affected then & there! - @Mellyb Not MBC but an interesting read, Liz O'Riordan's blog. She's an English breast surgeon who got BC. Unfortunately she's just had a recurrence. An different perspective.
- @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. - @AllyJay Exactly. I dislike that generic, averaged five year statistic. It doesn't reflect the reality of a breast cancer diagnosis.
- @allyjay Once again you come up with a great analogy that pins it down, cut open and on display.
- 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.
- 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.
