Possible Treatment

Hi Dan73, 

My husband is in a very similar position to yourself. He was diagnosed Stage 3 after two metastases were found on his upper arm. He had them removed, followed by a CT and then a PAT CT to check potential “hotspots.”  The PAT CT showed no active cancer.  My husband is also BRAF negative. We are awaiting an oncology appointment to discuss adjuvant immunotherapy, so we’re probably in a similar position to yourself.

I’d also like to know why the team doesn’t feel the need to investigate the lymph nodes. I guess the rest of our questions will be around the practicalities of treatment - how frequently it’ll be given, where and how, likely side effects, what to do about those etc. Also if there is a choice of different drugs available and the risks/benefits of them all.

I’m not sure what else we need to ask either, so any ideas from others on here would be gratefully received. 

I hope your appointment goes well and that things move swiftly from here on in.xxxx

@Ruby2014 mine was also on arm, sounds as if we are in the same situation.  I worry that there could be small traces in lymph nodes that were perhaps too small to pick up on scans.  The only way to know for sure is SLNB.  I asked the plastic surgeon if he was doing this and he said no as there was no need to.  I will defo be bringing this up with the oncologist on Friday. and will let you know how I get on.  

For me, if it's a choice of treatment or wait and see after 3 monthly checks, I will be choosing treatment.  

Hope your husband gets on well.

@ruby2014  just back from Beatson after meeting oncologist.  Start pembro a week on Monday, one dose every 6 weeks for a year.  I asked about lymph nodes and again was told they do not need to do anything with these.  SNLB is normally done to show if, in transit, they already know mine was from the first bit of skin that was removed.  I said what if there are any small cells in lymph nodes that were not picked up in my scan and were advised that if this was the case pembro would help attack them to stop them from developing further.  i was only offered this treatment to prevent melanoma from coming back.

Hi Dan73,

Thanks so much for getting back to me about your appointment.

I’m wondering if you felt reassured by what the oncologist said? I guess it makes sense that the treatment should eliminate any cells lingering in the lymph nodes. Also, they do seem to be moving quickly with your treatment, which is great news.

I hope you get on well with Pembro and you don’t suffer any side effects. I’ve heard many reports of people sailing through it, so I hope you do likewise.

Look after yourself and let me know how you’re getting on.xxxx

Dan73 good morning , I have read your profile and I am sending you best wishes. I am also under the Beatson team ( dr tan ) and I am currently near completion of 9 rounds of immunotherapy. Sending positive thoughts your way xx 

@Amccl I am also under Dr. Tan, I did feel reassured after my meeting.  Just want to get started now, hoping the side effects go easy on me.  Well done for tolerating 9 rounds, how did you find it?  I get my first round a week on Monday.  I had already booked a weekend break to caravan and go on the Friday of the same week.  Hoping I will still be able to go.

I am in on Monday 25th July for dose 9 and honestly the side effects terrified me but I have been absolutely fine on the whole. X 

That's so good to hear,  I am in the same day,   You will spot me a mile away as will be an emotional wreck again, cant seem to get a hold of my emotions at hospital visits.

It’s fine to be like that, honestly this is my 9th dose and hopefully last dose ever! I hope it’s my last visit to the Beatson ever too! Emotions…. Yip Ave cried my eyes out everytime I have went up! X my “ story”is there if you click on my name x ps…. You can do this! X 

So happy for you, bye bye Beatson and on with enjoying life  x