New to site

Hello Vela, 

it sounds like you’ve had a rough ride. Did you have dual immunotherapy to start with? 

N 

Hi NinnaMarie

Thanks for your response to my first post on this forum. I'm still trying to navigate the site, with some difficulty!

The first indication that I was ill was when a haemorrhaging tumour was removed from my bowel, which was subsequently found to be metastatic melanoma. They then went on the hunt for the primary, which turned out to be an unusual blueish lump on my leg and which was found to be nodular melanoma when it went to pathology.

Because my bowel tumour was completely removed they decided that single immuno should keep me disease-free, and I stated on nivo, but only managed a few out of the 28 prescribed treatments before severe colitis made it necessary to stop.

Then we knew there was nothing to be done except try to enjoy what time I had left. I got my prognosis one week before lockdown. That was very hard to take, since what I most wanted to do was spend quality time with family and friends.

I'm still here though, so I'll be able to do those things in the coming weeks providing the general public behave sensibly and cautiously and don't cause another lockdown.

V

PS I can't see how to send this, so I'll log off and see what happens!

Hi Vela,

Just a little word to wish you many heartwarming reunions with your friends and family and to send you some virtual hugs. I hope you can make the most of the UK's amazing turnaround in this Covid story.

Best wishes to you

Miranda

Hi Vela,  I'm new on here and just want to send you love and best wishes for your family and friends catch ups and no doubt some backdated hug allowances too!   It seems like you've had a rollercoaster of diagnosis and treatment in such a short time.  Lockdown must have been horrendous for you hon, how were you able to reach the calm, philosophical viewpoint you appear to have now?  I'm thinking of you at this time xx

Hi Vela, I’m sorry to hear about what you’ve been going through in the last year, I can imagine that’s taken a while a process. I hope the Macmillan online community can bring some comfort to you as well as time goes on. 

I was wondering if you still see oncology or if you have been discharged back to your local doctor and local palliative team. There is an additional group you might find useful on here I’ve put the link below for you to click on to have a look.

Living with incurable cancer forum - patients only

I was diagnosed in 2015 with metastatic melanoma and had a discussion about having less than 12 months, so your post has reminded me of how that felt,  but fortunately 9 months in Pembrolizumab (which is similar to nivo) became available and my body had no adverse reaction to It, and I’m still on it with just lymph nodes fluctuating in size. You can read a little more about others on here in their profile, by clicking on the user name and picture. It’s useful to do yours if you join the incurables group as the members there have various cancers and are at various stages, some well past their sell by date but doing ok and enjoying the company of others wanting to make the best of their time, but also sharing the bumps along the way with those who are going through it and understand. 

Have you plans to meet up with family and friends soon? I used to see my eldest daughter every 6 weeks as she lives a few hours away so have missed that over the last year. We have a weekly virtual meal together at the weekend though. My other daughter is in Japan so we have more adhoc conversations usually when she’s walking her dog so I get to see the scenery a bit.

i hope you get the swing of the site soon, you will be sent an email of replies but I prefer to read them on the site as the emails sometimes lag behind and on the site you can see all replies and other conversations you might want to join in with.