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
- @Mellyb my sincerest condolences to you and a thank you for understanding the crappiness of MBC , I'm only 51 and have been fighting this for 2 years I guess the main issue is to continue to raise the issue in the community and to anyone that listens.
I'm very honest when people ask me how I'm going and my response is usually very confronting as you said at the start , this is treated as chronic disease but it's not , it's a roulette game that we play with the drugs , treatments and emotions.
Be comforted with the memories, you stayed strong for your mum and that gave her strength to keep fighting as long as she did, keep moving forward and talk about it to anyone who will listen and keep talking to your Mum she's inside of you ....
lots of love .... - @Mellyb my sincerest love and condolences to you on the loss of your incredibly courageous Mum. I lost my Mum 11yrs ago to an unrelated cancer to her BC of 26yrs previously. I can honestly say I know how you feel, it is damn hard on so many levels. I didn't have time to spend with my Mum she was gone within 6 weeks of diagnosis, leaving us all in shock and pain.
What an amazing daughter you are! hold onto your beautiful memories, I too know that she absolutely isn't far away, and it's something you never get used to, you learn to walk through life and move forward somehow with it.
Sending the biggest hugs to you. M x - I am So sorry to hear of your loss @Mellyb - my condolences to you and your family xx
- Hi @Mellyb
So sorry for your loss and the agonising fight your dear mum went through. I lost my mum to BC in 2001. Words cannot express... - @Mellyb I too am so sorry to hear that your Mum has died. I hope that you and your family are managing your grief as wel as possible. I don't think you ever "get over" losing your mum - I still feel the emptiness often when I want to talk to my Mum about something and it's been 20 years since she died - but the terrible ache in your heart does get less. Take care.
- Hi @Mellyb so sorry to hear of your loss, and may your mum rest in peace. It is very difficult to lose our parents, I like to think that when we are thinking of our loved one that has passed that they are close by, and I imagine their arms around me to bring comfort to me. Take care and stay safe in this challenging time we find ourselves in at present. xx
- Hi everyone
I've just returned on here to find messages in my inbox and I have replied. But thought I'd updat this to let you all know that my mum passed away in June 2019.
She gave everything she had, tried everything she could. I'm proud of her. I held her hand. I miss her every day.
I hope everyone is going ok with their treatments. Best wishes - Hi everyone. I started a new thread, but thought I'd post here. An update, my mum is still with us after a whirlwind 9 months.. But it may have caught up with us. Would love some advice. Here is a cut and paste of what I just posted on a new thread.
For people taking Xeloda at some point, when did your doctor make the call that it was no longer working? And if it was deemed not to work, what did you get put on next?
On Xeloda for 9 months with amazing results after been sent home to die. Xeloda was a last ditch effort and remarkably it reversed liver mets and got the liver functioning in normal ranges again after been in liver failure with severe ascites. Now able to eat, move and function again.
Latest bloods show CA15-3 moved from 36 to 47. Normal oncologist is overseas. Locum said no point continuing. Xeloda has failed. Body probably can't take harsher drugs. So now it's time to accept fate.
Cannot accept fate. Feel too well. Always thought a scan is needed for concrete proof of how well a drug is doing. Locum didn't send for any scans.
Would love to know if similar experiences and if xeloda did fail what did you try next?
(have been on femara, ibrance, exemestene, abraxane, halaven, progression on all) - Hi @arpie,
thank you so very much for that link to Liz Riordan,all of the above information has really got into my head,@Mellyb, I would very much like to keep in contact with you in some way, just quickly my diagnosis, stage 4, mets to liver and spine, no early breast cancer diagnosis for me long story wont go into it here, you have enough on your plate, so go out into that sunshine and live in the moment,enjoy your being with your precious mother,just know that you and she are not far from my thoughts.
wendy55 - @Aggie are you serious? This sounds like some kind of drama soapie .. This isn't some kind of conspiracy .. I can't believe people are getting so worked up and passive-aggressive to others over this. How bizzare.
I just read this thread out here to everyone this morning including our doctor & nurse who just visited and are helping out and we are all having a bit of a laugh over it, but they seem very surprised this is such a thing..
I'm honestly glad we've been allocated a team of people to support that aren't judgemental but simply realistic, because this is really just quite sad.
On that note, I'm bowing out of this thread. Thanks to all those who contributed & offered support. I wish you all the best. We are off on to the beach to enjoy some sunshine whilst we can ☀
