Hi,

I'm so pleased to hear that your friend is responding so well to the immunotherapy - these treatments really are life changing.

We have been directly in touch with our local MP who has already requested a response from NICE. Last week we got the NICE reply which unfortunately wasn't very positive however it did include the paragraph below;

"I should point out that pembrolizumab could still be made available on an exceptional basis. NICE does not have any role in reviewing individual cases or granting special case exceptions. Instead, the patient should speak with his doctor to discuss whether extended treatment for a longer time period could be a clinically appropriate option for them, given their own unique circumstances. The doctor will be in the best position to decide whether to continue to press for access to continued treatment, via the individual funding request (IFR) route. NHS England oversees the IFR process and further details about it can be found on the NHS websitewww.england.nhs.uk/.../ "

The radiotherapy my partner received during lockdown worked well and he has had 2 subsequent stable disease scan results however we are now going to contact his doctor to start the ball rolling with applying for an IFR. It might be worth your friend doing this as well in readiness for when their funding comes to an end.

I'm so sorry I can't be any more help.

Best wishes to you and your friend for a veyr happy (although a bit different!) christmas.

Hi Cath

Thank you so much for this information - it is so helpful and we will absolutely follow the IFR route.

Emma

Hi I have just stumbled across this post. 

My partner is 16 months into his immunotherapy treatment, this has never been mentioned. How can they withhold this information? He is only 37 years old and treatment is working. Please keep me informed if any one is able to stay on immunotherapy over the two years. 

Many thanks

Cheryl

Hi, 

I hope and your wife are well.

My partner is 16 months into immunotherapy treatment and we have never been told this from any of his doctors/nurses. This has been understandably frightening to hear as he's only 35yrs old he hadn't had a full life. Can you tell me if your wife was able to get her immunotherapy extended? And if so how you went about it? 

Many thanks 

Hi everyone,

Just wondering if this thread is still active? We're coming to the end of our allocated 2 years too. We discussed IPFR with consultant who said as a team they don't put these forward for their patients. They said we could get a second opinion from somewhere else. Just wondering if it's worth trying to pursue a second opinion? Has anyone been put forward for IPFR and been successful? Don't want to waste precious time chasing something that's not possible.

Thanks

Hi GuinneaPig, sorry I have no response to my post and have been made aware as my partner's cancer is melanoma that the two year limit does not apply. I think this may be due to this treatment being created for this type of cancer specifically. 

I hope you get the help you need. Please keep us updated.

Cheryl 

Thanks for replying - I did wonder if the thread was dormant as lots of replies seem to be older. I have read melanoma is approved for use for longer. That's great news and hopefully means this may be the case for other cancers in the future. 

Wishing you and your partner all the best x 

Hi Catkin6 and GuineaPig,

so sorry for not replying to your earlier messages - I'm really pleased that for melanoma the immunotherapy is continued beyond the 2 years - let's hope this follows for other cancers in the future.

My partner is currently awaiting results from a recent scan so as I'm sure you can imagine a worrying time. I was feeling very hopeful about the IFR route for more immunotherapy so it's disappointing to hear that you have not had a positive response. We have recently had a report from Lord Bethell with regards to our petition to increase funding and he finishes the report with,

Finally, on an individual basis, there may be a case where a clinician believes that their patient’s clinical situation is so different to other patients with the same condition that they should have their treatment paid for when other patients would not. In such cases, NHS clinicians can ask NHS England and NHS Improvement (NHSE&I), on behalf of a patient, to fund a treatment which would not usually be provided by NHSE&I for that patient. This request is called an Individual Funding Request (IFR). As I have mentioned, the request must come from a healthcare professional directly involved in the care of the patient. This should be the most senior clinician responsible for the care of the patient usually at consultant level and should be the clinician with responsibility for delivering the proposed treatment.

I definitely think it would be worth a second opinion.

So sorry I can't be any more help.

Wishing you all the best

Cath

Thanks Cath

Fingers crossed you get the response you're hoping for from your IFR request.

Having spoken to our consultant, it is that 'exceptionality' clause that they are questioning. They are saying that it is now not unusual for lung cancer patients to be doing well at 2 years and so there is nothing 'exceptional' about our case. This does seem crazy to me because I think if there is now growing evidence of a good response at 2 years for so many people, why are they not reviewing the evidence and seeking to extend for all those who continue to benefit in the absence of significant side effects?

If you would keep us posted regarding the decision of the IFR panel that would be really useful please as might help us with evidence that other teams are having success in this area.

Thanks again for your reply x