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
- Hi @Mellyb. I also have metastatic breast cancer. It is in my bones and liver. My oncologist told me that my cancer was "really bad".
What you have written about your mum is the most truthful thing that I have read since joining this forum.
I had taken myself off the forum for a while because I was not comfortable.
Thanks for being so honest.
In my experience, so many people have no idea what metastatic breast cancer is. I am constantly asked if I have finished my treatment.
As for the funding! Every thing seems to be about early diagnosis and prevention.
There is no cut off point to say that you are a "survivor". My cancer returned after 15 years. I am very fit, thin, breastfed, eat healthy food and exercise. There is nothing anyone can do to prevent a recurrence. It's a good question Mel. Culturally, many Australians have a reluctance to talk about death. I think that, coupled with our often misplaced faith in modern medicine, contributes to a preference to believe something can be done. That 'they' should be able to fix what ever is wrong. Acknowledging the failings in our systems is something many people do not want to do. The cynic in me who has been involved in a variety of fundraising and marketing exercises also sees why the dark side is often underplayed.
I work for Cancer Australia assessing research grant applications. The amount of money that is spent on trying to sort this mess out is astonishing. The thing that isn't discussed is the fact that the overwhelming majority of ideas fail. Completely. In theory, the failures add pieces to the jigsaw puzzle, clues on what paths through the maze go nowhere. Anything that looks promising requires years of work and millions of dollars to--possibly--come to fruition. If the general public knew how much of the funds raised through cakes stalls, the sale of flowers and thousands of km each year spent plodding around regional ovals went absolutely nowhere, there might not be so much enthusiasm for the collective effort to find the money. Good news sells.
You are right, the focus on MBC, and other terminal cancers, is very narrow. Don't get me started on the issues with lung cancer and other forms of the disease where pink muffins are just not appropriate marketing tools.
It takes guts and determined advocacy to change societies views. Hopefully you can make some sort of positive changes using your own experience. You can always get on here and have a good yell. Sorry if you felt like I was trying to divert your discussion--like many here there is little I can say except for make suggestions from my own experience which may help. Mxx
- That has exactly proven my point. No one wants to talk about the reality.. But why?
No one wants to talk about the fact that the billions of dollars raised for breast cancer research across the world over the last 30 years . Less than 5% of those funds have gone towards researching MBC. This is only just changing now.
No one wants to talk about the fact that this great new cdk4/6 inhibitor that is marketed at doubling progression free survival has NOT been proven to impact overall survival. There's a big difference between the two In January I sat in the Garvan institute discussing this with cancer scientists and specialists..
Instead we need to talk about these things in closed doors and 'censor' it because it's too confronting for society to acknowledge.
Don't you think it's time MBC is given more light?
PS I do have a psychologist. - Ah @Mellyb we have all had a rude intro into the realities of BC. The most frustrating thing is the lack of consistency--what works for one person has zero effect for someone else. It's very cruel and contributes to the constant anxiety that many of us suffer. That old saying 'everyone is different' gains a whole new perspective.
On thing that is pretty constant is the need to be able to let off some steam and have a good vent about the shittiness of it all. Like many others here I occasionally use a shrink or counselor. It's a good opportunity to test drive difficult conversations in a non judgemental space where you are not going to upset people you care about and have no need to censor your feelings. You just pay to dump it all on someone who might, just might, be able to give you some tips. If you haven't investigated this option, have a think about it. Not for everyone (because everyone is different) but it helps some. Marg xxx - Thanks to everyone for taking the time to reply and send their well wishes.
I was hoping I'd find some people in the same or similar position, to see what they may have decided. Then I realised that's pretty silly because, if you were you'd likely not be alive. Sadly.
Mum is deciding today, after talking with a few people and jotting down pros and cons. But as someone said on here, it is a decision she has to make herself. I wish I could scoop her up, take away all this pain and heart ache. I simply can't, and I simply can't get my head around that fact that I'm powerless. Like someone had mentioned the best and only thing I can do is nurse her until the end so she can be at home as she wishes. Watch my best friend slip away. I'm only in my early 30s. Guess this just isn't something I thought I'd have to cross now. I know I'm not the only one though.
What I think is we are a long way from a 'cure' on this condition, these wonderful stats of survival based on 5 years just don't reflect what's really happening and the volume of recurrence people are facing. It's a lifelong disease to manage that has no cure.
The garbage that is being sprouted that this condition is no longer seen as a death sentence but rather a chronic condition to manage is simply unfair and attempts to soften the reality of this disease. A chronic condition it is not. It's terminal. It's fatal. Let's just be honest about it.
These treatments are disgusting. They are debilitating, gross, and all they do is buy a bit of time as you travel towards death. Life becomes side effects, scans, blood tests, specialists. Hardly some lovely chronic condition to manage. It's nightmare and it's torture.
The lack of understanding and awareness of MBC is appalling. It's a group of women who have been well and truly forgotten. Or maybe it's too confronting for society to deal with. It's easier to live in a fantasy world of pink parades and muffins, where we all believe the war against breast cancer has been won... All these drugs developed that ultimately do nothing to impact overall survival (yet we are apparently meant to be excited about all these new drugs, what a joke) , and specialists that don't even know which ones to give you and in what order as it's trial and error.
No. This disease is far from cured and I feel for every person, and every family faced with this hopeless situation. It's a war that can't be won. - Hello @Mellyb I am so sorry to hear about your mum, its devastating news. Would you like one of our nurses to give you a call today? kind regards Giovanna
- Dear @Mellyb, I'm so sorry this has happened. Cancer is a horrible disease. My mum passed 3 years ago to cancer that had spread to liver and brain. I nursed her at home and granted her wish to for at home.she was only 66. I miss her everyday , she was my best friend. My thoughts are with you.
XO - Very sorry to hear this @mellyb It's so hard to contemplate losing your Mum - harder to see her sick and in pain. My thoughts are with you and your family.
So sorry to hear this @mellyb . It's very difficult time for both of you. Please tell her a big group of strangers are sending her their best wishes. Mxx
