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Palliative Chemotherapy - your thoughts?

(107 Posts)
gangy5 Sun 12-Nov-23 12:22:06

Have any of you come across this and what are your thoughts on this? I have a friend at the mo who has pancreatic cancer and has had this treatment offered to her. From personal experience I don't feel it is ever appropriate in this situation and is simply adding to the pain already being suffered.

Katie59 Mon 13-Nov-23 07:03:32

I have a friend on “palliative” chemotherapy, after 3 rounds of breast cancer treatment that failed, she is generally well and accepts that she is needs to enjoy life while she can, family are close and supporting her as best they can.

Whiff Mon 13-Nov-23 08:04:22

I am glad for those who's loved ones had a peaceful death. My dad died in his sleep next to my mom. Unfortunately my poor mom didn't realise he was dead . Got up at usual time. Got dressed and then touched him . Even then she still didn't realise . Only after my brother and I got there found he had been dead for hours .

I have watched 3 people die since they did not have peaceful deaths. In each case it was horrific. I wouldn't like anyone to think death is like on TV . Also one another thread someone made out death was beautiful . I got jumped when I talked about my experiences. But then others shared their experience and it was the same of mine.

We all wish our loved ones would die peacefully pain free in their sleep but my experience is that the 3 people who I watched die died in agony. And as they where dieing each looked skeletal as there skin tighten round their faces . And at the point of dead lost control of their bladder. As my dad did but never told my mom . We had to tell her the look on his face was normal . When in fact he must have had a massive heart attack as his face was frozen in terror. Mom was a light sleeper but he never made a sound to wake her. She could never have coped if she knew.

Sorry if this has upset anyone but this is my experience. I nursed my husband ,helped mom with my dad and had my mom live with me the last 18 months of her life she had cancer and dementia. Did it ourselves without carers .

But if you need help get it and if you have to put your loved one in a home or hospice then do what's best for you and them. And never feel guilty if you need the help. It was my choice to do what I did but it cost me health wise. But didn't realise how much until after my mom the last one to die .

But the main thing is no matter how tough things get you do it out of love and love never dies .

gangy5 Mon 13-Nov-23 08:04:54

Thank you to all you lovely gransnetters for decribng you experiances and airing you views on this subject. I gather that it is standard practice for most people on palliative care to be offered chemotherapy. It is not for anyone to say what should and shouldnt be done. My personal view is that with most pancriatic cases the prognosis is terminal and that chemotherapy is a hard option. Why inflict pain on pain for longer than is necessary.
I regularly visit a friend who has pancriatic cancer. She had her first chemo two weeks ago and was so poorly she made the decision to suffer it no longer.

Grammaretto Mon 13-Nov-23 08:16:23

Surely it wouldn't be offered for no good reason
I would ask the consultant and specialist nurses about the implications.

DH had a form of chemotherapy and immunotherapy for 4 years following his diagnosis of advanced kidney cancer.
It was tough but probably prolonged his life and quality of life which he and I am forever grateful for.

Iam64 Mon 13-Nov-23 08:27:38

Grammaretto, my husband’s diagnosis took 8 weeks from the scans that showed lung, lymph, brain, bone cancer. Histology and several pathology investigations into biopsies confirmed kidney as the primary cancer source. Scans of his kidneys were unremarkable, the consultant concluded his immune system had washed it away but not before it spread to the areas kidney cancer metastases to.
He had drug and immunotherapy, the aim to slow the disease and improve his quality of life. The hope was he’d live anither 12-18 months. The consultant was clear though, that what happened in his brain would dictate that. The drugs and immunotherapy was effective with the cancers. The radiotherapy shrunk the brain tumours but destroyed carotid arteries which led to a series of strokes.

I’m grateful to the nhs for giving him the best chance to live longer and well. Its a dreadful, vicious disease

harrigran Mon 13-Nov-23 08:29:19

DH had palliative chemotherapy and the side effects were horrible, he became so incapacitated that he was unable to attend the hospital and the treatment was halted. In hindsight I wish he had not had it.

