NHS funded chemo - who qualifies

[TeniOla]

Hello,

My mother who is 80 was recently diagnosed with pancreatic cancer on the head of the pancreas. It's stage 3 and inoperable due to proximity to vital blood vessels. 

The Oncologist talked us through 3 chemo plans and their response rates. He recommended my mother takes a combination of 2 chemo drugs for 3 - 6 months, the response rate it 35%. I forgot the names of the drugs and will post an update when I get details.

 

What shocked me was that we were told the chemo treatment is not available on the NHS because there is no metastasis. We have to self fund at potentially up to £4k per month. When I asked why the treatment is not available on the NHS, I was told there is no data to support the efficacy.

 

I will be speaking to the Oncologist again, we ran out of time and I have more questions such as is it the drug combination that is not NHS funded or the type of pancreatic cancer?

 

Has anyone had this experience and has advice they can share? Is it really the case that unless one has pancreatic cancer that has spread to other organs the NHS will not fund chemo?

 

Thank you

TO

 

[LisaC]

That seems strange for them to say that. 
 

I can only think that the chemotherapy they are suggesting is not available on the nhs for the stage that your mum is and could be sourced privately, as unfortunately people have to fit into criteria to receive certain treatments. They will be looking at her age, frailty, and things like that. 
 

The chemotherapy the drs wanted to give my fiancé was a combination of 3 different ones and sounded particularly brutal. 

[PCUK Ellie]

Hi @TeniOla - thanks for posting. It's good to hear you're planning to speak to the oncologist again to get some more information on why you've been told this. Appointments can fly by and it's not easy to remember to ask everything at the time, so hopefully they'll be able to answer your questions when you next speak. It sounds like it could be GemCap (gemcitabine with capecitabine) - we have more information about the different chemotherapy drugs used in inoperable pancreatic cancer on our website. 

 

Decisions about which/whether chemotherapy will be offered are based on a number of factors, as @LisaC has mentioned. I'm afraid it's hard to give a general answer as treatment options are so individual, but the specialist nurses on our free Support Line will be happy to talk to you about your mother's case and answer any questions you might have. You can give them a call on 0808 801 0707, or send them an email and they'll get back to you within 24 hours. 

We're also running an online support session on Managing Chemotherapy tomorrow at 11am, which you're very welcome to join. You can find out more about this and book here: www.pancreaticcancer.org.uk/support-for-you/living-with-pancreatic-cancer-support-sessions/managing-chemotherapy 

 

I'm glad you've found this community - please keep us posted if you'd like to and don't hesitate to reach out for support. 

[TLC]

Hello @TeniOla

 

My husband is over 80 and inoperable too. Our oncologist told us a year ago that he could only have the following treatments:

- Gemcitabine on its own (on the NHS)

- Gemcitabine + Abraxane but because he is not Stage 4 (Stage 4 is when there are metastases), the NHS will not pay for the Abraxane (so Gemcitabine + Abraxane is available on the NHS only for Stage 4 cases).

 

I don't know if it's still the case now, but the above might be useful.

 

The oncologist said Folfirinox (the most aggressive and effective treatment from what I gather) is not suitable for people over 80 as it causes too many debilitating side effects.

 

My husband decided to go for Gemcitabine alone and it's worked well. The only side-effect he suffered was fatigue. The treatment helped a lot with symptoms, in particular the pain, it just disappeared. A year on, after 5 months of chemo and SABR radiotherapy, he is still with us, although tired and feeling tummy discomfort.

 

I hope your mum has been able to start her treatment and that she is doing well.

 

My best wishes to you. It's a difficult journey but take 1 day at a time and don't lose hope!