Palliative Chemotherapy - your thoughts?

it’s a very individual decision
Thanks Quichette. This interesting and varied thread confirms that. I’m also interested that the contributions come from an older age group with a fair amount of life experience. It’s a relief the discussion has remained calm . One of the issues it raises for me is end of life care and my wish that this country could move towards assisted end of life care

I have a friend just starting on this. If it gives her extra time, she says, she is happy to continue with it .

My husband of 45 years died of a rare blood cancer, Mantle Cell Lymphoma, on Friday, November 10th. He was diagnosed in 2018 at Stage IV. Usually patients live less than 2 years. He had a stroke with his first chemo treatment but recovered fairly well with much effort on his part. He had a year of remission and then was enrolled in an experimental drug oral chemo trial. He began to fail in October and although not in pain had some distressing symptoms including several falls He was admitted to the hospital last Sunday and had a number of tests. It was found that the Lymphoma had invaded his spinal fluid and brain. His final directive was that no artificial ventilation or nutrients be administered if there was no chance of meaningful recovery and those wishes were followed. He died peacefully, blood cancers do not usually cause great pain. His daughters and I were with him. He chose to donate his body for research. His sister was recently diagnosed with a Lymphoma although a more common type which is more treatable. The doctors and researchers felt the cause was likely a childhood chemical exposure to a pesticide or herbicide as two cases in the same family at the same approximate ages is very unusual. My husband was a very brave man. He practiced Election Law (as a liberal Democrat, I hasten to add, and worked for a U.S. Senator untouched by scandal). He was kind and an ardent activist for the Homeless, the Civil Rights, Women's Rights and LGBT Rights Movements. I am glad that he was able to have five years to enjoy reading about history, napping, watching old films, playing and designing military board games, eating all the Cadbury Flakes he wanted and spending time with his cats, family and friends. Treatment, although difficult, was worth it to him. It's a very individual decision.

It has to be up to the individual. Weighing up the pros and cons. If its palliative chemo it's about trying to prolong what time you have left. But as someone has already said chemo in itself can make you very poorly. So it's the difference between perhaps shorter but a little more quality time or feeling very poorly from the chemo for not necessarily much more time.

Ikiesgranma sending you hugs and healing vibes. It's so important to have things to look forward to x

I have an aggressive,rare cancer called leiomyosarcoma which was found in May 2021. In February this year they found two metastatic tumours in my pelvis which are inoperable. I started chemotherapy in April this year but after three rounds they had doubled in size. I then started another chemo which put me in hospital and left me with some serious side affects. After three rounds they had grown a centimetre each which they would call stability and I would carry on with the treatment. Due to the harm it had caused they said they couldn’t carry on with the treatment. They said that I should stop treatment and enjoy the time I have left ie months not years. My youngest daughter has brought her wedding forward to February next year and we’re expecting a granddaughter in march. I said no, I am not ready to give up and will keep trying treatment until I personally feel that I can’t do anymore. Until you’re in this position you have no idea what you’d do to spend as much time with your family and making memories for them.

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.

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.

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.

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

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,

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.

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"

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.

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.

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

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.

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.

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

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.

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

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.

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

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

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.