My partner was diagnosed with stage 4 nsclc in October 2015. After unsuccessful treatment with chemotherapy she was referred to palliative care by her previous consultant. I went private to get a second opinion and found a great consultant who enrolled her on a early access to medicine scheme for immunotherapy (nivolumab) . She had 2 years on this scheme and responded amazingly with a considerable reduction in her primary lung tumour and brain metastasis. After this she received her treatment directly through nhs funding and nearly 2 years later she is disease stable and feeling healthy and well. At a recent consultation we were Informed that immunotherapy is only available for 2 years on the nhs no matter how well the patient responds to treatment. We were shocked to hear this as we were under the impression as long as my partner was responding to treatment it would be continued. But more shocking than this we discovered that even if her cancer was to progress once her treatment stopped, she would not be eligible for any further immunotherapy on the nhs, even though it has worked for her in the past. I find nhs policy on this matter absolutely crazy. That's why I am reaching out on this forum now to try to contact any patients in the same position to swap ideas with each other and get a movement going to try to change this policy. I look forward to your responses.
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Dl1977
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Hi Dl1977 I finished my 2 years in may gone, I was a first liner (no chemo) fo stage 4 nsclc. Was on keytruda imunatherapy als stable there was a petition raised about 18 months ago on Macmillan site. Also had Article in Daily Mail hope your partner remains stable good luck Clem1
My brother is the techie in the family, and is currently starting a Facebook page on this issue, I will send you a link when it's up and running. Glad to hear your doing well. My partners consultant is happy to keep her on nivolumab, but saying there is no funding. And as I said, they say she cannot have any more immunotherapy even if she progresses, how can this be? Surely something that has worked in the past is where you would go first? People don't have time in this situation to be playing russian roulette with clinical trials, and chemo, that didn't work before. Just out of interest what are your treatment options in the future, if you don't mind me asking? Also recently they have removed this 2 year policy from melanoma patients receiving immunotherapy, as it has been so successful. Only a matter of time before they do the same for nsclc, but unfortunately some people don't have that time and need treatment now. Think we need to start putting pressure on nhs England to change this policy. Sorry for the rant!!!
I am immunotherapy only which is working really well, up to 18 infusion. I am dreading the 2 year point (if I tolerate it). On a positive I belong to a fb group of lung cancer people from all over and many are still stable and NED years after stopping.
In some states in US they just carry on way beyond our 2 years. I’ve read everything I can find on this and like you very disappointed that if cancer progresses we cannot go back to immunotherapy. Wishing all the luck in the world for continued stability xxx
Hello DI1977. I am due to have my last Keytruda/pembroluzumab infusion on 11 December, when I will have completed two years on immunotherapy. It has kept my disease stable. For me it is a second line treatment as had chemo previously. I have stage 4 nsclc with bone mets. My oncologist explained that 2 years was determined by NICE as the optimum period for immunotherapy and at that point the killer T cells have been ‘reprogrammed’ to fight themselves. In fact there is some evidence that this may be the case after one year. He also explained that as this is a relatively new treatment the longer term risks aren’t yet established but could well include autoimmune diseases. However your partner has obviously done very well having 4 years on immunotherapy. The plan for me is watch and wait then when there is disease progression re-biopsy to ascertain whether I carry any of the newer mutations that have been identified since I had my last biopsy, which would make me a candidate for targeted therapy. Failing that, it seems the only option would be a clinical trial, if available. He said that when there is disease progression it will mean that the immunotherapy is no longer working hence further immunotherapy wouldn’t help. It does seems strange though that the same logic isn’t being applied to melanoma. I am quite concerned about discontinuing the treatment and understand that, although the petition was unsuccessful, there was to be a review of the timescale this year, which doesn’t appear to have happened. For your partner and myself it seems likely such review may come too late. I don’t use Facebook at present but certainly would if your brother sets up a Facebook page re this.
Thank you, just spoke to my brother now, and said he will have Facebook page up and running today hopefully I will send you a link as soon as I have it. Her consultant has told her the same,......We don't know what happens after 4years. Well what's happened is that she is stable and feeling well, and showing no ill effects from immunotherapy. Surely the only way to see the long term health effects of continued use is to keep patients on it for longer! It's down to money and funding and her consultant has told me as much, as he has said if he had funding he would continue treatment. Surely these things have to be looked at individually, some people will always perform better than others, but it should always be available if needed. Can understand how you must feel, my partner is very anxious about finishing treatment, hope you stay well and will let you know about fb group!
There is growing evidence(see link below) that patients may not need to be treated with immunotherapies indefinitely, or even for as long as the two years commonly studied in clinical trials. It has been identified by some researchers involved in clinical trials that most people have their response by six months, and certainly by 12 months they've stabilized whatever response they've had".
It has also been suggested that, shorter courses of treatment may be just as effective and provide an option for retreatment should a patient progress after coming off a defined period of therapy, speakers said at the meeting sponsored by FDA and the American Association for Cancer Research (AACR).
In adition, some researchers also suggest that although treatment with immunotherapy may stop for example after two years, immunotherapy treatment changes the genes in a person’s white blood cells, the T cells are re programmed to help them recognise and kill cancer cells so in effect continues working beyond the two years
Because they knew if they had not extended it for melanoma with the results it was having, there would've been cancer patients camping outside hospitals demanding it! I predict the same for lung cancer patients soon, just seem they want to pinch the purse strings for as long as they can, before they have to admit how effective it is for nsclc as well!
