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lindyloo

Palliative/maintenance

Hi all is palliative chemo and maintenance chemo the same? Daves been offered palliative chemo not yet he's still fighting fit but I just hate the word palliative sound's so final were as maintenance sound's like yes I've got cancer but controlling it

Baxter2

Hi @lindyloo

I’ve been on ‘palliative chemo’ since Feb 2016 (Folfiri and Cetuximab) but choose to ignore the word palliative as like you, I don’t really like it!! I believe it’s because I’m incurable.

Sending you both lots of love,

Karen 💚💜💙💛❤️

Frances Styles

@lindyloo, same for my Dave, palliative chemo, we were so upset, but palliative is maintenance, for us it meant he's inoperable, incurable but treatable. Over this last year he's had a good response to chemo and his oncologist has referred him once for surgery which was thought not ever possible, although he didn't get to surgery, Oncologist is recommending SIRT next, so we consider it maintenance with benefits😂 Many people on here have been on maintenance for years so we have so much hope. Love Frances :x::x:

lindyloo

Thank you @Baxter2 @Frances Styles it's such a horrible word palliative for me it's sound's like a death sentence, yes Dave's got cancer has had it and fought it for 5yrs as many on this forum have proved it cam be maintained like high blood pressure diabetes ect, I'm banning the word palliative 👍

Forum user

hi @lindyloo for me they are all just fancy Oncology terminology, I just like to think that I am on treatment, if you went back five years to the start of Dave's cancer there will have been lots of people that were fit and healthy that have never made it this far, and yes ban the word palliative and just try and enjoy every day we have on this planet as no one knows when it's there last, wishing you well take care cheers john.:x::x::x:

Lirio345

Hi @lindyloo, words can be so powerful can’t they, but the word palliative is gradually changing in its meaning to mean treating rather than curing cancer. I have been on palliative care for nearly six years, but never use the word, - nor does my hospital. I usually say that I am on permanent chemo - like type 1 diabetes, I need medication to keep me alive. Bin the word and take very good care, Kim :x::x:

MrADW

Hi @lindyloo

Yes, "palliative" wasn't a word I was ready to hear. It certainly set me back a bit

I think the viewpoint shared by folks here is correct - try to ignore it, or view it as a maintenance regime.

Alan

lindyloo

@Lirio345 @MrADW Couldn't agree more "palliative ' is now banned nasty word and yes @cyclingjohnny never a truer word said I say this to dave all the time live each day for the day because nobody knows what's round the corner :x:

adnil

Hi @lindyloo my oncologist told me ‘it’s not palliative care but maintenance’ and that is how I always refer to it. 😊:x::x:

clarey

@lindyloo I was devastated when I read the word palliative. What @Lirio345 sums it up - its like any medication to keep us going. The main thing is it is treatable. Maintenance is a much acceptable word :x::x:

lindyloo
Quote from @clarey:
@lindyloo I was devastated when I read the word palliative. What @Lirio345 sums it up - its like any medication to keep us going. The main thing is it is treatable. Maintenance is a much acceptable word

Definitely I think we should get a petition going banning the word palliative, you wouldn't tell a diabetic that they are on palliative insulin would you :x:

Siona

Such great feedbacks from everyone here ❤️People who are fortunate enough not to be touched by cancer don’t even know maintenance chemo is a thing and that hospices can provide support outside end of life care. Need to bring more awareness to these topics :x::x:

Bear G

Hi @lindyloo
I’ve been trying to get the language changed for ages.
As the others have said, often palliative and maintenance chemo are the same thing. I’ve been on maintenance chemo since January 2013 and it’s been doing a great job of keeping things under control - I’ve even had clear scans for the past 2 years, and manage to lead a pretty full life thanks to my chemo.
Big hugs
Bear
:x::x:

louise28

Hi @lindyloo and others. I think these are all very important points. I totally agree that we need updating of terms and more education. Even many medics are using terms like palliative when (to my mind) these are not necessarily palliative cases.

