No longer NED – looks like I’m back – Melanoma Research Foundation

This topic has 14 replies, 6 voices, and was last updated 6 years, 1 month ago by DZnDef.

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- February 21, 2018 at 7:49 pm
- Quote
JuTMSY4
Participant
After what's been a great almost 2 years NED/NEAD, last week, my scan revealed a small metastatic tumor on my adrenal gland. An MRI seemed to confirm that earlier this week. I was wondering if anyone (probably Bubbles to start) has any information on acquired resistance. Here's my short history:

December 2014 – Dxed Stage 4 – tumors in bones, possibly liver (reclassified as fatty sparing), distant lymph nodes.

January- April 2015 – Ipi. Eliminated bone pain.

April 2015 – Began Keytruda treatment

December 2015 – NEAD (spots on liver still on CT, but eventually reclassified to fatty sparing).

October 2016- Stopped Keytruda

October 2017 – clear scan

February 2018 – PET showed sub 2 cm spot on right adrenal gland.

So, there's a lot of factors there which make me an interesting case again. I know adrenal tumors don't tend to cause any problems initially, but I do feel pretty good. I had very limited adverse reactions to ipi and keytruda. I'm also waiting for a call from my doc to discuss the next steps (in concrete terms), but that our previous discussion was surgery and restarting treatment. Does anyone else have any other information or experiences to draw from?

Thanks again. This place is always an amazing resource.

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- - February 22, 2018 at 12:29 am
  - Quote
  CancerSpouse
  Participant
  Hello and sorry about your scan results. My husband has a small adrenal tumor, too. At this time, it is his only tumor. He's been on Keytruda since 10/17, and the 90-day scan showed a decrease in tumor size. (He has scans again today, so hoping the trend continues.) For what it's worth, the tumor has zero physical effects on him. At no time has his melanoma oncologist at UCLA suggested that it be surgically removed. If that changes after the latest results, I'll get back to you. Wishing you strength, Carol
- - February 22, 2018 at 1:43 am
  - Quote
  Bubbles
  Participant
  Hi Sweetie! Shoot! Sorry you are dealing with this. Surgical removal might be an option. What is your BRAF status? A redo using ipi/nivo might be another option. There are a zillion different trials…involving: IDO inhibitors, HDAC inhibitors, LAG-3, etc. Talk to you doc about these things and keep us posted. Celeste
  - February 22, 2018 at 3:02 pm
    
    Quote
    JuTMSY4
    Participant
    
    Thanks. Mentally and emotionally, I'm upset, but I'm dealing with it, i think, fairly well.
    
    Braf negative (or no mutation, whatever the term of art is) or else I think we would have tried that first. When I was first Dxed stage 4, Ipi was standard and and anti-PD-L1s were literally just approved (or at least just Keytruda, I think).
    
    I'm just wondering if you've seen any studies on restarting anti-PD-L1s. I keep reading that they permanently change your immune system, but that there are responses upon restarting. Thanks again for all your help!
  - February 22, 2018 at 3:39 pm
    
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    Bubbles
    Participant
    
    Nivolumab/Opdivo and Pembrolizumab/Keytruda are both anti-PD-1 products. Nivo was FDA approved first for melanoma. Approval for pembro followed rapidly. They are basically the same in side effects, response rates, etc. Here is a report on folks who took nivo after progression, having already taken it initially:
    
    http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/01/nivo-after-nivo-or-nivo-after.html
    
    Given their similarities in all other aspects, I would guess that response rates in this scenario would be similar as well.
    
    Here is a primer that I put together on melanoma treatments generally that may (or may not) give you an overall view: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html
    
    While folks can sell pass ports on this site with impunity…I trigger the spam blocker if I put more than 2 links in a post….more below…..
  - February 22, 2018 at 3:48 pm
    
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    Bubbles
    Participant
    
    Here is another post with links within about what to do after failing anti-PD-1 or progressing after that treatment: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/03/what-to-do-in-melanoma-after-anti-pd1.html
    
    Perhaps radiation could be added to a systemic therapy? I don't know, given the location….but we know that radiation combined with immunotherapy boosts repsonse.
    