It was really strange with melanoma. They did get it indefinitely for a long time, then a year or so ago, they said no to get getting it indefinitely, then they changed it back again. X
I didn’t but my oncologist did. I also enquired about funding it myself but at £5,000 a treatment it was impossible. I knew I wouldn’t be able to afford it but just wanted proof that there was no clinical reason to not have it for more than 2 years.x
And here's where I have a big problem. My partner has been receiving it for nearly 4 years now, so they cannot fob me off with the stuff about toxicity and reaching its full potential after 2 years, if that was the case why is my partner still receiving it? Only reason is financial, the first 2 years were paid for by Bristol Myers Squibb. As you said, I bet if you could fund it privately, there would be no talk of 2year limits. Obviously if you suffer from melanoma you don't suffer any serious side effects!
The worst thing is, we were completely unaware of the 2 year limit when treatment started. If I had known then I would've started to research a way to get continued funding a lot earlier. X
I was aware of the 2 year rule but it seemed such a long time compared with the few months you get with chemo or radiotherapy. On top of that there was no way to know if it would work or if the side effects would be to toxic to cope with. It was a lifeline that was worth grabbing and if you didn’t agree to the 2 years you wouldn’t have got it all.
It’s definitely a funding issue and the reason we get it for 2 years is the agreement that was made between the nhs and the drug company to supply the drugs at a reduced rate for the 2 years. X
Hi. I can understand where you’re coming from completely. I found my self in this position in January. About 6 months prior to my treatment stopping I did everything I could to get the treatment extended. Along with a fellow pembro user a petition was set up and we got the 10,000 signatures required by parliament to look into the situation. The response from government was negative. On top of that I was on bbc radio 5 live with an oncology professor highlighting the situation. I was in the Sunday papers my local paper and 2 other radio stations. At the end of the day it didn’t get approved.
I think I have seen one of the news paper articles you are talking about.
I know it's a long shot, but if we can get enough people talking about this, maybe even get a demonstration organised, eventually someone will have to take notice. How are you doing at the moment?
I don’t wish to sound negative but I don’t hold out much hope. The last correspondence I had from department of health said they wouldn’t respond to any more correspondence from me. They will just file everything now, I don’t even get an acknowledgement. I’ve spoken to Merck, NHS England, NICE, a private oncology professor, my MP, my onc fought for it and still I’m left without treatment. As I said the petition had over 10,000 signatures but still the NHS was unable to extend it.
Fortunately, I’m still stable after 10 months without treatment. I really can’t complain about the treatment I have had. It all worked to some degree and considering I was diagnosed terminal with 12 to 18 months back in 2013 I consider myself extremely fortunate.x
Good to know you're doing okay. I know the benefits of immunotherapy go on after the treatment has ended, but I really cannot believe the nhs will not let patients try it again if they progress. Would have no problem if my partner was taken off it or reduced for a while if it was a clinical desicion, and there was the option of restarting but there isn't. My partner feels the same, she was given 3 months in 2016, and is grateful to still be here, and she gets fantastic treatment by everyone involved, just sad people like yourself and my partner are having to fight for treatment, it's not like you haven't endured enough. X
I’ve been told I’ll have more chemo when the tumours start growing. I can’t say I’m looking forward to that. I’d really like to know how much the chemo costs along with all the other drugs you’re given to combat the side effects. I was hospitalised during chemo for a transfusion, I was to unwell to go to my gp practise for my bloods so the district nurses had to come to me, occupational health had to give me aids to help with my mobility due to the side effects and because of the long term side effects of chemo and radiotherapy I’m now on medication for life. My bones were affected by chemo so I need constant help with mobility which means I get full payment of PIP. Surely in comparison it would be more cost effective to give me immunotherapy which has only left me with fatigue. X
It's ridiculous. If you start reading the nhs constitution it will make you sick, it's all about how the patient benefits is at the forefront of everything they do...etc..etc...etc. probably is cheaper to give people cut price chemo for 6months then send them home on palliative care, than it is to maintain them for years on stuff that actually works. To me it's disgusting, not everyone is like yourself and others and do all that can to get what's rightfully there's. Must be so many people who don't have the energy or support to look into things properly, and just accept that their treatment is finished.
And even when you do put up a fight, they still won't budge.
I agree with your sentiments entirely. Cancer and it’s treatment is so debilitating that most people don’t have the energy to fight. Then the likes of us are so few that there isn’t enough of us to make an impact. Then when you do fight you eventually have to stop because you need your energy to fight the disease and enjoy time with your family. For me, whilst I was trying to fight I was losing precious time with my hubby and two daughters. It completely took over my life because hitting your head against a brick wall is all consuming.
Please let me know if you pursue this matter and if I can help you in any way.x
Thank you, I understand what you mean. My partner is a lot more accepting of decisions about her treatment than me. It's hard for her to do all the research and contact people, I think when she's feeling well she just likes to forget all about cancer and spend time with family and friends. She is remarkably well though, she works full time, in a nhs rehabilitation hospital would you believe. And she is so grateful to have received any immunotherapy at all, she was literally sent home on palliative care, had a hospital bed in living room. She even feels like we are betraying her consultant in a way, by me questioning what he tells us, even though i know his hands are tied. It's been nice talking to you, and if I find anything that may help you I will pass it on. Hopefully I will see you when we are demonstrating outside downing street!😁
Hi Sam555 my husband was given pembro in November 2016 before it was approved by NICE in December 2016, unfortunately for him it was administered whilst suffering from a chest infection which led to severe consequences so he wasn’t allowed a second dose. Sadly he passed away in 2017. I remember having a conversation with a nurse whilst he was receiving his infusion who informed me that pembro was far less expensive than chemo and at the time she did gave me the costings but unfortunately I can’t remember them.
I was looking at the Merck website and then on to the trials page clinical trials.gov - and the are currently enlisting: Long-term Safety and Efficacy for Participants with Advanced tumours currently on treatment or in a follow up in Pembrolizumab (Mk 3475) study. There are UK hospitals taking part. May be worth looking at? identifier no. NCT03486873
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