Need Some Advice From My Peeps

Posted By
jennunicorn
9/8/2017 10:37pm
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Replies: 21

Hey guys! I just had a scan yesterday and got the report this morning... so, good news is nothing new has shown up. But, it basically looks the same from the June scan, which means the stubborn armpit tumor hasn't budged in 3 months. For those that have had stubborn tumors, at what point did you decide to just cut it out? This is its 1 year anniversary.. and the only time we saw shrinkage was on the June scan. Do I cut it out and be NED and cross my fingers mel stays away? Do I cut it out and stay on Nivo for a bit longer? Do I just stay on Nivo until December scan? In all honesty, I am getting reallllllllllly tired of infusions every other week. Especially since I have a new full time job that I absolutely love and hate that I have to have Thursdays off because of this. 

Any advice is welcome.

As always, much love to all of you!

Hi Jenn, interesting, I have a couple of armpit nodes that have been gradually increasing, while everything else is slowly shrinking and my onc wants to wait until the next scan to confirm everything else is shrinking and then consider a blast of radiation for the stubborn nodes. I'm still undecided as to which way to go.

Tony

Tony -  IV - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

Radiation isn't a bad idea, especially since it tends to help the immunotherapy do a little better of a job too. These decisions are not easy ones, it would be nice if the Nivo just did its thing and we didn't have to deal with extra treatment options. I've stuck with my gut instinct through my almost 2 year journey and I think it's done ok for me so far, so my best advice is to listen to what your gut is leaning toward.

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); Completed a year of infusions and surgery to remove last tumor

Hey Jenn,

Sorry, I took a break from the board the last several months.  Great to hear you are doing well.  Stable is good, and as you know I have had my share of radiation and surgeries in addition to immunotherapies.

I have been quite pleased with the "one and done" of surgery.  After my last big one, I've been off all drug therapy going on 9 months now.  Clean scans with no progression.  That after a year on ipi/maintenance nivo.  It feels really good to be "clean".  I had forgotten what it was like, after years of being on all the various drugs.  So that's my vote.  Seriously consider surgery, or possibly radiation.  This only if confirmed that met in your axilla is "alive".  I have a necrotic one there, and in that case it does no harm.  If you've been on the nivo for a year now, you may be getting the long-term benefits.  I think I am, and Dr. Algazi was quite surprised and happy since I had such a long history of being a non-responder.  I think it is helping now and the regular doses are no longer necessary.

Gary

I am so glad you're still doing well 9 months after surgery Gary! I am definitely leaning toward surgery myself, the only thing that would postpone this idea is if it would interfere with my trip to Mexico I have planned for the end of October, if I can do surgery and heal before that, then my gut is definitely leaning that way. I hope you continue to have prolonged benefits and mel keeps its ugly little self at bay! 

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); Completed a year of infusions and surgery to remove last tumor

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

Thanks so much for your input Mark, it is quite a weird spot to be in for us. Will update after talking with my doc this coming week on what her opinion is. She is very honest and open with me so I know she'll give me her honest opinion on what option she feels is best for me.

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); Completed a year of infusions and surgery to remove last tumor

Hey, Jenn.  Both radiation and surgery sound like good options to me.  I would probably have the surgery and add radiation to the area should the tumor be active.  'Jubes' may chime in, but you can look back on her posts...as she had a persistent lung met (despite general response to systemic therapy) removed, necessitating a pretty significant surgery, but in the end was happy she did it. Once it's gone...it's gone!!

I wish you my best with whatever you decide!  c

I will definitely ask my onc what she thinks about radiation, she's never brought it up before, so I'm not sure how she feels about it, but doesn't sound like the worst idea. Thanks for the help C!

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); Completed a year of infusions and surgery to remove last tumor

Wondering if biopsy confirmed it's a live tumor? Maybe it's just dead cells lighting up...?

I've had some issues with fine needle biopsies, just can't fully trust them anymore. So, if we really wanted to see if it was still "alive" then going in and cutting it out would be the best way to do that. It isn't very deep in my armpit so it wouldn't be very invasive which is nice :)

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); Completed a year of infusions and surgery to remove last tumor

Jenn,

Congrats on the scans.  I think in your shoes I'd be leaning toward gettng that sucker cut out also.  

Surgery, radiation and another 6 infusions maybe?  Best of luck to you with your decisions.

Brian

 

Thanks Brian, I like the sound of that plan as well! Looking forward to seeing what the onc says on Thursday.

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); Completed a year of infusions and surgery to remove last tumor

Jenn, whatever you decide to do, I sincerely hope it's the end of your mel journey and you can move on with your life!!! Here's to "forever NED" and our best wishes for you always!!

Barb

Thank you so much Barb!

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); Completed a year of infusions and surgery to remove last tumor

Hi Jenn,

My oncologist has been telling me that my abdonimal tumors (which are staying about the same size) could be scar not active tumor.  Mine are on my adrenal gland and lung base.  Could yours be scar?  I think someone else mentioned "dead" cells - is this the same thing?  How bad would recovery from the surgery be?  I tend to be surgery averse.  I'm really all things procedure related averse.  Basically I'm afraid of my own shadow.  That said you seem to be so strong and so able to do anything.  Is there a reason why you didn't have surgery earlier?  What are the doctors suggesting?  I wish you well and good luck in your decision.

 

Best,

Jennifer

It is still showing "uptake" on the PET scan, so there is some kind of activity happening. Surgery recovery would be easy I believe, since it is not very deep in my armpit and it is not my dominant arm side. I didn't have surgery when we found it because at the same time there was groin tumors showing up too, and since those have been taken care of by treatment, all that is left is this stubborn armpit dude. My onc did bring up surgery as a possibility when I had my June scan, she basically said "if in September it doesn't show more shrinkage we can discuss surgery". So, that's the conversation we will be having on Thursday.. do we cut it out? Do we add radiation to that?

Pre-cancer I hardly ever went to the doctor, never had surgery before, and since mel showed up it has thrown me into more procedures and doc appointments than all medical stuff in my lifetime combined. For some people I know that can add a level of doctor anxiety, but for me it has made me less anxious about medical stuff. Now I'm like, oh surgery? Ok! I'm pretty much down for whatever the best option is at the time, haha. I also just started a job in the medical world so I am even more relaxed around doctors and medical stuff. 

Thank you for your well wishes :)

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); Completed a year of infusions and surgery to remove last tumor

Hi Jenn- Glad to hear most things are stable for you and nothing new....i'm sure there are no wrong answers to your question, but i think i would be leaning to surgery....get it out....followed by radiation, (i did it).....and may be some "clean up" nivo for a few cycles ....

Lots of data on synergistic affects of radiation when combined with immnunotherapy(which i know you already know)

Let us know what you decide....

 

GOOD LUCK,

jenny

Thank you Jenny!

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); Completed a year of infusions and surgery to remove last tumor

Hey Jenn! Congrats on the scan!!! You have a fortunate problem so to speak. It's another fork in the road and I can't chime in with any advice besides just stick with your gut. I know you're good at listening to your instincts, but sometimes the info gets jumbled in our noggins. I always wrote out the pros and cons of different treatments on paper - you'll know which way you're leaning by the time you're done writing! Sounds crazy, but I always felt my heart respond as the thoughts spilled out of my brain. It's like talking and listening at the same time. 

Keep us updated on your decision! We're all rooting for you! 

Lauren

WithinMySkin

www.Withinmyskin.com

 

Love that idea Lauren, thank you! Will post an update after my onc talks with the tumor board and we get some more input from other mel specialists.

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); Completed a year of infusions and surgery to remove last tumor