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#22 in the books and still NED!

#22 in the books and still NED!

Posted By
1/9/2019 7:10pm
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Replies: 9

Hi Warriors,

Just a quick follow up. Round 22 of Pembro complete and latest scans reveal that at 9 months I'm still NED! My medical oncologist even offered to let me consider if I want to stop the Pembro at this point citing a lack of data on efficacy between 1 year and 2 years of Pembro. She offered this because of the continuing joint pain that has finally caught up with least for now, I said we will Warrior On!

Bubbles and Ed, I know you have weighed on this before but I could use your opinion on this. I am still tolerating the Pembro without any deviation in labs (all remarkably still in the normal range). It is kicking my rear a little in terms of joint pain and mobility (but it doesn't keep me from doing what I need to do like work, get things done around the house, etc). My thoughts are that as long as I can tolerate it Im going to keep going and see if I can hit the full 2 years of treatment unless there is reason not to. I can deal with the aches and pains, my bigger concern is that at some point it starts to do organ damage or some other issue is caused by the Pembro. Hopefully the labs will give me some advance warning of potential problems if they arise?

I completely understand that this is a high quality problem given my current NED status, and I very much want to keep that status; hence the reluctance to terminate Pembro early. I still think PV-10 did all of the heavy lifting but if I have Mel cells floating around and the Pembro is keeping them in check, I better keep on keeping on!






Congrats on continuing the NED status, Tex!



Hi Tex, The issue of stopping is also close to home with me and yes we will be the only people to determine when its the right time to stop is us. MSK suggested me to stop at the end of January 2018 after 2 good scans. Wasnt right for me at that time since I had only been on Keytruda for 5 months.  My oncologist has not pressured me to stop, and like you my labs are all good and except for some fatigue and minor joint pain I really dont have any side effects.  Starting in May 2018 I started spacing out the Keytruda treatments from 3 to 4/5 weeks. My next scans are in February and based on good results I plan to stretch treatments out to 6 weeks. Next scans after that will be the middle of May and pending good results I will push next infusion out 3 months to August coinciding with my next scans. That brings me to 2 years of infusions and hopefully my brain will agree its time to end infusions.

According to my oncologist Keytruda or anti PD1 has been detected on the Tcell out past three months. Also Celeste's trial on Opdivo went bi weekly for 6 months and then every 3 months out to 2 years if I remember correctly so i plan to stretch it out.  Worst case Ill take another treatment in November 2019 with my next scans and end then, I'll determine that later. My overall side effects seem to have diminished with extended treatment schedule.

Well, FYI thats my tentative exit plan if it helps at all.


Way to gut it out, buddy!!!  Here is my best answer as to when to stop therapy:  

I tend to rely on the Wizard Weber.  He has said the folks in my study probably took the drug (nivo, in our case) "too long" - 2 1/2 years.  His reasoning is two fold.  The drug will only have a certain amount of effect and to continue it further will do no good in relation to melanoma but could cause additional side effects.  There is still no absolute answer, leaving each patient and doc to deal with duration of treatment in a way that seems best to them.  However, I think his response and the data I posted in the link are the closest we have to a definitive answer - take for 1-2 years and then stop if you are stable or NED for more than 6 months.  I do think you would find endocrine, GI, and pulmonary side effects pretty quickly through observation of signs and symptoms as well as lab work.  I certainly had lots of joint pain during my trial, but continued to run and work in spite of it...though 'joint pain' covers a wide range of distress among folks on immunotherapy.  (Personal aside - have been having lots of hip, knee, and ankle pain through my current ta-dah and have wondered if it is more related to my past nivo experience rather than my current chemo as it is not a common problem with them.  Who knows????)

So....probably haven't been as definitive as you would like. Melanoma sucks as do decisions and educated guesses we are all forced to make surrounding it!  Hope this helps.  love, c

Hi Tex, as usual Celeste has covered the data which is based on 103 patients from the keynote 006 trial, where 86% out of 103 patients after stopping at 2 years were still doing great 2 years later or a total of 4 year survival. Now, I am probably not the best person in the world of melanoma to ask when it comes to stopping, with my next treatment this Friday I will be one short of the 5 year mark. My situation is kind of different due to living in a different country and having socialized medicine. There is no guarantee that if I stopped and the melanoma came back that I could get access to more drug. If I knew that Nivo would be made available to me again after 6months or a year from now if I was to progress, like the 14% on the keynote trial did, then stopping would be a real choice!!! I feel that the main issue that Oncologist have about setting an end point to treatment is kind of short on data but what is real to them and the medical field is $$$$, and let's be real, could any medical system handle never ending Immunotherapy treatment to those patient luck enough to have it work for them!!!! Best Wishes!!!Ed   Here is a link to the data from keynote 006.

Tex - Your news is awesome and I'm so pleased for you!!! You are truly a warrior!

Ed - we asked the same thing of the oncs at Juravinski in Hamilton - what happens in the event of recurrence? and were told treatment would not be a problem. Not only would my sister be able to have nivo again, the onc shocked us by saying she'd likely start with taf/mek again (it kicked ass but caused a gr. 3 reaction, so it was a surprise that would be back on the table). Incidentally, apparently reactions experienced the first time around may not necessarily recur. Hope that helps if you are contemplating stopping!!! Best,


Thank you all for the replies! I'm intrigued by the idea of spacing out the wouldn't break my heart to not have to travel to Houston every three weeks, every four or five weeks sounds soooo much better.



Rock on Tex!  If you ever need someone to hang with on your frequent (and maybe less frequent :) ) trips to Houston, feel free to shout out.  We live right next to the med center. My husband works within walking distance of MD Anderson and often does walk back to work after scans (since he hates the price of parking there at MD Anderson :).

In terms of your dilemma, Celeste and Ed have all the knowledge and what data exists to date covered, but this question is what biostatisticians deal with who work on both early and all phases of clinical trial research.  Efficacy and Safety and the perfect dose and treatment time that doesn't kill you but is still effective and for how long:)

I have to admit, as much as i claim to be data driven and evidence-based the idea of going off treatment even with no evidence of disease would be anxiety producing, totally understand the anxiety.  I have no suggestions, just my solidarity in making these decisions in life without perfect data!

Jackie <3

Thanks Jackie! Sure, I'd love to meet up with you both! I'll post on here as I get closer to my next round and maybe we can set something up.


Sounds like a plan!  We would love to meet up if you get the chance!  The texas cohort of the MPIP group!

Jackie <3