Melanoma back again.

Hi and a very warm welcome to the online community

I'm really sorry to hear how many times you have had a recurrence. It must be very hard to keep thinking that they've got it only for it to come back again. 

I've been fortunate so far in that I haven't had a recurrence but I can understand how hard it must be for you to pick yourself up again to face the next round of operations, plus this time you'll be starting immunotherapy.

While you're waiting to see if others in a similar position to yourself respond, if you type 'recurrence' and 'immunotherapy' into the search bar in this group you'll find previous posts on these topics. You could respond to these posts if you wanted to ask the posters anything about their treatment or how they coped.

I'm hoping that having written down how you feel you can leave the worries behind, if even just for a short time. You know that you can come here anytime you want to ask questions or just have a bit of a rant because we all understand what it's like to be diagnosed with melanoma.

Sending a virtual ((hug))

Hi , welcome to the group, it must be disappointing that you are to have surgery yet again. It can take awhile for the positivity to come back. You may not feel in the mood right now but I’m glad you have identified and take action on getting treatment going again. 8 years ago there would not have been adjuvant treatment with immunotherapy so that’s another lucky thing. 

I was wondering if you know which immunotherapy drug you are going to have or if that’s a later discussion? I’m on Pembrolizumab my 5 year story is in my profile. I haven’t had a primary found so I haven’t got that in common with you but I am currently waiting for my CT scan results which are due Wednesday. I am hoping your scan is just a formality a ticking the boxes to say nothing of concern here but we will start immunotherapy for 12 months to make sure it stays that way. If they do find something it will be that they have a base line and can start immunotherapy for a bit longer and hope for some good results from it. 

I hate the bit your in, the wallowing phase the totting up of all the bad bits when you just wanted to be clear and stay clear. Let’s hope you get there again. We are happy to just listen and send a hug, to help with a pep talk or help with a distraction, or recount our own experience just tell us what you think you need. 

Have you got a time scale for when things might be happening? I hate the limbo bit, it’s what causes my wallowing, but when you turn that corner and feel you can fight on it makes the blip a bit smaller doesn’t it. 

Take care 

Hi KTatHome

Thanks very much for your kind response I’m sorry I sounded so negative, your correct in sort of stuck in limbo. It’s the waiting and the series of small operations since last winter that have taken their toll. 
each time is the same , biopsy, wait, operation wait, scans wait.  You know what I mean ?  
this bigger operation is a bit like starting right back from the beginning, it took me 8 years to walk properly (with a limp) without too much discomfort and I know I’ve got that coming again.  I’m being put on Keytruda,(prembrozulab) May have misspelt that . 

My Macmillan  nurse hopefully will call me with scan results this week.
I’m in hospital for a pre op on the 28th,

I then see my clinical oncologist on the 29th.  
my OP is on the 13th and I’ll find out about actual treatment dates on the 29th I guess.  
anyway hope your ok and beating this thing and thanks for listening.  

Hi Latchbrook

thank you so much for your response and advise.  
It’s been good to be able to say things that I cannot say at home for not wanting to worry people anymore than they already are.  

I appreciate your kind words and I’ll update you when I get some results etc.  

in the meantime I hope your ok and feeling well.  

thanks again. 

Hi , don’t worry about sounding negative, I think sometimes it’s a necessary step before we chivvy ourselves back up again. It helps me to acknowledge that it’s very normal unless we get stuck in that phase for too long, and then we just need extra help and to get a toolbox of ways to cope. I bet you have that to some extent already and can reassess what works for you and what doesn’t and gather up a few other resources just in case.

It’s good you have some dates, that helps me no end and can park a worry easier if I have a date to go by. Ive had my own treadmill of scans every 3 months and a few blips requiring a biopsy and resort of treatment. Oh and yes you did spell it wrong but it’s the same immunotherapy I’m on and I’ve had years to get it right, and so my tablet knows to correct it now if I make a mistake . My story of having such a long time on Pembrolizumab is not typical though. If you have any questions about it I pop in regularly so just ask away. It’s so good that it can be had 6 weekly now it was more of a treadmill at 3 weekly. 

Good luck for your results, I often find the Macmillan nurses easier to talk to than the consultants and they have a remit for emotional help to so they may know of local groups or courses that you could consider. My nurses email out to everyone if they find something that might be useful to someone. They have also liaised between surgeons and oncology for me aswell when I’ve had mixed messages, as they have the knowledge of what was discussed between them at the multi disciplinary team meetings. 

Today Im recognising I need to put some of my tool box into action as today is my cancer anniversary, 5 years from originally being told I had metastatic melanoma, and my scan results are due tomorrow. So today I was thinking I wanted to keep busy but I think it might be busy off site today, but I might want to off load on site later, or thinking positive congratulate myself for enjoying the day.

Take care

Hi

Yes the community is a great place to unburden yourself in a safe and supportive environment without having to worry that you'll upset someone.

I'm very well thank you (touch wood). Having had three years of 3 monthly check-ups I should be starting two years of 6 monthly check-ups after my next appointment in August. However, as my May appointment was by telephone I guess I've already effectively started 6 monthly check-ups as I was last seen in February.

x

Thank you so much.  Good luck for tomorrow 

Thank you very much glad to hear your doing well. 

Hi

I'm just checking in to see how you're doing. Have you had your biopsy and results from that and your CT scans yet?

x

Hi Latchbrook

thank you for checking in on me.  I had the biopsy and it is melanoma again unfortunately  however on a plus note the CTs were clear
There seems to be a bit of a disagreement with my surgical oncologist and my clinical oncologist.  

The surgeon doesn’t think a full scale operation with skin graft etc is worth the lack of mobility and pain etc involved due to my cell pattern being discontinuous ???  

And the clinical guy seemed to want me to have another OP.  

Anyway I’ll see who wins out there later I guess.  

However I have my 3 month check up at Northampton on Tuesday morning and then I’m at Leicester hospital Wednesday to hopefully start my immunotherapy treatment.
also on a good note I’ve stopped feeling sorry for myself now and I except that it is what it is and I’ll just get on with whatever  comes  
I’m ok again now thanks to being able to vent off to you guys   

anyway enough about me how are you ?  Hope your well and everything is going well. 
let me know how your doing 

x