Grammaretto Mon 13-Nov-23 11:58:09

Maybe the doctors don't always know best. I am sorry to hear that it was so awful at the end Harrigran
Certainly there was a time about 3 weeks before his death when my DH was in hospital and we were told he could have some treatment which might prolong his life by a few weeks. I think it was a lung drain.
We refused that and got him home. Thankfully.

Iam64 so sad that you had to make those choices. Sending hugs.
My DH was "lucky" in that he died before his brain was affected.

Iam64 Mon 13-Nov-23 12:16:39

this thread is helpful as we are sharing experiences that I was fortunate not to have to face in my 30’s when my children were young. It’s interesting to find I’m not alone in feeling I may refuse treatment if/when my turn comes.

harrigran - I feel the same. We had 2-3 days a week at the Christie one week, including infusions/ the following week my husband would be tired and recuperating. I’d asked him on diagnosis if he’d rather nit have palliative treatment but he so wanted to live as long as possible. X

Iam64 Mon 13-Nov-23 12:18:08

Grammaretto - you were blessed to get him home. My husband was too unstable to move and needed nursing care at end of life so we stayed in a side room as he slowly died. Staff were wonderful

grandMattie Mon 13-Nov-23 12:51:29

Difficult to say.
My late DH had metastasised prostate cancer, turned into small cell cancer. He had been give 12-18 months, so we tried palliative chemotherapy. It made him so dreadfully unwell after the first two infusions that I decided he didn’t need this on top of everything else. In the end, he had less than 4 months after the initial diagnosis.
I think it depends how your friend reacts to the chemicals and how she decides to spend her last days.
All the best.

Naesodaft Mon 13-Nov-23 13:04:05

Nearly 5 years ago I had a mastectomy followed by a breast reconstruction using fat from my tummy. A few weeks ago I noticed a lump on my reconstructed breast. An ultrasound showed 2 lumps which have become larger over the past couple of weeks. Gp says not cysts or lymphoma and unlikely to be breast cancer as it’s not breast tissue. Currently waiting for an appointment to the breast surgery clinic. Mr google suggests breast fat necrosis. Wondering if anyone else on GN has experienced this and what the outcome was? Thanks in advance x

Notagranyet1234 Mon 13-Nov-23 13:05:14

My mum had breast cancer and had palliative chemotherapy KADCYLA for her brain metastases, it gave her 3 months of good quality life which enabled her to say goodbye to family from overseas and we all celebrated one last Christmas together. She had no side effects really after the first dose and went every 2 weeks for it, it took about 4 hours.
I was very sceptical about the potential side effects but actually she was mostly well which was different to the treatment chemotherapy that almost killed her.

Naesodaft Mon 13-Nov-23 13:05:56

Sorry, meant to start another thread rather than add to this one. Sorry

nipsmum Mon 13-Nov-23 13:34:51

I think age is a deciding factor in making a decision. At the age I am now my decision would be different from 30 years ago. I have seen my children grow up and my grandchildren reaching adulthood. There is no incentive to prolong life now.

missdeke Mon 13-Nov-23 13:39:11

Having already had cancer twice and remembering how I felt on Chemo I don't know if I could go through it again if there was no hope of a cure. But I am not ready to die yet so maybe if I should be put in that position I'm not sure that wouldn't just go for the chemo.

Petal1 Mon 13-Nov-23 13:40:33

I was a specialist palliative care nurse for people with advanced disease, including cancer. In my experience everyone is different and any decision needs to be made with as much information as possible.
Palliative chemotherapy can help relieve distressing symptoms, however it does sometimes come with unwanted side-effects.
I would advise your friend to speak with her specialist nurse, and/or contact the macmillan telephone helpline. You will find the number here www.macmillan.org.uk

Jaxie Mon 13-Nov-23 13:43:29

My friend died of pancreatic cancer after months of palliative therapy which didn’t really ease his decline. My own doctor told me she was diagnosed with bowel cancer; she said the treatment was so horrific she would never go through it again. I have decided that if I am diagnosed with cancer ( I am 80) I shall decline chemotherapy and rely on pain killers. This sounds gloomy, but our bodies aren’t designed to last forever.

cc Mon 13-Nov-23 13:54:40

My father accepted palliative chemo for his lung cancer but felt so bad that he discontinued the treatment pretty quickly.
He died within a few weeks, sadly in hospital which was not what he wanted but which was best for my mother. He was given sufficient morphine to remove his pain and this is probably what eventually shortened his life, a good compromise in our opinion.

greenlady102 Mon 13-Nov-23 14:05:09

Grannynannywanny

Palliative chemotherapy can ease pain by partially shrinking a tumour and relieving pressure on other organs. Although it mightn’t prolong the patient’s life it can improve the quality of their remaining life by easing distressing symptoms.

This. It offered because it can probably improve the quality of the time that is left or because there is something specific that the person want to get to, eg a wedding. Palliative care is never offered as a sop or a treatment and the option is always to stop it if there is no benefit or the person changes their mind. I don't think its up to anybody other than the person and the doctor and maybe family members to decide whether or not to do it.... I am not sure what you mean by "appropriate"

greenlady102 Mon 13-Nov-23 14:06:11

Jaxie

My friend died of pancreatic cancer after months of palliative therapy which didn’t really ease his decline. My own doctor told me she was diagnosed with bowel cancer; she said the treatment was so horrific she would never go through it again. I have decided that if I am diagnosed with cancer ( I am 80) I shall decline chemotherapy and rely on pain killers. This sounds gloomy, but our bodies aren’t designed to last forever.

chemo (and radiotherapy) can have a pain relieving effect.

SWT61 Mon 13-Nov-23 14:22:11

My mum was given 6 weeks to live she had had a mastectomy 5 years previously but it came back in her lung. She was in hospital due to breathing problems and was given chemo, even though she had been told 6 weeks. It absolutely floored her and she was like a zombie, i feel we were robbed of her last few weeks due to this, she was not aware of us being there, so no goodbyes nothing. I myself would not go through it after witnessing my mums demise. Its an individual choice though to be respected,

SWT61 Mon 13-Nov-23 14:23:56

Forgot to add, she was only 62, 27 years ago.

icanhandthemback Mon 13-Nov-23 14:25:29

My MIL refused all treatment when she had cancer of the kidneys. She’d had breast cancer in her 40’s and had had radiotherapy without trouble but had seen her friend suffer from Chemo so wouldn’t even consider it. We accepted her decision and she died peacefully a month later the first night of her morphine driver being set up. As sad as we were to see her go, we were so glad she was pain free.
I have watched several people die and each time it has been peaceful.

madeleine45 Mon 13-Nov-23 14:53:48

I have a second form of cancer now, having had the first one twenty years ago,. So the first was ovarian cancer with operation and 6 months chemo. It was very hard going and as coffee is my favourite drink to have a constant metal taste in my mouth was another horrible side effect. But it did pay off as here I am so many years later. However facing another sort of cancer it could be different. But what WILL be happening is , whilst I will listen to comments from knowledgeable people I will make my decision about my life in this as in other areas of my life. Whatever I have done , good or bad I have accepted responsibility for my own choices and feel entitled to continue to do so as long as I am able to make decisions. Whilst family and friends will naturally be sad to lose someone, it surely is the persons own choice as to what they will do, and family can do their best to support them in whatever happens.

Sennelier1 Mon 13-Nov-23 16:23:29

Our best friend died in august from pancreatic and liver cancer. He was only 66, got diagnosed the day of his 65th birthday. They said half a year without treatment, a year with treatment. Operating was not an option in his case. He chose the treatment, and he and his wife have had a very good last year (14 months to be exact) , especially the first 10 months. The first chemo (8 months) did miracles. He felt great, they travelled, gave parties for all of their friends, enjoyed life to the fullest. With the second chemo (5 months) he still was very much with us. The last month was a continuous decline, but he didn't suffer. Painkillers in skinplasters and in pills. We, all their friends, feel gratefull to the doctors, the hospital, the medical knowledge that helped him so much.