Can anyone tell me whether they have been taking pd1 drugs and how successful they have been?
I HAVE BEEN ON A MERCK PD1 TRIAL SINCE JULY 2013 AT DANA FARBER CANCER INSTITUTE IN BOSTON MASS.I HAVE BEEN A PARTIAL RESPONSE TO THE PD1 AND HAVE HAD VERY FEW SIDE EFFECTS .THE ONLY REAL SIDE EFFFECTS I HAVE SEEN ARE MY EYELASHES TURNING WHITE AND FLU LIKE SYMPTOMS FOR A DAY AFTER INFUSION -TIRED ACHY A LITTLE . BEFORE THIS TRIAL I WAS TAKING ZELBORAF AND HAD EXTREME SIDE EFFECTS ,SO THESE ARE EASY FOR ME TO DEAL WITH .
I've had success with pd1. My melanoma metastesized to a lymph node in my right arm pit in Sept 2012 at 39 yrs old. The scan revealed that met, as well as several other nodes in my other arm pit, behind my chest wall, wrapped around my heart, and a mass on my liver.
I started MK-3475 (highest dose - every 3 weeks) Oct 31, 2012...and it is now April 4, 2014 and i am doing great. I am at Dana Farber in Boston.
At the 3 month mark, all other large nodes shrank to normal and the mass on liver disappeared. But the met node was aggressive and doubled in size. At the 6 month mark, my met node blew up and died and now it has been shrinking by about 15% every 5 weeks that I scan. My most recent scan from a couple weeks ago showed my met node is now smaller than it was at the beginning of the trial, and nothing else showed up on my scan, so all is fantastic.
Side effects for me: Living a basically normal life. Still working full time and feeling good. Have nausea usually the first week after treatment and then some in the second and third week, but I have still never thrown up. Have the itchy rash on my chest, neck, and back of head, but it goes away in the summer months. I get a little fatigue, but really that is probably just from working and my social life. I just started getting joint pain a couple weeks ago in my hip and shoulder.
Otherwise all is great. I don't take any prescription medications and I try to eat mostly raw organic fruits and veggies to help my body stay healthy. No meat or dairy or refined sugars. I originally signed up for treatment for 2 years, but back in November they changed it to no end date.
Meet and talk to others about melanoma in our forums:
See also: History of the MPIP Forum
–CURE OM Forum
Or, visit the MRF Chat Room!
Submit your own patient story or read about the experiences of others.
Submit a memorial of a loved one to be posted on the MRF’s memorial wall.
Get updates about melanoma & the MRF’s work in research, education & advocacy.
Helpline: (877) 673-6460
1411 K Street, NW Suite 800
Washington, DC 20005
(800) 673-1290 Office
(202) 347-9678 Fax
The Melanoma Research Foundation (MRF) is leading the melanoma community to transform melanoma from one of the deadliest cancers to one of the most treatable through research, education and advocacy.
The Melanoma Research Foundation is a 501(c)(3) non-profit organization.