Opdivo after NED diagnosis

Posted By
Carybaum
3/14/2017 8:37am
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Replies: 16

Hi, all. 

i was diagnosed Stage IV Metastatic Melanoma with several mets in both lungs and liver in June, 2016. I am BRAF negative. Primary was on my right upper arm. The primary was fully excised in Aug, 2014. Started Opdivo in July, 2016. After 18 infusions, my latest PET/CT scan on March 10'th shows that I am NED. Our oncologist has, frankly, no idea on where to go from here. Has anybody out there become NED and continued the immunotherapy? If so, how long were you receiving infusions post-NED? Thank you and all the best in the fight. 

 

Regards,

 

Carybaum


First of all... CONGRATS on the NED! "When do we stop?" has become the big question. Initially, docs were basing the answer to that upon when folks in the trials were stopped. I'm not sure what the trial docs based their reasoning in, but that was anywhere from 18 months to 3 years. However, since the more widespread use of Keytruda and Opdivo, there has been a seeming increase in cases of autoimmune side effects... sooooo... docs are now questioning whether or not to keep their NED patients on these meds for the full trial duration. There will likely be more "hallway discussion" regarding this at ASCO this year. Hopefully there will be an updated general conscensus soon. If you are not showing signs of your body attacking healthy tissues (inflammation, elevated liver or pancreatic enzymes... etc), you may want to consider remaining on the drug for a few more months. The last I had spoken with my previous melanoma specialist, I was informed that the latest "thinking" (hallway chatter... thoughts... ideas) amoung the oncology community, is 6 months beyond NED and/or stability. I don't think there really is a "right" answer, since individuals respond so differently. Docs are trying to remain conservative, yet avoid the pile up effects that can lead to autoimmune issues. I began Keytruda in Nov 2014. My body was NED by January 2015, and although my brain had ceased cropping up new lesions, it still remained an area of concern. I didn't stop the Keytruda infusions until July 2016, when the inflammatory arthritis and pancreatitis hit. We were shooting for the 2 year mark. I made it 20 months. Had we opted to stop sooner... who knows? At this point, it's almost come down to personal choice, until some concrete data can show everyone otherwise. Side note... my last scans are all still showing nothing but bits of scar tissue... soooo... the immune system appears to have been well trained, as I am now 8 months off infusions. Have a chat with your doc... Can you go back on the drug if you have a recurrance? You can get treatment for the potential "late developing" side effects... but do you want to put yourself into that loop? Can the doc add some extra blood labs to watch for early development signs of the most common late onset side effects? In the meantime between appointments, do yourself a big fat ol' happy dance for that NED! : )

Carybaum - (3/14/2017 - 8:00pm)

Thank you, Niki. This will be interesting, as I am now probably moving back to the US and consulting with a new team. My "happy dance" is a bit more like a slow shuffle, but I'll darn sure take it!

 

I recently had a great scan and will likely get the NED badge back next scan, I asked my onc how long after becoming NED would I stay on Opdivo and she said as long as I continue not to have any bad side effects then she would have me stay on it for a year. It's definitely up to the descretion of the docs right now, but sounds like 6 months to a year is what some are going with so as to not keep patients on for too long. 

Jenn - stage IV NED - Completed Ipi/Nivo (Yervoy/Opdivo) + surgery

Hi Carybaum, I have a link for you on the topic from a couple of months ago. The panel in the link is top of the field in Melanoma. Best Wishes!!!Ed https://www.youtube.com/watch?v=aSXv02OdoO4

Carybaum - (3/14/2017 - 8:00pm)

Thanks, Ed. 

So thrilled to hear of your happy news! This is an inspiring story for all melanoma warriros. I am curious to know what was the stage of the fully excised primary that was removed in 2014?  

Carybaum - (3/14/2017 - 7:57pm)

There was no staging for me. Bear in mind that the excision was performed in Hong Kong after a biopsy ordered by a dermatologist. I was not referred to an oncologist until June, 2016 after the PET/CT showed metastasis. 

