There are many people on here worried about what happens when they or their loved ones 2 years are up with their immunotherapy treatment. I was the same. My mum was put on this when chemotherapy didnt work on her stage 4 NSCLC and it amazingly shrunk her cancer by 80% in just a few months. When it spread a few years later and once again Chemo didnt work, the rules around Immunotherapy would not allow her to re-access it even though this was the only treatment that worked. She hadn't even had her full 2 years worth of treatment as it was stopped early but she still wasnt allowed to re access it. In other countries this is available for longer and if you go privately you can have it for as long as you can afford it. Lives are being lost because the funding isn't available to offer this treatment for longer than 2 years.
Please sign and share this petition to urge the government to look at increasing NHS funding to allow Immunotherapy to be offered for longer than 2 years and to be able to re access it if needed.
I am sorry to see from your post that your mum had such a difficult time on treatment. Appreciate your desire to improve the experience and options for others.
We would like to point out that the licensing and evidence for the use of immunotherapy in lung cancer has determined the availability and time limit, rather than a financial motivation.
Immunotherapy is an innovative and developing research field. At present licensed immunotherapy products for lung cancer work on the same mechanism and there is no research evidence of benefit by rechallenging the tumour with the same or a different immunotherapy treatment after the first round.
There is a need to balance the treatment dosage and timescale with the potential side effects and toxicity of the treatment on the immune system. This is done on a case by case basis and clinicians will work hard to deliver the best care possible to help a patient manage if their lung cancer progresses.
We know this can be a difficult and complicated area for those affected. Options and how these are communicated can be limited and disappointing. Our new immunotherapy booklet does explain a bit more about acquired immune response on page 25.
We are campaigning for ongoing research and improvements in treatment pathways. If you want to discuss your mum’s experience and treatment options please do contact our Ask the Nurse service.
Thank you Lorraine for taking the time to reply. I do appreciate that everyone's case is very individual and cells will often change and mutate meaning that immunotherapy may not be as effective as the first dose but to have the option to re-access would be beneficial. If it is available through other pathways there must be benefits in longer treatment for some. My mums consultant said himself, funding played a very large part of the decision because it is an expensive medicine. I just think if there are not anymore treatment options for someone, they should be able to try immunotherapy again if tests show theres a possibility it could be effective.I will take a look at your leaflet thank you.
Here in the US as far as I know only Keytruda has the 2 year limit. Also if you have progression on one type of immunotherapy you cannot go back on it. BUT, you can go on another one with a different pathway. I took Opdivo (pdl-1) (nivolumab) for 4 1/2 years until progression occurred. I then was switched to Tenentriq (pd-L1) and stayed stable for a year so asked for a break. I remained stable for over a year! I returned to Tencentriq this past March and it appears to be working again.
so pleased you were able to go onto the lung matrix trial - such a ground breaking trial over many years... although your side effects sound bad - despite 2 clear scans. how are you now?
Lung cancer fine awaiting results of scan. Now just had four weeks of radiotherapy for prostate cancer and having side effects. Won't know results until blood tests late July.
A previous petition was done in September 2020 which I took part in and we wrote our MPs - NICE included the review with Nivolumab and published outcome in October 2020 - no change to 2 year limit. There was a f book group set up at the time Immunotherapy U.K. Policy Campaign but not gone any further. I have noticed from other fb groups though that many people in US are now saying it is being stopped at 2 years.
The time period of immunotherapy as far as I understand from various conferences I've attended, talks/lectures and papers is based on clinical evidence that the body's immune response kicks in and responds beyond the active treatment period. It's often easy to believe that treatments have a finite limit due to funding restrictions - having worked in clinical commissioning for 15 years I know many patients believed all sorts of things about how GP practice budgets were calculated or treatments rationed which weren't always the case.
Many cancer treatments and those for other conditions cost a fortune but it's based on best evidence of what works, clinical guidelines put together by various experts when the treatment is licensed. If new findings come to light, those guidelines are often reviewed. More new treatments have been introduced for lung cancer in the last few years than the previous decade but not everyone is clinically eligible for immunotherapy.
The pandemic saw several changes to treatment to enable access for some who previously wouldn't have had it to protect them from potentially developing covid whilst in hospital for chemotherapy or other treatments. If the decision was financial, that wouldn't have happened. That category of patient was never included in the clinical trial data nor the costings but the NHS modified what was permitted to ensure the best odds/safety/risk balance for patients during a global pandemic.
In some countries diagnostics, treatments and procedures can be bought even if not clinically necessary but UK healthcare is based on clinical need and availability/suitability based on individual patient needs.
Some patients who may benefit from it but are currently excluded as trials excluded them so it's important more research is undertaken especially as immunotherapy is a developing area for many cancers. However as people know if they have other immune related conditions, how one person responds can be very different from another so close monitoring for safety etc is essential.
Other targeted treatments have also been developed and other treatment types like radiotherapy, surgery and chemotherapy used with such agents are all being researched. What's important is that the treatment is most tailored to the patient and this has been seen in lung cancer treatment approaches in recent years and still being developed.
Thank you JanetteR57 for your reply, you are very informative. I'm not disputing that each patient needs an individual plan of treatment and what works for one may not work for another. I also appreciate how many new treatments have come about and are on offer as an alternative to Immunotherapy. It's amazing the changes that have happened in the past few years. However, if immunotherapy has worked positively for a patient in the past, and other treatments have been tried since then when the cancer has spread a while later, then there should be the opportunity to re-access immunotherapy. Our consultant also mentioned on several occasions that funding played a big part in the decision.I have read that the recommendation to stop treatment at 2 years, was based on the best available clinical evidence and the expectation was that patients would not need to continue treatment to achieve the long-term benefit. Clinical experts said that while the best duration of treatment with pembrolizumab is unknown, patient and clinical experts agreed that stopping treatment at 2 years independent of disease status would be acceptable to patients. From all the messages from concerned patients and their family on forums that I have read, none of them agree that this is "acceptable". My mum passed away after her cancer spread when the chemotherapy she had to try again instead of re-accessing Immunotherapy, didn't have any effect. I just think the option should be available to offer on an individual basis if required and if this isn't just down to funding then all aspects should be reconsidered. As we all agree, everyone is different and different treatments will work differently for each person, so why put a generic time limit on a treatment that is the same for everyone. If it is not down to funding then this doesn't make sense, especially as immunotherapy is still a relatively new treatment and therefore a lot is still being learned.
Thanks - you're right -tailoring, generic options and researchers and clinicians still learning so much about lung cancer - so far non small cell seems to respond to I/O in a different way compared to small cell or squamous types of non small cell. Nobody seems to know why yet.... but more studies underway globally. Many don't get two years I/O treatment due to side effects but if they have certain mutations they can access different targeted options usually.
The CNS who introduced me to cancer research and encouraged me to get involved herself an EGFR + patient, had Arissa and Tarceva in 2014 and 2015 when they were in their infancy. Like your mum she had a good response - after an initial 6 month projection - she survived 4 years and 4 months but both were only available through clinical trials so she travelled to Manchester and Birmingham to access them. Immunotherapy hadn't been tried at that stage for lung cancer so it is a different era .
Different trials are exploring different durations or order of when to intervene with what for how long. Trials using immunotherapy before surgery for lung cancer might be an option, for others it can be about when to use the most effective treatment. When I was diagnosed, the practice seemed to keep the 'best 'til last' - i.e. explore conventional treatments then introduce newer agents but often the patient was too weak from conventional chemo/radiotherapy for the newer agents - now more refined than then.
Another patient colleague was told - 'don't worry - the research area is so active that even if one agent stops working, by the time that happens another will have come along' -that was true for him too.
When trials elsewhere show promising results to international drug administrations they usually approve the new treatment if evidenced as superior than standard of care.
I remember news breaking at ESMO meeting I attended about the impressive impact of 'progression free survival' for duvurlumab in the pacific trial for NSCLC unprecedented at the time so standard of care changed within months of that conference - by many countries including the UK. Those specific trial results are regularly updated even now showing some being monitored in that trial where despite no further I/O after 2 years, the longer term impacts are very evident..... and now being trialled for small cell cancer in some trials.
When I was diagnosed less than 5% of all cancer research went on lung cancer despite its prevalence and outcomes compared to other types.
Much investment is currently being made in the UK on targeted lung health checks in a bid to bring forward earlier diagnosis for more treatment choice, often at lower cost than many advanced disease treatments but also likely to reduce side or late effects of treatment. Many countries are watching the UK's progress in this area with interest.
Meanwhile clinical trials continue so worth asking if any might apply orother novel treatment under compassionate use/cancer drugs fund approach for her.
Thankfully newer treatments introduced in the last few years of many different types were alongside changes in conventional treatments but there are still many for whom none work for long enough.
The promise immunotherapy has offered some lung cancer patients has led to an increase of interest for other cancer types but not many respond as well yet. Trials explore how an immune response can be triggered in the patient's body - I remember headlines decades ago about Interferon which went out of favour as something else came along ....
I had a form of immunotherapy (weekly injections for some years than a single injection in summer for 3 consecutive years than some years later more injections during winter for hay fever as a teenager/ young adult - told I had too many allergies to treat - as if my immune system was in 'overdrive'. I'm told I was immune to penicillin by the age of 4 after so many bouts of bronchitis as a toddler so do wonder if my developing immune system was damaged leading to the cells becoming mutated over time but guess I'll never know.
Those with autoimmune conditions are excluded from I/O and many patients are given steroids to deal with I/O side effects which suppress the immune system... it's way more complex than I understand.
We need researchers to keep ideas coming, pharmaceutical companies to develop the drugs and patients to try out these to help others in future.... then policy makers to negotiate fair prices with pharma to ensure research continues and treatments are affordable and effective in a universal healthcare system....
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