Hi

my partner is in a similar situation. His immunotherapy 2 year limit ended in January 2020. Sadly his cancer has already returned which meant radiotherapy during lockdown. We are looking into ways of continuing immunotherapy beyond the 2 year limit. 
It does seem unethical and a terrible situation for cancer patients to be put in. 
If you'd like to message outside the forum add as a friend. 

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 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

My husband is 13 months in on immunotherapy and has been told another 11 months.  It seems it's all down to financial reasons and like others his response has been amazing after nearly being wiped out after chemotherapy.  So let's keep this thread going and see what collective action can achieve.  After all the money spent on covid 19 we should be able to have unlimited treatment.  Let's go for it via forums and collaboration with MPs.  We'll done.  Carol 

Hi, agree with you 100%. Please keep me in the loop regarding this. It's like someone has just pulled the rug from under me as I've been so good on this treatment , now I dread every day that passes as it takes me nearer to the 2 year limit.

Hi,

so sorry to hear you are all in a similar predicament but pleased that you are responding well to the immunotherapy. 

This feels like such an important issue and the situation patients are being put in is so shocking and needs to be changed. The petition we submitted last year sadly hasn't changed anything but we are still thinking about other ways to help.

thanks and take care

I can provide some evidence supporting the idea that the two-year limit is purely financial, not at all clinical.

My condition is brain metastatis (resected) spread from primary lung tumour. I'm on immunotherapy after testing VERY suitable. After two years the brain scans still showed a sliver of enhancement and the lung continued to demonstrate very low level FDG uptake. Basically I was good but not absolutely cured - stable, very lucky indeed, close but no cigar.

Here's where the money comes in: I'm on private health insurance. So what has happened when finance wasn't an issue is that the Pembrolizumab infusions continued. I've been on it for over three years now, still stable, feeling good with minimal side effects but no "all clear".

My thinking is that there are probably two factors in play here. One is that the doctors and hospitals are overwhelmed with the Covid thing, so if they can keep a patient on a holding pattern for the forseeable then they'll do just that until things ease up. The other is that taking an alternative approach (before the pandemic there was some discussion going on about using cyberknife radiotherapy to zap my ambiguous areas once and for all) now comes with additional Covid risks, which would be better avoided if there's a choice.

So that's what actually happens when there isn't a two-year paywall.

Kindest wishes to all
SteveP

I am at the start of my immunotherapy journey but have been worried about it being stopped since I was told about the 2 year limit by my consultant. I believe cost must be the main factor as I was also told it costs £5,,000 per treatment or ££120,000 for the 2 years. If you have private medical insurance you ae able to continue with the treatment for as long as it works. Naievely I always thought that when it came to life saving treatment  the NHS would offer the same  help, perhaps not in such luxurious surroundings but it would be there. But I was wrong.

I would be so grateful for any information that might help me when my 2 years is up. Also I am sure I read somewhere about a campaign to have treatment extended beyond this period for lung cancer but I have not been able to find out any more information about it. Please let me know. I feel so impotent just waiting for my time to run out. 

Thank you and my very best wishes to you all.

Just as a matter of interest,  are there any  members on here that have gone on with or without treatment  after the 2 yr period? Does anyone have any advice for the rest of us? Thanks.

Just as a matter of interest,  are there any  members on here that have gone on with or without treatment  after the 2 yr period? Does anyone have any advice for the rest of us? Thanks.

I was on a clinical trial and had immunotherapy for two years for stage 3 nsclc with pembrolizumab finishing in November 2018. I lost about 75% of my tumour. However, I was not allowed to receive further cycles even though it was s a condition of participating in the trial as they did not believe I would benefit from further cycles. My reaction was, while clinically plausible there was no data to support that belief but I was refused further treatment.

The short answer, is that nobody knows what the optimum number of cycles are, but  Merck the manufacturer 'recommend' stopping after 24 cycles whereas the precription licence allows for continued use until disease progression while tolerated.

The 24 month maximum is about making it a cost effective treatment for the NHS and for the manufacturer to market it on that basis in my opinion.

I explored all the avenues for further treatment and even the NHS rule it out even though I never had any cyles from them in the first place. The only option for me would be privately, which would be in the region of $10,000 an infusion. Luckily, I'm still feeling normal, although no scan for 18 months due to covid -19 but if it becomes active again that's what I am looking at.

Incidentally, Merck still have patients on their original clinical trial receiving infusions 8 years later.

Hi Maurice

Just wondering how you are doing?

Hope you are still fine

J

Yes, I am still doing fine thank you  and good luck to everyone here.