My understanding is that the use of the term was an alternative to curative, i.e when, many years ago, there were less options for radio, surgery, chemo drugs etc, and it was an either/or thing. i.e give someone a chance of cure vs keep them comfortable and out of pain for as long as possible.

These days that has totally changed with the possibility of long-term chemo and control of cancer. Also, what is seen as maintenance or long-term chemo may also, in some cases, lead to cure (through surgery or through good responses to chemo and radio etc).... We have all seen many examples of this on the forum.... someone who has a small bit of visible cancer on a CT scan and no symptoms and needs to be on chemo to stop it getting out of control is not really, as far as I can see, on palliative chemo, but long-term chemo or treatment. Equally you could need palliation even if your cancer could potentially be cured.... As @Siona says, just as hospices are not for end of life, my understanding is that neither is palliative treatment (always).

I have heard people differentiate between palliative treatment as end of life and maintenance as long-term management where the person is not in imminent danger, but my issue is that the terms or used interchangeably and not always correctly by medical personal. For exampl, I was told by my nurse that I would only get palliative care from when I got my recurrence, but my question is a) ive a tiny amount of disease in same spot which is being blasted with stereotatic radio....b) ive been told no need for chemo until there's another recurrence that merits it and c) nobody knows whether the radio will get rid of all the cancer in my body. So I'm not on maintenance chemo, my recent treatment is attempting to rid my body of the cancer visible on a PET... but I'm no longer on a pathway that is deemed curative...so where do patients like me (and many others) also feature?! Interestingly no other healthcare people have mentioned palliative care other than the nurse so god knows if that is just poor training/clumsy terminology.

:x:

lindyloo

@Bear G @louise28 very well said yes should change how the medics say thing's for me palliative is an out of date word very harsh like you louise28 Daves cancer is minimal and the way the oncologist put it across was that's it yer doomed until I researched all the options and read all the good results on this forum eg BearG story in fact I used BearG,s story as an example when we spoke to the oncologist again haha he was a bit lost for word's in fact haha atm Dave's doing great fittest he's been for a long time and hopefully that's what is keeping us going, yes we know that he will eventually get maintenance chemo but we will cross that bridge when we come to it :x::x:

louise28

I can totally understand it's use if someone is near end of life or has advanced disease that requires pain management (because palliation should be about treating symptoms) but when someone is on long-term chemo or is 'unlikely' to be cured, these days it makes no sense to call it palliative... in my opinion! :x:

Bear G

So glad my story has helped!

I’ve presented on this topic on a number of occasions and oncologists are generally receptive to this, there just needs to be a unified approach.
It’s included in this video I did for ecancer ecancer.org/...nt-of-advanced-colorectal-tumours

I’m still working on it, and am currently involved in a project for the Royal College of Surgeons (Edinburgh) which I hope will roll out early next year.

Big hugs
Bear
:x::x:

Quote from @lindyloo:
@Bear G @louise28 very well said yes should change how the medics say thing's for me palliative is an out of date word very harsh like you louise28 Daves cancer is minimal and the way the oncologist put it across was that's it yer doomed until I researched all the options and read all the good results on this forum eg BearG story in fact I used BearG,s story as an example when we spoke to the oncologist again haha he was a bit lost for word's in fact haha atm Dave's doing great fittest he's been for a long time and hopefully that's what is keeping us going, yes we know that he will eventually get maintenance chemo but we will cross that bridge when we come to it

lindyloo
Quote from @Bear G:
So glad my story has helped!

I’ve presented on this topic on a number of occasions and oncologists are generally receptive to this, there just needs to be a unified approach.
It’s included in this video I did for ecancer ecancer.org/...nt-of-advanced-colorectal-tumours

I’m still working on it, and am currently involved in a project for the Royal College of Surgeons (Edinburgh) which I hope will roll out early next year.

Big hugs
Bear
:x::x:

@Bear G,I've just watched your video and everything you said is spot on ,fantastic presentation thank you so much for sharing it :x::x: