Palliative Chemotherapy - your thoughts?

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.

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

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.

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.

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

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

When the term Palliative is offered, that means “end of life” care. It is the most effective, pain-free, comfort care a person can receive when ALL other options have run out.

It is not adding another long-suffering treatment in hopes of a cure - instead it is the most humane and caring form of living out your life instead of suffering. Pancreatic cancer for most people (but not always) is incurable.

I’m sorry about your friend. You can help her by reading up on palliative care and helping her understand it is a way for her to rid herself of the PAIN.

A big part of my hospital work was around the palliative care program in our Level One Trauma Center. It is never offered until all other medical options have run out. Although the word chemotherapy kind of threw me - perhaps a way of saying it will be administered via drip.
USA Gundy

Many thanks to all who have contributed to this thread, I'm sure we are now more informed about the subject and it may help us to make a difficult decision at some time.

It is a very individual decision but I remember my dad saying that had he known he only had 6 months he would have refused the chemo as those months were awful for him. But the drs had said he might live five years, so he took the treatment. How wrong they were. So sad. Miss him every day.

Diggingdoris - Cancer is indeed tricky, chancey, risky scary and a total crapshoot (as they say). Some are lucky, some pin their hopes to what the medics say, some are not lucky in the end.

I’ve had cancer - now seven yrs free. But I told my family if it ever comes back I am not going for treatment. I know personally (from within my married family) that chemo can be so wretched that taking the treatment is worse than living with the cancer. My MIL died in the end of treatment because it just ravaged her. There was no quality of life towards her end.

I’m so sorry about your father.

gangy5

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.

I totally agree. My best ever friend died of pancreatic cancer, aged 52- 6 months after being diagnosed. Instead of quietly spening her last few months doing things she wanted to do and see the few people she wanted to spend her precious time with- she went through lots of treatments that had no chance to work and made her last few months a misery.

It’s definitely a person choice. Many year ago my father had stomach cancer and given about 9 months to live. He started on som palliative chemo but after a couple of sessions gave up. His feeling was that it made him feel very ill so he discontinued treatment. He ate what he wanted, when he wanted and continued to be as active as possible until the day he died.

I admired him for making this decision. As it happened he buried many hatchets in the last 3 months of his life.

I’m not an expert ^Gundy* but here in the UK there’s a vast difference between Palliative Care and Palliative Chemo as my DH’s Consultant was most emphatic to explain. Palliative Care is end of life care, but Palliative Chemo can go on for years and is about quality of life and how to extend it.

Fleurpepper I so agree with you and Georgesgran you are right that with some cancers it can help people to survive a lot longer. My view is that with Pancreatic Cancer the average prognosis is 6 months and I sincerely dont think it should be offered to patients with no hope - I think it is inhuman and they should be encouraged to enjoy their last months with good pain relief.

Sadly, it is often the spouse/partner or family that almost forces a patient to go through very unpleasant and futile treatment- as they can't accept the imminent loss. My friend's OH, also an old school friend and very well off- insisted on taking her all over the country ot the most expensive specialists in the most expensive hospitals- totally against her wishes- and despite her doctors saying there was nothing to be gained.

My HoD was diagnosed with Pancreatic Cancer and his consultant at the Churchill offered him a trial of chemo which at the time was not necessarily mainstream therapy for soft tissue cancers.
He lived for 5 years of which I would say only the last 6 months to a year was really hard going.
Everybody is different so generalisations cannot be trusted.
Take the requisite medical advice -anecdotal evidence is not the same thing.

RosiesMaw, you’re right, everybody is different and generalisations can’t be trusted.
sadly it’s often the spouse/partner or family that almost forces the very unpleasant and futile treatment -they can’t accept the imminent loss
I’m unaware of any research that supports this statement.
If I’m to reflect on my own experience of bereavement/end of life decisions, I didn’t follow the path being criticised, neither did any of my loved ones or close friends
]I would welcome assisted suicide. I accept not everyone agrees with me and that there are spiritual/ethical/medical issues involved. I wouldn’t want anyone to feel fear of `judgement in this complex area of life

Sadly, it is often the spouse/partner or family that almost forces a patient to go through very unpleasant and futile treatment- as they can't accept the imminent loss
Well TBH I think that’s tosh as a general rule

It may be one person’s observation, but no more than that….

