Emotions coming to the end of immunotherapy for melanoma

Good morning , welcome to the online community, I hope you will join me and some others in the melanoma group, I’ll put a link in for you to find us. https://community.macmillan.org.uk/cancer_types/melanoma/discussions

I have been on Pembrolizumab for a year and stopped and then a year later after a recurrence I’ve been back onto Pembrolizumab and I’m still on it, in fact I go for treatment today and I must dash and not answer you fully but I hope you join us in the melanoma group and I can later show how I understand.

Morning 

Warm welcome to the club no one wants to join 

Pleased to read you have the light at the end of the tunnel coming into view, must have been a gruelling year for you :-/

The way you are feeling is oh, so normal. As you finish or get close to the end of treatments it's like having your safety net removed and all those 'what if' worries return.

There is a paper written for 'Life After Cancer' patients I'll place it below for you to have a read through - It helped us get our heads around what the heck just happened; hopefully it will help you as well.

There is a Melanoma Group here you could join where you could get reassurence from other 'ex' melanoma members and there is also a Life After Cancer Group if you fancy dipping your toes there.

This is a very good read...

https://community.macmillan.org.uk/cfs-file/__key/communityserver-discussions-components-files/196/after-the-treatment-finishes_2D00_then-what.pdf

Hope this is of some help for now, take care, G n' J

Hi KT, thanks for your message, I'm rubbish with technology but ai did see the melanome grouo so fingers crrossed I'll join it and chat to you soon! So sorry you're having to go through the treatment again, that must be really tough. Hope it goes ok today.

Hi G n' J,  how are you? Thanks for messaging, it's nice to know I'm normal (ish!) coz I sort of expected to be really happy so it's a bit of  a surprise not to be. Melanoma is one of those ones that I think other people seem to view as minor and not so serious too which maybe makes it harder coz you feel a bit isolated and misunderstood - that might just be me though. Thanks for your suggestions, the paper sounds like a good place to start! I'll join the melanoma group too.   

Hi

Well it is only a mole isn't it - or so most people assume

We are 'fine' thanks (Fatigued, Insecure, Neurotic, Emotional) no seriously, we are doing well between us - J was the patient I was the one that felt as useful as a chocolate steam iron   Mind you that was 2012 so we have had plenty of time to adjust.

As we used to say - "Don't miss today's sunshine worrying about tomorrows rain"....

Hope you have a lovely Christmas, G n' J

Hi G 'n J,  ha ha! Good analogy! Ahh bless you,  I can totally relate to that, I reckon my husband feels a bit helpless too but I bet you were the best asset J could have just by being around -makes such a difference. Glad you're both good now. Thanks for your help,  hope you have a great Christmas too! 

Hi KT, just wanted to see if you got on ok with your treatment last week? Hope it wasn't too bad. 

Hi , treatment went ok, cannula in first time, But a lot of hanging around I was 20 mins late going in, and got caught in road works and traffic jam, so event diverted to have lunch out. I needed a cheer up anyway. I have an enlarged node that I can feel and scan results confirmed this week so The plan is to carry on with pembro and I will have a biopsy soon. So I’ve been trying to get my head in a positive slot of them finding it early, I have options, and perhaps I can do the decluttering I keep putting off. Today I’m going to have a haircut to cheer me up, it’s overdue. My next pembro will be a double dose so I don’t have to come in over Xmas unless they book pre op appointment for me.

 I hope to see you soon in the melanoma group. 

Hi KT,

Traffic is so annoying, I find that with my journey for treatment too!  Good that they got the cannula in first time though, I hate that bit and the bloods coz I was terrified of needles prior to all this - I have non existent veins too so once the weather's cold I have to sit with my arm in a bucket of hot water first! Really sorry to hear about your node, though as you say at least it's early which is definitely a positive. I hope the biopsy goes ok for you - is that a needle in the armpit? I've not had a biopsy, just the SLNB. Good to hopefully not to in over Xmas too, nice to have a bit of time out at least. I totally sympathise as it's really hard to keep positive over a long period. I did join the melanoma group but I'm a bit of a technical idiot! So I'm finding the naviating about a bit hit and miss! I can find it fine under my groups but wanted to see how you were and going into my previous message seemed the easiest way!

Hi , my veins are easy to find but get shy and close up apparently! I don’t look. The biopsy will have an ultra sound guiding the person to put a needle into my enlarged lymph node in my groin, it was no problem last time I couldn’t feel it being done. It’s just the ground hog day feeling of doing it again, when I’d imagined a far better outcome a while ago. I’m just been refocusing that at least things are moving forward, but its now moving a bit slower forward. 

What is it about coming off the drug that’s making you feel dissatisfied, that’s not the right word but I guess your feeling a bit like me not ready or reconciled with what’s ahead maybe?