New to the group

Hi , welcome along yes, this group is for anyone affected by melanoma the patients, carers, friends and family. There is also another group for carers only, any cancer, just to exchange perhaps experiences of how awkward things can be, I will put that link in so you can have a look. https://community.macmillan.org.uk/cancer_experiences/carers_only/discussions

I’m on the immunotherapy Pembrolizumab at the moment but currently clear, my story started in 2015 no primary straight to metastatic, (my progress can be found by clicking on my user name for my profile) I know it’s not easy for the patient or their other half. You mentioned immunotherapy was about to start, when you had the standard scan so that they could measure progress of the immunotherapy, I was wondering if immunotherapy has started or been delayed until after the PET scan? I remember waiting for treatment to start was one of the hardest times. 

Best wishes

Hi KTatHome

The immunotherapy has been delayed until after the PET scan. If the scan shows multiple tumour sites we think they will recommend that the immunotherapy start asap, and on the other hand if it shows just the one tumour (assuming it is malignant) then an operation will be done to remove it, then the recovery period, then another PET scan and then the immunotherapy a couple of months from now.

When I work out how to use the site I'll see how to click on 9n to see your progress and see what the recommended protocols are etc.

Thanks for your reply and all my best wishes to you.

Just found your progress and now realised that 9n was a typo! Have to get ready for a meeting so have only skim read your progress ... best wishes

Hi

I had immunotherapy four years ago. It was Ipi on it's own as the Ipi/Nivo combination was not available then.

I just thought you would like to know that immunotherapy worked for me, even though I had a 5 cm tumour and  2.5 cm tumour at the time. I have been NED (No Evidence of Disease) for three and a half years.

I know that not everyone is as lucky as me with their response but Ipi/Nivo does work for many people.

All the best

Thanks Moira, that's good news story! David

Hi , yes 9n was indeed a typo!!  I’ve gone back in and corrected it now !! 

Like Moira, I’m currently no measurable disease but I had a different immunotherapy drug to Moira. When I had surgery to remove a lymph node that was resistant to Pembrolizumab they did mention that there was current thinking that immunotherapy after surgery can give the body a kick start again to get the bodies immune system working. So I’m hoping which ever way round that your wife has her treatment that it works as well for her as it has for me.