Hi I also have melanoma, have been told to expect 2 year limit, have appr today to find out...

Hi mine was up 2 years aug, gutted as was doing great on it all stable. I don't understand why we can carry on with it. If it works why not carry on. Not sure if it's because it can damage other parks of the body. But like you would like to find out more. 

We are in the same position. Back in 2015 my mum was diagnosed with stage 4 lung cancer and went onto have chemotherapy.  Unfortunately this didnt work as well as hoped but her oncologist then put her forward for an immunotherapy trial.  This worked amazingly and shrunk her tumours by 80% very quickly, it did however cause her to have quite bad arthritis in her joints after about a year so she was taken off it after 18 months.  She has had a healthy 4 years since then, but unfortunately it has now spread to her liver, pelvis and by the sound of it today, her eye too.  Chemotherapy hasnt yet shrunk the tumours, as it didn't last time, and she has already asked if there was any chance at all of being able to access immunotherapy again but has been told no as you can only be funded for it once.  However, her argument is that as she only received 18 months worth of the 2 year treatment, she should be entitled to the other 6 months.  Immunotherapy was the only thing that worked for her before and it did most of the shrinking in the first few months so surely she should be allowed 6 months of it to see if it would help.  Seems very unfair and as you said, unethical to stop people accessing treatment that could really help them

I hope your partner is still doing well and keeping happy and healthy x

wish me and my man werny in scotland either stopping his treatment soon and am so worried how he will be after it

Hi Dan,

my Mum has been diagnosed with stage 4 lung cancer also and on immunotherapy. I didn't realises the 2 year plan was due to funding. Can you help us also?

Thanks 

Hi Maurice

Just wondering how you are doing?

Hope you are still fine

J

Hi, I hope you've had some better news by now!  I am going to be in the same situation in August.  Can you give me any advise on how to enquire about getting it extended.  I was told my treatment would only be for a year.  Diagnosed with nsclc stage 4.  I had radiotherapy for a couple of months then went onto immunotherapy.  I have no side effects and no progression of the tumour - it has shrunk.  Hearing that this may be a funding matter makes me feel very empty re any thoughts of where I go from here!

Hope you've had some good news xx

Hi are you saying that you've been in immunotherapy beyond the two year limit? Thankyou 

Good morning Esperanza

Unfortunately I didn't have any luck progressing with this as my Mum's cancer had spread.  I did however have conversations with my mum's consultant before this time about Individual Funding Requests and any other options.  He still seems to think that it wouldn't be agreed unless there were really exceptional circumstances.  The NHS will fund this for up to 2 years or until extreme toxicity means you have to stop treatment.  If you have only had immunotherapy for a year and it is working you should definitely speak with your consultant about extending this for the full term.  Beyond that seems very unlikely at the moment as 2 different consultants have said that they havn't known the NHS to extend this, however when that time comes I would definitely still do your research and discuss an Individual Funding Review if you feel further treatment is needed.  A lot of information can be found on the NICE website and Roy Castle Lung Foundation.  I also contacted a couple of the big Cancer centres in the country to see if they had had any experience in patients accessing further treatment but unfortunately I didn't hear back in time, however, you could still ask the questions again.  A lot of the information I read states that trials suggest that 2 years of treatment is sufficient. I don't understand how ethically someone can put a number on what they think is a sufficient amount of time to extend a person's life if treatment is working.

My only advice is do some research and ask the questions.  You could also ask if there are any immunotherapy trials you could access, although eligibility for this might not include patients that have already had immunotherapy.

Fingers crossed you get the full 2 years and by which time the NHS have changed their rules on it.

I'm not sure if I have any other information from my research, but happy to dig it out and have a look if you would like, but at the moment the rules seem to be very clear. :0(