experimental or tried and tested chemo

[sue2428]

my husband has had 9 keytruda treatments unfortunatley the tumour has grown also new nodules in the plura, his oncolagist had now refered him to the christie to the

experimental cancer medical team, the worry we have got is in the title (experimental )

we appreciate that this is how new treatments are found ,but dont want him to go down this route ,his oncolagist told us that if he dident have the trial or wasent suitable ,that he could have chemo, i just want whats the best for my husband feeling pretty confused at the momment and we are thinking why try something that hasent been tested on humans when he could have tried and tested chemo. dont know if any one else out there has come up against this but would appreciate any views, my husband was diagnosed in july 2016 adenocarcinoma stage 4 apart from sore knees due to the keytruda ,and gettig short of breath if he pushes himselfe too far he is doing really well ,thanks in advance

[Surviventhrive]

Hello. I was diagnosed in 2012 with stage 4 NSLC, adenocarcinoma. I got traditional chemo at first. It was very difficult for me. Very. And, it didn't work. So, my doctor told mei could go on docetaxel or get into a clinical trial.

I chose the clinical trial. I didn't expect it to help me, but thought i could help future people getting my diagnosis. Surprise, surprise. It has kept me alive for nearly 5 years. I was given the drug Opdivo (nivolumab) while it was in trial.

There are some things you might not know. Trials come in 3 phases (at least). My trial was Phase 3, it was close to FDA approval. Phase 1 trials are the ones you are referencing that may not have been tried on humans yet.

If you join the trial and it doesn't work or there is any reason at all that you want out, get out. No problem. There are NO negative ramifications for quitting a trial.

While you are in the trial, you will be monitored very closely by a skilled oncologist and a researcher. They will be very interested in everything about you and your health.

You get the benefit of the latest science has to offer. And, the oncologists involved in trials are interested in continuing to learn always. They know what is going on in the field.

I am not in a trial right now, but i wouldn't hesitate to get back in one if i am ever eligible again.

Good luck to you and your hubby.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Sue2428

Sorry to hear about your Husband's new nodules in the pleura. There has been an excellent response from Survieandthrive, and encouraging that this has been a good experience for them. It is understandable that you are concerned about it being 'experimental' , but all clinical trials are bound by a strict code of Ethics, and robustly checked for the safety of the individual.

The phase 1 clinical trials are with healthy volunteers to observe use and side effects of the medication. With Clinical trials phase 2-4, some of the trial medication may already have a licence and a medication name, and because of good results they do further trials on this.

You would have been given a patient and information form about the trial, which would tell you the phase of the study and the drug name. (Some drugs only display letters and numbers before they are licensed for prescription use) All the information on the trial will be in this document with contact details that you can speak to the trial staff. All participants are very well looked after, great attention to detail and reviews by specialised doctors and staff.

It is voluntary at every stage and it will not affect your husband's care if you decide to withdraw at any time. Ask many questions to the clinical trial team so you can so you feel well informed on whatever you and your husband choose to do.

There should be no pressure from anyone to participate.

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

All the very best

The Roy Castle Support Team

[JanetteR57]

Sorry to read your post and know it can be a frightening time not helped by the language and words used that seems to mean different things to patients/general public and the clinical research community.

The responses you've received hopefully help. We all have to be thankful that the experimental cancer medicine centres exist and that so many people are willing to take part in very well regulated and monitored clinical trials, without them, we would not have the treatments we have today for lung cancer (and other conditions).

My dad took part in a clinical trial for surgery 28 years ago and did very well and another follow on trial for his bowel cancer a couple of years later.

I've met many patients who've benefited from clinical trials treatments who've survived much longer than originally suggested and there have been so many advancements in understanding of lung cancers (it isn't just one disease) so it's really important that your husband's clinicians will be dealing with the exact biology of his tumour, his overall health and fitness to offer you the best options available to choose from. You may find these links helpful cancerresearchuk.org/about-... and roycastle.org/how-we-help/l...

Good luck.