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Life with bowel cancer

TraceyJ61

Palliative Chemotherapy

Hi. Is there anyone who has been told they are on Palliative Chemotherapy? I have a 4cm tumour on my sigmoid colon and liver metasis. I was told that as the mets on my liver were quite extensive they didnt think that the Leeds Liver Unit would consider me for an op so there was 'no point' in operating on my bowel and I was to received palliative chemotherapy.

They did an MRI on my liver as a base line scan in Sept and started Oxaliplatin and Capacetabine. I was then passed to a different oncologist who was talking possible operations if successful. I managed 6 full rounds but had problems with throat spasms especially when they put the flush through after my chemo IV and when I had the dye injected for my follow up MRI so they reduced to half the oxaliplatin on the 7th treatment.

Last week I was told that the liver MRI showed some reduction and that they would pass the first MRi scan from August and the second MRI to Leeds Liver MDT for consideration for operation. I also had a CT of my bowel/abdomen and lungs which apparently was unclear if any reduction on the bowel tumour.

Have just got letter through today to see the original doctor who put me on palliative chemotherapy next Weds so am now worried that its not good news from Leeds and no op.

So basically my question is If you are on palliative chemotherapy and it is working do they continue with chemotherapy indefinately or is there a limit to how much you can have and they stop? Will they continue with treatment to see if reduces more and reconsider operation or do they give up and manage symptoms only? or does palliative mean they have given up trying?

Chris82

Hi @TraceyJ61.

'Palliative' is an emotive word, but it's important to remember it doesn't mean 'end of life'. It just means any treatment which does not have curative intent. This can change - I have been on palliative treatment and then gone on to have operations.

But in the case of people newly diagnosed with advanced cancer, the 'curative' and 'palliative' chemotherapy usually consists of exactly the same treatment. Oncologists will take different approaches in terms of how they describe it. Hitting with people with the P word is quite an old fashioned approach - and I think unhelpful for many of us - but they probably did it with the best intentions.

I don't think you should read anything into which oncologist the appointment is with. They all do the same job, it may just be a division of appointments within the team based on availability.

As far as I'm aware there is no arbitrary limit to how much chemotherapy you can have. If one isn't working anymore, they might try another one.

I hope that helps. Remember your team are there to help and should explain everything to you. If they're not clear about what the options are, ask questions.

Chris

Chris82

And just to add, you might hear some of us talk about being on 'maintenance' chemotherapy, keeping our disease stable for years. In medical terms, because it isn't curative, that is also palliative chemo. It's just a word.
:x:

Buzylizzy

Hi @TracyJ61

Totally agree with everything @Chris82 says above.
I too started on 'palliative' chemo and told I was inoperable, but after 8 cycles was it had worked far better than they imagined and I had a liver resection of 80%. I then had more chemo, a clear scan, it came back 2months later, more chemo as now inoperable again but surprise surprise the chemo worked again and had HIPEC this summer.

No one knows what will or won't work and I found my scans often did the rounds amongst the different disciplinaries as they all have their own opinions. Don't get hung up on all the jargon, it can be exhausting and you can always ask for a second opinion if you feel you need one. Best wishes :x::x:

Bear G

Hi @TraceyJ61
Just to follow on from @Chris82's post, he and I were at a meeting with oncologists and surgeons earlier this year where, amongst other things, we discussed the language and terminology they use with us.

'Palliative' is definitely a term that causes concern but shouldn't. I've been on palliative Chemo for over three years now but I call it 'maintenance' Chemo as that's what it's there for - it helps to control the cancer.

It's a strange things that treatment for diabetes and hypertension is palliative but they do t use that term.

As you've heard from the others, there's no time limit on how long they treat if the treatment is working, and many people on maintenance Chemo have seen such good responses that they've been able to have surgery.

Hope this helps a little. Please ask away with any questions.

Big hugs
Bear
:x::x:

TraceyJ61

Thank you so much @Chris82 @ Buzylizzy and @Bear G for that explanation. Its so helpful I wish the doctors/nurses had explained it in that way or at all. I fainted with the shock when they told me. I am so thankful that the chemo is working and the reduction was shown after only 6 rounds and now know that if I cant have an operation at this time with continued chemo it may be possible in the future . So thanks again for your replies I feel less nervous about next Wednesday now.

