Immunotherapy

Hi Tinktoo, I’m sorry to hear you have a recurrence, it sounds like you are going to have a lot of questions at that appointment on Monday. You may want to read up on immunotherapy and targeted therapies (that only BRAF +ve can have) I find the melanoma patient decision aid quite good at putting things together in one place and identifying what most concerns you. I’ve put the link below.

https://pda.melanomafocus.com/stage-three/

Ive had the targeted therapy Dabrafenib, and immunotherapy Pembrolizumab. I have only had one inguinal lymph node removed and that was done by keyhole surgery. 

, and Sailor2, I think both have some experience that is relevant to your situation, and I hope some others pop in to give you their experience. 

Hi Tinktoo

So sorry you’re here having to proceed to that next step.

I had a full inguinal dissection last May, but they didn’t take any iliac nodes. It’s big surgery and you’re probably going to be out of action for a good 2-3 weeks, and maybe even longer if the incision goes much higher for the iliac nodes. I did a full week off being off sick, then started working from home, although that was much trickier than I’d anticipated as I couldn’t sit still or comfortably, and it was quite tricky having the laptop actually on my lap! If you’ve got a proper desktop, that might be easier, but only if you can position yourself with your leg up.

I was really lucky that I didn’t have any complications with the wound and it’s all healed really nicely. The drain, on the other hand, was an absolute pain! I think that seems to be the general consensus, that the drain bit is somewhat unpredictable... i was in a fair bit of pain at times, and I’m pretty sure that was all drain related.

I did blog about it all at the time if you want to have a read, I think I’ve forgotten a lot of it now to be honest!

https://onedaywithoccasionalleaps.wordpress.com 

You’ll probably be put on different treatment to me though, as I was BRAF negative, so I can’t really help on that front.

Please do shout if you have any specific questions, and I hope you get all the information you need on Monday.

Best wishes,

Kate 

Hi Tinktoo 

I had two lymph nodes removed from my groin, and recovered full movement & strength in my leg.  The scar is clearly visible and around 15cm long but if I hadn't developed an infection the entire episode would have been done in approx three weeks.  I did not have any drains to deal with, and to be honest I've never heard of illiac nodes before reading your post so I can't help you with that.

My body simply refuses to accept miracle cancer drugs.  I tried Dab & Tram pills first and after three weeks of plain sailing the side effects exploded culminating with a night in hospital and my oncologist cancelling the treatment.  More recently I had one session of Ipi/ Nivo. Whilst I felt OK, at a pre second session check up; the team found my heart rate was racing, my thyroid "deranged" and so they put me on a series of other drugs & steroids to resolve all this...  Its taken three months to get back to normal as I ended up with temporary nerve damage in my left leg & foot. My oncologist has now taken me off all immuno drugs.  My experience I think is rare, and I have read many accounts here where people have had far better results.

There's more info about all this on my profile which you can read if you like by clicking on my name.  Of course I will be glad to try and answer any other questions you have -just send me a message.  One tip I would give is to get a bed table on a stand with wheels.  It was and still is invaluable when using a laptop in bed or eating meals, drinking etc.  Probably the best £12 I ever spent on eBay!

Take care and let us know how you get on.

J