Ending Nivolumab

[foodbankcupar]

I have almost completed my two year allocation of Nivolumab treatment.

Is there anyone who is now being treated with Nivolumab for a third year?

I am to see my consultant in six weeks to ask if their is a chance of an extension.

It has successfully contained the growth of my lung tumour and also in my neck

Lymph nodes.

Regards

Kevin

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear foodbankcupar

It is great that you have had such a good result from Nivolumab and sorry it has not been extended beyond the two year licence use, this is due to no research evidence being available, for use beyond the two years. It is understandably frustrating and disappointing for people who have been on this not to have the option to continue.

We recognise patients who are coming towards the end of their two-year immunotherapy treatment period may feel anxious about their future.

Immunotherapies are still a new way to treat lung cancer and the data about them is still growing. However, current evidence suggests that stopping immunotherapy after two years does not stop the patient’s response to it. This is because the immune system becomes re-programmed to better recognise cancer cells. We have seen this when speaking to patients who have completed their course of immunotherapy and continue to enjoy life after their treatment has ended.

As more information becomes available, we will continue to speak out for people with lung cancer to ensure they receive the best treatment and continue to live well with lung cancer.

If you wish to discuss anything you can call us on our Freephone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

[Hidden]

I started Nivolumab in late 2017. It has worked well to control the primary tumour, though I have had growth of upper chest lymph node mets, now treated with radiotherapy. My Oncologist has recommended stopping now. Two reasons. Firstly, I have had recurring colitis as an unpleasant side effect. More interestingly, the Oncologist is trying to keep up with data analysis that may indicate that after a year or so, additional immunotherapy may not be adding any additional benefit. Your own immune system may have learnt from the drug how to handle the cancer cells. It is not proven, but the trade off between uncertain future benefits against certain uncomfortable side effects made our decision.

[foodbankcupar in reply to Hidden]

Interesting opinion, I am fortunate in having no side affects from treatment, only triedness for a couple of days.

I assume you will be well monitored to see cancer has no progression.

Kevin

[Sam555]

Hi,

I was on the immunotherapy drug pembrolizumab for 2 years which ended in January this year. I begged, pleaded, cried, wrote to MPs and was in newspapers and on the radio trying to get the treatment extended. Unfortunately nothing came of it and I am now in limbo. I’m not on any treatment at the moment. The cancer is still there and I won’t get any more treatment until the cancer starts growing again.

Good luck.x

[foodbankcupar in reply to Sam555]

I assume you have regular CT scans to monitor the cancer?

[Sam555 in reply to foodbankcupar]

Yes, three monthly scans with xrays in between if I’m worried about anything.x

[foodbankcupar in reply to Sam555]

It would seem that your immune system is then to carry on containing the cancer.

[Sam555 in reply to foodbankcupar]

True, the worry is how long for. No one seems to be able to say. X