NHS - How many cycles of chemo are usually offered to people with Stage 4?

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I was given info at the beginning, but I was in such a state of shock it all went in one ear and out the other!

Am I right in thinking that if you're potentially curable, the NHS will throw everything at you, no matter the cost?

But, how does ot work with us Incurables?

Do they limit the amount of treatment we can have, because we're basically not very 'cost effective'?

Basically what I'm asking is, does there come a time whern the Oncologist will say "you've had your nhs funded (insert number) of treatments. We're not spending any more money on you. Adios and good luck"

Do people on palliative  care eventually have to go private if they want further treatment to keep them going a bit longer????

  • Hi

    To be honest i was told i would have four cycles, one every three weeks, but i did have a problem, it was stopped. I then got another chemo for six cycles, then offered immunotherapy every three weeks for two years, which i completed.

    At one point a slight growth occurred, and had radiotherapy..

    I was incurable from day one. I know when it  comes back i am back on chemo, i do believe this is the way they go, till every thing they can offer has been done,

    Others i am sure will come in, they do not just give up on you as such,

    I hope others can advise Ellie 

  • Just read your profile i have Lung Cancer also. though no spread as yet,

  • Thanks  for replying Ellie.

    I wonder if they're offering you more treatment because yours hasn't spread yet?

  • Please don't worry,  as Ellie says they don't just give up on you. If there is a treatment which will help and you are suitable for they will give it to you. Best wishes

  • If that were the case then I used up my quota ages ago, what with three different teams of surgeons, two months inside and more 'procedures' than you could shake a stick at. Still being monitored and looked after. I don't think it's rationed. It's all down to what you can take and what good it might do you.  They do prioritise of course, but everyone does that - GPs and all. I think that realism does have to play a part as even if treatments were available, if you were too weak to withstand them, then a judgement has to be made re. your quality of life. A lot of us would I think, if we ever arrived at a certain point, after perhaps experiencing many treatments over time, make the same decision ourselves.  I for one believe my team do their utmost for me and will continue to do so.  Rainie x

  • I don't think its ' one size fits all' , because everyone faces their own type of disease. I should be dead if you check my profile but i will die eventually from this. Im just ticking along on maintenance treatment but situ getting worse. The first thing i did was drop all expectations cause theres no guarantees.

  • Hi . I honestly don't think it's a question of cost effectiveness. I touched on this at my last visit to my Oncologist. I've recently completed 6 cycles of chemo. He's hopeful I won't need more treatment until Xmas/New Year. I asked about how many chemo's could one tolerate. He said first round of chemo normally successful, 2nd bout can be equally good but thereafter the body can start to react to chemo, changes in bone density etc. But he was confident there's always medical breakthroughs being made.

    I did ask about a trial going on which was proving successful (Dostarlimub) but apparently it's not suitable for my type of tumour. He's continuing to look out for suitable trials, they might not be in my area but I could stay with my sister in Kent if I needed to travel to a London hospital.

    I did ask about an alternative to Paclitaxel ( I now suffer peripheral neuropathy) but it's expensive and he didn't think the health trust (Lincolnshire) would pay for it. I'm 69 and wonder if I was 39 would they spring for it.

    I don't get the impression that they'd give up on me. I haven't given much thought as yet to if my cancer metastasises to my brain or spine. I'm not sure as to when I discuss end-of-life care and with whom. Would I want to go in a hospice or stay at home. My hubby is the stick head in sand variety and I'm not sure how he'd cope if I became totally disabled or cried out often in pain. He didn't like it when I did cry out before my chemo reduced my tumours.

    One of my best friends lost her hubby to Pancreatic cancer, from diagnosis to passing was just 12 weeks. He was in a hospital and she so wished he'd been moved to a hospice - she now volunteers there and says it's so calm and tranquil where nothing is too much trouble for anyone whereas in the hospital all was pretty frantic with staff having little time to attend to patients.

    Hugs, Barb xx


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  • Hi Harebelle,  I was put on 2 years immunotherapy, when the 2 years was up the oncologist said we'd keep going cos I was tolerating it well, but to take a break for holidays, Christmas and Easter  birthdays and such. Xx

  • I had this discussion with my oncologist last week with respect to immunotherapy.  After 2 years there is a review to discuss results to date, outcomes, quality-of-life and the potential future benefits of treatment.  Data/history shows that after 2 years, the incremental benefit of further treatment can be negligible.  But if stopping treatment was the school of thought, you would still get regular scans and if new growth was detected, this would be treated.  My understanding is that it's not a case of "you're allocated X budget or Y months of drugs".