Axillary lymph node dissection & immunotherapy

Hi , I am glad that treatment has started for you even though you feel stiff and sore. We have spoken before I have only had one lymph node removed which was in my groin not a group of them so my experience of surgery won’t be the same. 

I have had Pembrolizumab (Keytruda) which is one of the treatments you might be offered. You will probably also want experience of people on the combination of ipilumamab and Nivolumab, and of Nivolumab on its own although that will be similar to Pembrolizumab as both drugs are similar but my different manufacturers.

i have Pembro every 3 weeks by a drip through a cannula, I send my husband for a walk while they put it in as he gets light headed being there, I just don’t look. It takes only 30 mins for the treatment to go in with the saline before and after I’m timed to be there for an hour. You are given info on the possible side effects and a 24 hr number to call to report things. 

My first side effect was an all over body rash, two weeks into my first treatment, it delayed my second treatment by a week I was told to take antihistamines tablets (the same as for hay fever) and use aqueous cream. The hospital 24 hour line were very reassuring on that first call and organised to ring me back the next day for follow up and then after the weekend they asked me to come in to see a dr just for reassurance no further action except the delay was required. For a few more times the rash just occurred on my arm oh and every freckle I had disappeared.

I feel I suffer from tiredness each time and just not being my usual self for a few days, I blame this on how it can alter you blood sugar levels. If I try to continue as normal it seems to take longer to feel normal (a week) where as if I pace myself I can now feel ok in just 4 days. My blood tests always come back normal (apart from once when my calcium level dipped) so I think the team are not worried about my tiredness, and it’s just that I can’t walk 10k in a day for that week I will only manage between 2k and 5k. They monitor lots of things including thyroid, & liver function via blood tests prior to each treatment so I go to the hospital twice every 3 weeks. I only have to see a dr every 6 weeks unless I have something I need to discuss, which as I’m very straightforward I don’t need to. I was given some tablets for diarrhoea to take home just in case the first time but I didn’t need them. 

I’ve had 36 doses of Pembro, the first time was after a a spread to my ovary while being on Dabrafenib, it worked quickly and reduced the cancer by half after the first 3 monthly scan, the second I was a virtual complete responder and then a complete responder (no measurable cancer) for the next two scans and I made the decision to stop Pembro, as although protocol for the trials was to have Pembro for two years and then stop if clear, oncologists were feeling that any time after one year if you were clear for 6 months was probably ok. I was clear and off treatment for a year with scans every 3 months then an enlarged lymph node was detected and I was put back on Pembro, after a discussion about surgery. By the time I restarted Pembro 3 nodes were identified as being enlarged and Pembro dealt with two of them but one rogue node was removed by surgery in March. The plan is to continue Pembro for a year past the op at least. So I suppose my use now is adjuvant but initially it wasn’t. 

I hope this helps there is a video that might help from Lancaster University Hospital which might help you it’s relevant for all the immunotherapy treatments. 

https://melanomafocus.com/information-portal/immunotherapy-video/

I hope this helps you and that I haven’t gone on to long.if you want any other info or links I’m happy to help.