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
- 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.
- @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 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.
- @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 xx - 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.
- @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. - @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.
- 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.
- @Mellyb
When my Ma in law passed no one knew where she wanted to be laid to rest. It's a tough subject. - @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.
