Why not join the Living with metastatic private group? Access group via the link here.
Advice on ceasing treatment
Mellyb
Member Posts: 36 ✭
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.
0
Comments
-
Oh @ Mellyb I can totally understand that you are shattered .
I don't have any answers for you at this dreadful time .My experience was similar with my mum only it wasn't Bc , started off as bowel cancer & went to her liver .
She had a period of time when they told her things were on the improve & we all got our hopes up but it was not to be .
I have only recently found out that she declined treatment offered to her towards the end . I may have been told at the time but was obviously to distressed to comprehend or remember .
Sadly she was only 65 at the time , an age that is slowly creeping up on me , my mind will not let that go !
I hope your mum can make her decision & enjoy some lovely times with her family .
Thinking of you & sending you strength , love & hugs
Beth xxx3 -
Oh mellyb how horrible for you all . You could call the helpline at BCNA they are help you all access information. and supports
@Giovanna BCNA
1 -
Thanks Beth. Getting the hopes up is such a cruel thing when it comes to MBC because this disease, well in this case, is unrelenting and progressive. It just makes me so furious that nothing works.
My mum is 63 so I really understand how you might be feeling. It's just too young to go. I have two little boys under 8 who adore her to bits. They know what is happening and just keep asking why the doctors can't help her and why the medicine doesn't work.. I wish I knew the answer. So sad. Thanks for your post & reading my ramblings xx0 -
Thanks SoldierCrab for your reply. I might give them a call. It's a hard decision, but I guess the outcome isn't going to change. I'm going to lose her regardless xx0
-
So so sorry Mellyb. My heart goes out to you all. Big hug, Kate xox1
-
@Mellyb my heart breaks for u. Sending u the hugest hugs and positive thoughts xoxoox1
-
Thanks Kate and KiwiAngel for your thoughts xx0
-
My dad is in the same boat with mets prostate cancer in his bones. Chemo no longer works so he has dropped all pills apart from pain meds. He does take a bit of Cannabis oil but not too much that it will affect his liver. He still has the osteo needle and the hormone therapy to stop the cancer going rampant. He is much happier now and has stopped worrying about it all and just gets on with life. Enjoy your mum.
1 -
hi @Mellyb
now at computer
here is the link about helpline.BCNA Helpline 1800 500 258
If you have any questions, concerns or require any further
information or support please call 1800 500 258. BCNA’s helpline will now be open from
9am-6pm Monday to Thursday and 9am to 5pm Fridays.Sorry that this disease is so horrible.
hugs to all
soldiercrab1 -
Hi @Mellyb
Goodness don't know what to say! I can relate; my mother-in-law had a similar journey, she used to have a stent inserted on a regular basis to keep the bile ducts open into the liver. She became weaker and lost her battle at age 66. I lost my Mum at age 69 to lung and bladder cancer. Now that I am in my 60s I think what the!
It's a so and so! I see @SoldierCrab has given you the link for the helpline - hopefully they can offer you some comfort and understanding.
Enjoy the time you have with Mum and here's hoping she is comfortable and yes it is a good thing that she looks good.
Take care, sending you a virtual hug
1 -
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.
XO1