    There are trials combining HDAC inhibitors with anti-PD-1:
    
    http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/11/hdac-inhibitors-for-melanomawhat-are.html
    
    more below….
  - February 22, 2018 at 3:49 pm
    
    Quote
    Bubbles
    Participant
    
    There are IDO inhibitors combined with anti-PD-1:
    
    http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/07/pembro-keytruda-and-epacadostat.html
    
    And…many more. Melanoma sucks. I am sorry. BUT….you have reason for hope! Hang in there. Celeste
  - February 22, 2018 at 4:18 pm
    
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    JuTMSY4
    Participant
    
    Excellent stuff – you've given me a lot of info. Much appreciated.
- - February 22, 2018 at 7:19 pm
  - Quote
  ed williams
  Participant
  I am probably just giving you stuff that Celeste already has, hopefully something new in these links!!! http://www.onclive.com/conference-coverage/asco-2017/pembrolizumabentinostat-active-in-melanoma-patients-refractory-to-checkpoint-inhibitors  http://www.nektar.com/application/files/8115/1042/7902/SITC2017_-Oral_Session_207_-_PIVOT-02_-_Adi_Diab-preso.pdf
  - February 22, 2018 at 7:20 pm
    
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    ed williams
    Participant
    
    http://www.onclive.com/conference-coverage/asco-2017/pembrolizumabentinostat-active-in-melanoma-patients-refractory-to-checkpoint-inhibitors
  - February 22, 2018 at 7:22 pm
    
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    ed williams
    Participant
    
    One more that I came across last week!!! https://news.bms.com/press-release/partnering-news/bristol-myers-squibb-and-apexigen-inc-announce-clinical-collaboration-
  - February 22, 2018 at 7:35 pm
    
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    ed williams
    Participant
    
    There is also some interesting stuff happening with SRS radiation that Celeste has been talking about for a long time. https://immunosym.org/daily-news/sbrt-could-augment-anti-pd-1-therapy-patients-metastatic-disease#.Wmt3Ml59D-g.twitter
- - February 24, 2018 at 4:22 am
  - Quote
  MelanomaMike
  Participant
  Hi JuTMSY4, damn, good "run" though! back when my Melanoma had a Leg Fetish {when it was ONLY in my left leg, Primary} i was just about at every 2 year's then one would pop up so, sounds like our tumors could be related haha..Nevertheless, im so sorry! it sucks, its mentally draining when "the news" of "Its Back" fills our heads but then, like we do {or should}, we pick ourselves back up & go back to war cuz were NEVER ever really "out the clear", all we can do is hope for Longevity & quality of Life. You never left us JuTMSY4, you just had a break from Melanoma, from us, this website {assuming you stopped posting here} and thats ok….We love you regardless, Mike…
  - February 27, 2018 at 6:53 pm
    
    Quote
    JuTMSY4
    Participant
    
    Thanks. I told my wife that this part (of this phase) was the "easy" part because it was just surgery (hopefully laparoscopic) and then treatment (which I've had an easy time with). The hard part will be in 3-4 months when I get scanned again.
    
    I was never much of a poster, but I did lose touch with a lot of the updates. I guess I'll dive back in and I knew/know that Bubbles usually has the most up to date info re: treatments.
    
    Thanks again. -justin
- - March 3, 2018 at 8:48 pm
  - Quote
  DZnDef
  Participant
  Looks like you and I are in the same-ish boat. Different details, but same experience of doing well for a while followed by a set-back. Feels a bit like a punch to the gut after doing well. I've got brain issues. I expect they'll bring me through ok on those this rime around but not sure what will be recommended for me going forward. One thing I can say about melanoma, it isn't boring. Good luck to you.
  
  Cheers!
  
  Maggie

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No longer NED – looks like I’m back

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