The very worst thing my husband had to cope with was when he was told there was no further treatment whatsoever for his cancer and he was facing death within two years. Had he been offered anything that might prolong those two years he would have not hesitated to grab it. He had fought the cancer and metastasis for ten years. He never gave up but it killed him in 6 months. It's an entirely personal decision and it's one that you are lucky if you have the option, or any option. Choice itself is a positive.

Gundy

When the term Palliative is offered, that means “end of life” care. It is the most effective, pain-free, comfort care a person can receive when ALL other options have run out.

It is not adding another long-suffering treatment in hopes of a cure - instead it is the most humane and caring form of living out your life instead of suffering. Pancreatic cancer for most people (but not always) is incurable.

I’m sorry about your friend. You can help her by reading up on palliative care and helping her understand it is a way for her to rid herself of the PAIN.

A big part of my hospital work was around the palliative care program in our Level One Trauma Center. It is never offered until all other medical options have run out. Although the word chemotherapy kind of threw me - perhaps a way of saying it will be administered via drip.
USA Gundy

Palliative chemotherapy is chemotherapy administered not as a cure but to prevent a cancer from growing and/or restricting the speed of its growth etc. It is not without side effects and as with ordinary chemotherapy people tolerate the side effects differently. Chemotherapy itself is usually very debilitating (it was much worse than my cancer and totally wiped me out for months, but did the job). A friend with a brain tumour had been having palliative chemotherapy for a couple of years, very successfully - between treatments, which were increasingly debilitating, he was able to lead a fairly normal life. But as his tumour symptoms returned he ultimately felt he was simply to tired to cope with the debilitation of the palliative chemo side effects. He turned down the offer of further treatment and faded away within weeks. The palliative chemo probably prolonged his life and improved the quality of life but it was the side effects that made him choose to quit.

OldFrill - thank you for your explanation. When I was involved with Palliative Care 25 yrs ago, it was a new concept in cancer care.

A quarter century later you can only imagine the new strides in technology/medicine, applications and treatments, new guideline that are now used in the cancer realm.

The term “palliative” still means *to ease the pain or force of, without curing.”

The term “chemotherapy” means prevention or treatment of disease with chemicals.

Coupled together it threw me, but perhaps your national health system (here too?) has incorporated the two taking it to new vistas in cancer research.
Blessings to all cancer patients.
USA Gundy

RosiesMaw

^Sadly, it is often the spouse/partner or family that almost forces a patient to go through very unpleasant and futile treatment- as they can't accept the imminent loss^
Well TBH I think that’s tosh as a general rule

It may be one person’s observation, but no more than that….

I am so so sorry your OH suffered from this condition, but so glad he survived 5 years which he enjoyed sharing with you.

With pancreatic cancer, this is very rare, sadly. My friend was not the stronges of person, and was always frail. It is a shame you choose to call my comment 'tosh' in this context.

My observation comes from many professionals specialists in end of life care, family and friends, and one organisation I belong to. A very large number of cases, sadly, and over a long period of time.

‘Often’? ‘Many’? ‘A very large number of cases’? How do you define ‘often’, ‘many’ and ‘a very large number’? These are phrases that you use (may I say ‘very’?) often. You have a tendency to exaggerate in this way FP, and in this context it isn’t helpful.

I am sorry you find it unhelpful. I have spent my whole life surrounded by health professionals and the subject has been discussed with many of them over a long period of time. No exaggeration, sadly.

I posted this on another thread but feel it is relevant here too:

Hospices provide amazing care and support for people facing end of life and making choices; patients and families are supported

I volunteer in a hospice. It is a privilege to see:

a) the change in patients when they arrive in terms of being provided with appropriate care and medication to ease pain
b) the quiet acceptance that so many come to as they come to the end of their life
c) the support that enables families to come to terms with their relatives time to come to the end of their life
d) the support that is provided so that the patient and family can prepare, and for the family after their loved one has died.

Hospice type care should be available to all. Palliative care training should be standard across the NHS