Carybaum - (3/15/2017 - 12:56am)

Just did some research of my pathology report. I was Stage 2a-T2B. Although, I was never actually told this at the time. 

Bubbles - (3/14/2017 - 9:40pm)

Hi Carybaum,

I guess I am the poster child for your question.  I was diagnosed with Stage III melanoma in 2003. Advanced to Stage IV with brain and lung mets in 2010.  Had brain met zapped with srs and upper lobe of lung removed surgically to get rid of lung met.  I did opdivo (back when it went under many other names!!!) from Dec 2010 to June of 2013 in a 2 1/2 year Stage IV NED trial.  My cohort did very well.  I remain NED with no further treatment.  While that is  slightly different from your story...the real story is that as we have gone on...many melanoma top researchers....Dr. Weber, the lead investigator of my study included...have contended that 2 1/2 years of treatment was probably more than we ever needed.  Lots of melanoma big dogs contend that a "certain" amount of med is all that can do us good and more than that will just cause increased risk of side effects.  Still, length of treatment remains the zillion dollar question as a specific timeframe for treatment has yet to be clearly defined.  Even more complex are the folks who have been treated with immunotherapy and have gained "stability" rather than attaining NED status.  What should they do?  Big questions with no detailed answers.  I wish you well with whatever you decide.  Celeste

Carybaum - (3/15/2017 - 12:25am)

Hi, Celeste. Thank you for the reply. I guess my situation falls under the "problems we all wish we had" category. I am certainly thankful to be here. And, by the way, thank you for all of your hard work informing us in the melanoma world. You are an inspiration to those of us in the fight. 

Mat - (3/15/2017 - 12:50pm)

Celeste, my sense from consulting with Sloan is that, generally speaking, they have folks that are NED or close-to-NED suspend Opdivo after ~1 year.  In my case (not NED and having some side effects), the advice was to continue with Opdivo on a 12-week (instead of 2-week) schedule.  The theory being that the drug has a half-life of ~12 weeks.

Bubbles - (3/15/2017 - 4:41pm)

Interesting, Mat.  I have several peeps who have, in conjunction with discussions with their melanoma docs, elected to stop immunotherapy and have close observation.  Additionally, my study was opdivo every 2 weeks for 6 months, then every 3 months for two years....for both the NED and active disease, Stage IV arms....the results were comparable to all the other data that has since come out since from folks getting Keytruda or Opdivo every 2 weeks "until progression".  Hang in there!!!  C

BrianP - (3/15/2017 - 10:17pm)

12 weeks.  That's a lot longer than I would expect.  I think ipi has about a 2 week half-life.

tschmith - (3/16/2017 - 10:13pm)

I was treated with Keytruda from June 2014 to June 2015.  After one year, I had no signs of active disease.  Dr. Atkins ordered a PET/CT scan and Brain MRI. No active disease was detected.  The decision was made to stop treatment and follow-up with a Brain MRI and CT scan of the Thorax, Chest, and Pelvis every three months.  I was just scanned in March and am still NED. If my June scans are good, I will "graduate" to scans/brain MRI every six months.

Carybaum - (3/17/2017 - 3:24am)

Thank you for the info. May the excellent news continue!

you just literally made my day.  My mother is currently on opdivo every two weeks after having two treatments of ipi/nivo (she wasn't given the third treatment due to side effects)   She seems to be doing very well on the Opdivo but we will have to wait another month to get the cat scan.   I am praying that its working alone.   I don't see too many people on here with liver mets.  We werent told how many, etc.  But one of the tumors was rather large (the results from very first cat scan after her two ipi/nivo- were positive results and slowly these tumors seems to be shrinking in size and appearing less dense.)   I still don't understand why they just can't remove the cancerous part of her liver.  It is in her spleen too but can't that be removed as well?  Look at me wanting my mom to get all her organs removed!  I just love her so much and want this melanoma to get out of her body.    I can't tell you how happy I am of your news.  Thanks for sharing.  It made my day. 

Robin