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
- @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 tough - 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 care - 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! - 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.
- @Mellyb pink drill bits with 5c to BC....rude.
- Yes @LMK74....if you have a symptom they want you to go through GP
- @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 xox
- @kmakm I did dry July Xmas is looking good and I have a fatty liver, no alcohol will improve my health on three fronts hopefully.
@iserbrown I am feeling OK I have a very good supportive family I find the forum very informative and supportive.
Stork - @Mellyb, just my opinion, but there is no point in sugar coating things so others aren't afraid. If anyone finds the topic of death too much,well like you said scroll on past. Its a reality of life.
- @Mellyb To tag people you type their user name with the @ in front of it.
As you know I'm with you about changing the way BC is presented to the public. When you're ready, let me know.
@Kirsten_BCNA You might like to read this thread!
