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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To hope there will be less 'barbaric ' ways of treating cancer?

42 replies

malificent7 · 02/07/2019 19:15

I know 'barbaric' is an emotive word to describe life saving treatments but i work in a hospital and that's how a patient described her chemotherapy today.

My mum died of cancer and the chemo and radiotherapy had bad side effects. It was socially isolating for her as she had to avoid us if we had sniffles due to her compromised immune system.
Obviously it is worth giving these treatments a go but i hope there will be a gentler drug in the future.
But perhaps an aggressive disease needs an aggressive response?

OP posts:
malificent7 · 02/07/2019 20:29

I will watch that...it is just heart rending...much love to all those who have endured this...it dosnt seem right!

OP posts:
orangeshoebox · 02/07/2019 20:32

I have no polite words for people who peddle cbd oil as a cancer cure.
afaik it might work for some pain relief and anti inflammatory and other effects. but it's not a cure.

if it were promising then you could be sure there would be clinical trials left right and centre.

MrsAitch13 · 02/07/2019 20:36

My husband's prognosis was delivered in the most barbaric way I have ever witnessed. Because of that and his treatment following a fall, he declined chemo and radiotherapy and died ten weeks later.

I'll never forgive them.

user1471453601 · 02/07/2019 20:42

20 years ago I had breast cancer. I had a full collection of lymph glands and six weeks of radiotherapy.

Two years ago, I had breast cancer in the other bteast. They took one of my lymph glands out, and I had three weeks of radiotherapy.

That sounds like movement in the right direction to me.

I don't know if chemo is getting more gentle or if other forms of treatment is getting any better. But I'm sure the health service is trying, and getting it right most of the tiime

orangeshoebox · 02/07/2019 20:45

..once you get past the dragon gp...

endoflevelbaddy · 02/07/2019 20:52

My mum's going through breast cancer treatment at the minute, and you're right, it's absolutely horrific.
I also work for a pharmaceutical company specialising in haematological cancers so it's been eye opening seeing what some of these 'side effects' are actually like to live through.
There is so much research going on and so many new treatments coming through that I am really hopeful for the future of treatment. It doesn't make it any better for those suffering through it just now though ☹️

bobstersmum · 02/07/2019 20:59

Yanbu

fiftiesmum · 02/07/2019 21:08

On a research basis the results used to be based on "overall survival" ie percentage of people didn't die within a time period of the new drug compared to standard treatment. It is now changing to progression free survival where the disease is kept under control compared to standard treatment. Car-T where the cells are changed genetically is still quite rare.
As a previous poster said the immunotherapies are making tumours completely disappear and the kinase inhibitors are stopping tumour growth for many years with many people having no side effects but don't work at all in some people while a few people will get quite horrendous side effects. We are going in the right direction.
If we can do our bit by not smoking, keeping weight down and our daughters (and sons eventually) having the HPV vaccine then risk is reduced.

niceupthedanceagain · 02/07/2019 21:08

YANBU at all. I am completely terrified of the prospect of having to endure it.

Immunotherapy seems promising, a close relative was diagnosed stage 4 lung cancer and until very recently it had been kept at bay and she was able to have a decent quality of life, for three years.

applepieicecream · 02/07/2019 21:20

My husband has been living with cancer for the last couple of years. There are lots of non chemo treatments available for many cancers although chemo and radiotherapy remains the mainstay of early stage cancers. Huge drives have been made in the analysis of tumours for markers and mutations and these can drive treatment over and above chemo without the side effects.

Husband has had chemo and radio and although not great they were no where near as bad as he had expected. Other treatments such as hormone treatments with manageable side effects can control cancer for sometimes years.

