September 28, 2017 at 3:18 pm #23206
I was diagnosed with stage III-B melanoma in the spring of 2010 and joined the stage IV club in the fall of 2011. My history has been documented in previous posts. I started Keytruda under expanded access for compassionate use in August 2014 and ended treatment in April 2015 after reaching NED following 13 doses of Keytruda. Scans every 3 months after cessation of treatment showed NED until the 2 year scan in May 2017. This PET scan at 2 years showed uptake in the left adrenal, which has always been a problem area. There was no change is size from previous scans so it was unclear if this was active melanoma or some sort of inflammation or some anomaly. A PET in August 2017 showed uptake and growth. Immediately rechallenged with Keytruda. Had 3 doses 3 weeks apart followed by PET scan (Tuesday – 3 weeks after previous Keytruda infusion) that showed no uptake, no nothing, so I am back to NED. Also had 4th dose of Keytruda and the current plan is to continue Keytruda for 6 more months with scans at 3 months and 6 months. Developing…
This is uncharted territory and I post this to give encouragement to others as well as to provide some information re the challenges, decisions, and uncertainties that may lie ahead. God bless all.September 28, 2017 at 6:53 pm #70177buffcodyParticipant
Thanks for posting. It certainly is uncharted territory for me having been found to be NED at the beginning of June after a year of Opdivo. I have had a 3 month later PET scan with same result, but I think I was going a little overboard with the idea that there was some kind of built in almost-for-life guarantee. I will continue to have brain MRIs (had it there in 2012) and full body PET scans for the indefinite future. How often? For a while, at least, every 3 months maybe moving on to 4. I have had a complete response, aka in remission, aka NED. And now for the watchful future. FrankOctober 1, 2017 at 5:36 am #70178MathewRParticipant My comment is why not push for earlier scans–every 8 weeks? I’d also consider CT scans over PET scans for a bit. CT will more accurately track growth. Continuing pembro is a good plan. Keep in mind that about 20 percent of patients have some form of success on ipi-nivo after having progressed on pembro. Me included. Lastly, I concur with Frank. I’ve not been NED and I’m thankful for it. I assume that my treatment, while durable at the moment, won’t last indefinitely. While I fear progression, I’ve accepted it as a potential–maybe even likely–possibility. I’ve seen a number of patients on these forums achieve the “joy/relief” of NED status and later appear devastated by progression.October 2, 2017 at 5:29 pm #70179 A couple of points. Just to be clearer, I am really getting a PET-CT scan. The uptake site manifested first as an uptake site on the PET without any anatomical change as would be detected by the CT. After a 3 month wait, there was a slight but now conclusive (barely) anatomical change visible in the CT The uptake site is gone and no anatomical growth – there had been previous scar tissue at this site. The pembro appears to have resolved the issue. Why not scan more frequently? Well, the issue appears to be resolved at least for now, and I do not want the increased radiation exposure from more frequent scans. The human immune system is complex including the ability of the immune system to adapt to immune therapies such a pembrolizumab and the ability of the melanoma to adapt to changes in the immune system. As such, progression is probably always a possibility unless the immune systems manages to get all of the tumor. Will post again in 3 months.October 3, 2017 at 12:38 pm #70180obtuParticipant Hi Saderdomer,
sorry but as a foreigner I have difficulties to understand in details about your therapy.
So, you have started with IPI/NIVO combo then switch to Pembro?
regards.October 3, 2017 at 3:37 pm #70181
Here is a link to a previous post that detailed most of my course of therapy. Probably should have included in my post above.
I have not done the ipi/nivo combo.October 6, 2017 at 4:58 pm #70182obtuParticipant
thanks a lot. I have just read it.January 2, 2018 at 4:02 pm #70183 Scanned PET-CT the day after Christmas. All clear so I am now NEAD for 3 months. It appears the pembrolizumab has done its job once again. I will continue treatment for another 3 months (2mg/kg every 3 weeks), scan, and then decide what’s next. So I have had complete remission (at least to the limits of detection) for 2 years, recurrence, rechallenge with pembrolizumab, and now 3 months of remission. No major side effects from the pembrolizumab.
Upon being diagnosed at stage IV, a physician told me that no one knows the future and to enjoy each and every day. This has proved to be sound advice. Every day is a gift from God to be used and enjoyed, and I will continue to do so.January 2, 2018 at 5:18 pm #70184MathewRParticipant
Amen to that! Awesome news–thanks for sharing and best wishes for the new year.May 19, 2020 at 8:52 pm #71217
As an update I am just confirmed as still NEAD by PET scan a little more than 2 years after completing a course of 13 treatments with pembrolizumab (Keytruda). Next PET scan in 6 months. Both the Dr and I are reluctant to go more than 6 months between scans at this point. I have documented my history in pervious posts including re-challenge with pembrolizumab after an uptake site was noted at the 2 year mark after completely responding to pembrolizumab.May 27, 2020 at 5:42 pm #71223RespmanParticipant
I was diagnosed 2 years ago with stage 4 and was put on Zelboraf and Cotellic. I have been NED for a year and a half and I’m grateful, but the side effects have been brutal. A couple of months ago I discussed with my oncologist coming off the meds indefinitely as long as I remained NED. Currently I’m scheduled for PET scans every 3 months with my first since stopping the meds next month. I finally feel human again, but I know this could be temporary. I try not to make many long term plans (especially financial ones), but I’m finally living again instead of waiting to die. If that lasts 10 years or 10 months it will be worth it.
Jim DMay 30, 2020 at 12:23 pm #71224Catherine PooleKeymaster
Sounds like you have your priorities lined up. Quality of life is so vital. I’m sorry you have had such a rough time with the BRAF drugs. I am hoping you have a long remission! Please stay in touch. You can also email me personally, email@example.com. Best wishes
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