Tracey :x::x:

Baxter2

Hi @TraceyJ61

I agree with what the others have said. I think it’s unfortunate that the medical profession use the word ‘palliative’ chemo as we all associate it with palliative care.

I will never ever forget the day when I was told that I was no longer curable, was inoperable and would now start on palliative chemo and not expected to live beyond 1 year. I was just devastated. This was almost 2 years ago now and 2 surgeries on and lots of chemo, I’m doing pretty well! Needless to say, I no longer have that oncologist. For a variety of reasons, I absolutely believed she had given up on me so I understand where you’re coming from. You may need to consider requesting the other oncologist who was hopeful of surgery in the future since persistent negativity is pretty detrimental to health in many ways!

Like the others above, I’m on long term or ‘maintenance’ chemo and fortunately tolerate it very well. Hopefully you will do the same!

Never lose hope!

Hope you can have a good Christmas

Lots of love

K 💚💛💜❤️💙

TraceyJ61

Thanks for your reply @Baxter2. Yes that is exactly what I understood when they told me and no one has explained it to me until Chris82 and BearG replied to my post. I have come across first line chemo, 2nd line chemo etc on my searches but started to worry what after that if they dont work? I was a lot more confident attending the appointment yesterday knowing that whatever the outcome I would still receive treatment which so far is working. My usual oncologist was on leave so that is why I saw the other one but actually she was lovely and gave me the good news that Leeds Liver Unit are going to see me to discuss options she couldnt tell me what those options might be but anything is better than nothing.

I had a good Christmas thanks hope you did too?

Thanks again Baxter2 :x::x:

Bear G

That's great to hear @TraceyJ61
So glad we could help reassure you and for you to be more ready to get lots out of yesterday's appointment.
Fingers crossed for your Leeds appointment but in the meantime it sounds like you have a nice team looking after you.
Big hugs
Bear
:x::x:

Baxter2

Here’s hoping you get some good options from Leeds @TraceyJ61 and glad you’re feeling more positive and optimistic!

I had a good Christmas thank you

Take good care,

K 💚💛💜❤️💙

TraceyJ61

Update - had appointment at Leeds Liver Unit yesterday and they offered me an operation Left Trisectionectomy which is basically 70% of my liver early March time. I have to have a PET scan first to check if there is any further spread of the cancer but so far its looking positive. I still have tumour in sigmoid colon but that will be dealt with after my liver. Its reassuring to know that they havent given up on me as I first thought when the doctor mentioned the P word.

Bear G

That’s great news @TraceyJ61
Just goes to show the P word doesn’t mean what we think!
Fingers crossed for the scan
:x::x:

Lizalou

Hi @TraceyJ61

That is very positive news and a great reminder that, as you say, palliative chemo can have great results.
Good luck with the scan. :x::x:

Baxter2

Excellent news @TraceyJ61

Fingers crossed your PET scan is positive too!

K💚💜💙💛❤️

El Ivan

That’s brilliant news @TraceyJ61 😃 they certainly are a great team at Leeds. They’ve looked after me for over 4 years now. Hope the PET scan shows no nasties and you can get that surgery.
😃:x:

TraceyJ61

Thanks @El Ivan @Baxter2 @Lizalou @Bear G for your messages of support. This site really helps as I live alone and whilst I have friends its hard to discuss with them. :x:

mem

Hi @tracey61 from me too. Its great news that you have now been offered a liver resection. So pleased for you. I was also under Leeds for my liver resection too.
Good luck with your PET scan. Lots of love :x::x:

Polly 1

Great news @TraceyJ61 I hope the PET scan goes well :x::x:

eyeofthetiger

@TraceyJ61 Fabulous news that you have been offered a liver resection and then surgery to get rid of the bowel beastie. Hope all goes well with the scan :x::x::x:

jules75

Hope everything goes well :x::x: