Need Some Advice From My Peeps

Hi Jenn and Gary,

Am sorry for your dilemma, but also happy that your news is relatively good (stable, no spread).

I am in a very similar situation to yours, and seems we are on the same scan cycle (mine was a few days before yours, had to wait over Labour Day for the results). And with similar results. Pembro has half worked for me – one small tumour grew burst and then disappeared (more or less); but its larger neighbour (about 2cm little more) wont go away – it does not really grow nor does it shrink. Met my onc this Wednesday and he said its a difficult decision – if was shrinking then continue treatment, if its growing do something else, but if its stable, what to do?

Three months ago he was inclined to resect it, i was getting psyched up for this meeting the surgeon and plastic surgery teams and ready to go with this (though not happy about it since i am terrible on crutches and i will be out of action for six to twelve weeks plus the surgeon warned me this would be "a project" unlike my previous two excisions). Then he changed his mind and said lets continue treatment. Fine with me as I could take a work trip to Tunisia and stop in Milan on the way back 🙂

this time my nurse thought we could do the same but he seems more keen on surgery and i think he is probably right (and reading your post makes me think the same)

in my case radiation is not a great idea (he had earlier promised this to me and it seems pretty easy!) because he said once radiated if it comes back they cannot resect – not sure if this true but its what the tumour board concluded. so its either continue treatment which is not working, or surgery. i think t vec is possible too but georgetwon does not offer it plus it may not be as effective as surgery.

so i am facing the same dilemma you are facing.

i know treatment every three weeks (pembro only three weeks not two!) is a pain, actually my employer is really good about this and i am fitting it into my routine, i try to chill that day. so i am ok with it. although am getting some side effects now like nausea.

so my hope is that the pembro has worked ok as an adjuvant (hope same for you with nivo) but that we have to use surgery to get rid of it (try to). am going to get a second opinion but have emailed in the past to celeste (hugs and thank you although i am british so we dont really do hugs! :-)) and she sees surgery as a sensible option, and based on your post seems like its sensible too.

i guess you wonder why does the drug work for one tumour and not the other, what does it mean to be a partial responder, does that mean the drug works and we can use it if it spreads or not? is a weird twilight zone we inhabit.

so please keep me posted but i think i would go for it. we are probably going to biopsy just in case this shows improement and the surgery not needed, but i have done two biopsies on the same thing and have been disappointed each time. so i think biopsy is probably a good idea but am resigned to surgery. my doctor is reluctant for me to wait eight weeks (and take another trip in between! ireally want to take holiday this year and take my daughter to london for college) and thinks i should get on with it. so i would hesitate before taking your planned trip – ask your doctors honest opinion on this. i can usually argue my doctor in letting me take trips but thats not good, i want my doctors best opinion and i think he is telling me to do surgery, so try to seek your doc'shonest view too, not what he thinks you want to hear

gary, am very happy for you. you are also an inspiration for us. i really dont want to do surgery, but you stayed cool, tried the other options they were not working 🙁 and then went for it. am very happy that it seems to be working. i always love reading your advice and stories when i lurk here.

jenn, sorry about this but the news is good and bad, hope you can have a good discussion with your doctor, and i also look forward to reading the views of others

good luck and take care, mark

PS in my case after excision i wont be able to receive any more drug treatment since i will technically be NED. you may want to check this in your case. this is one more reason why in june i decided to keep going with treatment and not do surgery. since the treatment might be working well as adjuvant. would be interested to know what your onc says, will you be able to stay on treatment or do you go back to watch and wait (which you and i both tried to avoid!). good luck mark