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November 23, 2013 at 3:49 pm #21682BrendanParticipant
I have not posted in a while but I continue to read daily. After Craniotomy #2 in June I enjoyed NED status for about 4-5 months. I recently had a brain MRI and a chest, abdomen, pelvis CT. The brain MRI looks good (no signs of anything new and surgical cavity continues to improve). Unfortunately, two new mets were found in my lungs (2mm in left lung and 16mm in right lung).
The appointment was Friday at 5pm so I will have to wait out the weekend before anything happens (phone calls, planning, etc.). I am UPenn in Philadelphia and my doctor is a melanoma specialist. It might be difficult for me to get into a PD1 trial because I have been on some type of steroid since Feb 2012 (now on prednisone 5mg).
Here is my melanoma history:
Sept-Stage I-left ear-SNLB negative
Sept-Stage IV-left lung (23mm met)-NED after lung surgery-then ipi.
January-ipi leads to hypopituitarism (still NED)
June-brain met discovered
July-Cyberknife for brain met #1
Sept/Oct-second round of ipi
November-Crani #1 (NED after surgery)
April-brain met recurrence
May-GammaKnife for brain met recurrence
June-Crani #2-Gliadel wafers left in surgical cavity (NED after surgery)
November-2mm met (left lung) and 16mm met (right lung); normal LDH (138)
My only mutation is P53
So … Here were the options we briefly discussed:
Goal #1 is to find find a PD1 trial.
-surgery on right lung
-radiation/ipi combo (but doc is not sure about round 3 of ipi)
-TIL at NCI
-Ipi + IDO (new immuno) Phase 1 trial (I just heard of this one)
Going into this appointment, I was ready crani #3 so this was quite a curveball. Thanks for reading. Any suggestions would be appreciated.
BrendanNovember 23, 2013 at 7:36 pm #63036Catherine PooleKeymaster
Since you’ve had 2 rounds of IPI than a PD1 trial may be difficult to find, the IPI Refractory trials by Merck are closed. The BMS PD1 may be recruiting but they have no cross over to PD1 but I will check for you.
Other option is IPI and radiation. Can the nodules be removed surgically? The ADC trial at Nashville’s Sarah Cannon may have openings as well as other trials there, that’s all they do there. We have travel/lodging scholarships if that is an issue.
You might check out the IL21/Pd1 trial:
don’t see anything that would exclude you. http://www.bms.com/studyconnect/Pages/ProtocolPage.aspx?govid=CA220-008,NCT01629758
I hope this helps you Brendan, you’ve have a rough time and it is high time things got better for you. Feel free to email me personally for further assistance:
firstname.lastname@example.orgNovember 24, 2013 at 11:58 pm #63037Catherine PooleKeymaster Another study that doesn’t say prior IPI is an exclusion is the PDL with Genentech/Roche, it is a phase 1 trial in many locations: http://clinicaltrials.gov/ct2/show/NCT01375842?term=melanoma+pd1&rank=10
go to clinical trials.gov and put Pd1 and melanoma in the search. Then try calling the locations nearby. I will check this week for more openings.
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