What to expect?

Hi Rich, and welcome to this Forum. 

I've been through a similar journey, albeit I'm now looking back on the completion of the treatment rather than just starting it (further details in my Profile).

My immunotherapy was intravenous (personally I'm not aware of the tablet option) and was easily tolerated, however I know some people do struggle.

Your oncologist will explain the treatment options and will run through the potential side effects. All I would say is, don't despair when you see the list of side effects - they are significant, however they are by no means guaranteed. I had a little fatigue and my skin is dryer than it used to be. The only long-term issue is that my adrenal glands have stopped working, which is serious, but is resolved with two small tablets per day - a small price to pay.

You'll get used to the scans and blood tests - I found them reassuring rather than a hindrance. 

One thing I'd advise - make sure you have the contact details of your appointed SCNS nurse - they provide a reliable interface between you and the clinical team, and specifically your oncologist. They really are invaluable. 

I'm now in remission and that is solely down to the clinical team and immunotherapy (and possibly some stubbornness from me....).

Good luck for the future - feel free to raise any queries you may have.

All the best. 

Hello Rich

It’s a worrying time with all the waiting in between appointments and the uncertainty as to what the future looks like so I really sympathise with how you are feeling.

I’m in a similar place to you although a little bit further along the treatment path. I had a melanoma removed in April along with 6 lymph nodes, two of which were found to contain cancer cells. MRI and CT scans showed no evidence of tumours elsewhere so this week (Wednesday) I am starting infusions of pembrolizumab which I will have once every six weeks for 12 months to boost my immune system and hopefully help to kill off any remaining cancer cells. I will need to have blood tests before each infusion to check blood cells and that my kidneys/liver are working ok.

The oncologist outlined the possible side effects which, although many, seem mostly mild (and reversible) apart from the possible impact on the thyroid. The infusions are via a drip and take about an hour. I did ask about tablets instead of infusions and he said this would not be the best option in my case and that the success rate of prevention is not as good. He quoted me 50% chance of no recurrence of melanoma or tumour elsewhere if I did not have the infusions; 72% chance of no recurrence if I have them. The oncology unit has a helpline that operates 24 hours in case I have any side effects from the treatment so I can get immediate advice on what to do.

Best of luck to you and if you have any questions I might be able to answer, please ask.

Thank you….. yeah it’s come as a bit of a shock to be honest and trying to get my head round it all is daunting but I’m getting there with it all. I’ve literally just had a blood test to start the scans off, I think….

can I just as….. how are you feeling… generally…. Feeling in yourself etc with it all?

Rich

I won’t lie, since I got referred by my GP in Feb I’ve been a bit of a mess, expecting the worst, feeling my body has let me down and blaming myself for not going to the doctor sooner. I’m 60 and I’ve never been ill before - having so many hospital and GP appointments has been tough and a total drag (the melanoma was on the bottom of my foot so I’ve spent two months post surgery not being able to walk properly and having to have dressing changes twice a week). Aside from that I’ve got what I think is stress-induced indigestion (at least I hope it’s just that!)  But otherwise I’m feeling ok and hoping the infusions don’t have too many side effects. A diagnosis is really life-changing though….I guess you just have to find a way to cope with it and make the best of it! 

Good luck with your scans

I suffer from Ulcerative Colitis and take medication for that… had it for 22 years now’s…. I’m healthy but have also been plagued with some type of health issue since I was born. Had asthma/bronchitis/ pneumonia as a kid…. Outgrew that at 13….(I even ran marathons, played football etc but have always had something health wise) At 24 got diagnosed with ulcerative colitis….now this…. I’m sure Gods  punishing me for something… I’m far from religious though but it feels like I’m always being tested. So with that I understand how you think your bodies let you down…. Because that’s exactly how I feel now.

trying to stay upbeat and positive with it all but at the moment it’s hard.

HI Rich.

One further point which I didn't mention in my previous reply: I found that by enlisting on a long-term fitness challenge (the Melanoma Focus 1000 Mile Challenge) after I had settled into my immunotherapy regime, this gave me a goal to aim for which pushed me to get fitter which can't be a bad thing when you're asking your body to kill off the cancer.

It might not be for everyone, but I certainly enjoyed it (and raised a few £s for the charity at the same time).

All the best.

Yeah it’s most definitely something I’ll be doing again for myself….. had knee surgery at the end of 2022 also which kind of put me out of action really but loved running, more for the mind but got into pretty good shape at 1 point doing it so it’s something I’d consider anyway.