The real tragedy is not the lack of treatments it’s the lack of accessibility of them. For stage 4 cancers your prognosis is significantly improved if you are treated in a cancer centre with a research facility so : Royal Marsden, Christie, Newcastle, Oxford, Southampton, UCH / Royal Free and a couple of others. Unfortunately it’s also a fact that for stage 4 patients private patients and those with the ability to pay for treatment will have much greater access to newer, less invasive and more targeted treatments and thus likely to live well and longer. These are almost always standard of care internationally but deemed too expensive on the NHS. The CEO of bowel cancer U.K. for example speaks about this quite openly

This is the travesty of cancer care in the U.K. My husband is a private patient, he should have been dead a long time ago but somehow he’s still here and still ok (currently sitting next 2 me working on his laptop having been at work all day and out for a drink with a friend) and a significant reason for this is because he’s having treatments the NHS simply wouldn’t consider him suitable for, actually they wouldn’t know because they don’t cover the testing he had to identify which treatments might work.

Scottishgirl85 · 02/07/2019 21:27

My husband had to have a testicle removed due to cancer 6 years ago and has had the remaining testicle removed this week due to recurrence. Cancer knows no bounds of cruelty. My wonderful husband also happens to be a cancer research scientist and is developing treatment that harnesses the patient's immune system to kill their cancer from within. It's truly awesome work. There is always hope 💐

fiftiesmum · 02/07/2019 21:42

One of the downsides of the newer treatments is the cost - a few thousand pounds for each cycle of immunotherapy, tens of pounds for a single tablet (which has to be taken daily) much of this is because of the research costs and immunotherapies as biological products are difficult and expensive to make. Unless NHS funding is vastly increased then availability will be restricted.
I am sure in those countries where private medicine is the major health sector there are vast numbers of people who have no access to any cancer treatment

EmperorBallpitine · 02/07/2019 21:49

It also very much depends on what type of cancer. There are some very low impact tablets for my type of cancer which have given me several years of healthy life without having chemo. Yet.They are doing new research all the time.

BurleyBob47 · 02/07/2019 22:07

I believe the time will come when radio and chemotherapy will be a thing of the past. I moved to France three years ago to work for a company starting to make gene edited T cells to treat lymphomas. In clinical trials with children and young adults, treated with other CAR T-cell therapies, 80% of patients went into remission, sparing them from repeated rounds of aggressive chemo. It's not going to be a magic bullet but it's one more weapon to fight this cruel disease.

ragged · 02/07/2019 22:11

Has anyone read Henry Marsh's book, about operating for brain conditions, including tumours?
He writes a lot about 'wrecking' people when surgery goes wrong. But has to make decisions about tumours that can't be treated by another means & will lead to death or more & more disability if not removed or reduced. You can read his impotence in the stories, how hard it is to help these patients.

mimimoo22 · 02/07/2019 22:28

I had chemotherapy as a child almost 30 years ago.Barbaric is an understatement! Bald , bloated, vomiting blood, tingling legs fainting regularly locked away from everyone for the best part of a year. The effects of chemotherapy were horrendous nothing I have been through since is anywhere near that hell.
Then having to go back to school wearing a wig so weak I could barely drag myself between classes and socially damaged and just having to cope as if I was ok and normal?????
No wonder I am now socially anxious. Oh and most of the drugs I had back then are still in use today on children, it’s not changed really in all these years.
My dad died of cancer also but he was detected too late for any treatment, maybe that was kinder for him? I just don’t know it still hurts so much he died.

iVampire · 03/07/2019 09:09

‘I hope so, and from what I’ve heard researchers are looking at ‘kinder’ treatments (especially for kids).’

This is basically the strap line for . Because some blood cancers have very effective and (usually) kind treatments, others are really brutal ‘need to throw everything at this’ approach. Leukaemia is the commonest childhood cancer, and getting better treatments for the type most DC have (ALL) is a major research goal.

I have CML and am on a tyrosine kinase inhibitor - the generic version became available just before my diagnosis, so I am cheap for NHS for this type of drug - about a mere £10k a year (that’s just over £25 each tablet, and I’m on the lowest dose of one tablet a day)

But I am (right now) living the desired outcome of the aim of much cancer research. I am not cured of being cured, but the disease process is so effectively suppressed that I may as well not have it - the ‘cancer becomes just another chronic disease’ paradigm

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