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October 19, 2013 at 2:40 am #21634
Hello I currently on anti pd1 trial. So far all has been well70%shrinkage in all tumors . Just got my 3rd scan and no shrinkage and had a new one pop up in my adrenal gland? Has anyone had a 7month low in this drug?? Thanks I should have been sharing my experience this whole time.October 19, 2013 at 1:39 pm #62786 Can you tell us more about the trial you are on? Which Pd1 agent? Are you sure you are on it not randomized? (probably a dumb question) What have you tried prior? If you are having disease progression maybe you could try Yervoy next and try to get the benefit of both? Are you braf positive or negative?October 19, 2013 at 2:41 pm #62787 I have had over four melanoma surface spots cut out back in the early nineties . Last one in2006 Dec 2012 wasn’t feeling well had a lump on my right side under my arm. It grew rapidly up around my shoulder blade. I went to KU med center and they did a biopsies and found it was melanoma.
I decided after lots of research online to go to Md Anderson. I was diagnosed with stage 4 melanoma.
I am currently on Bristol Myers antiPd1 trial my team of doctors are amazing they have shrunk all my tumors 70%. My pain back in February was unreal the tumor under my arm was so large I was bed ridden with pain. I was kind of surprised when my scans came back no more shrinkage and the new tumor ? I know that they have many versions of this drug and I feel blessed to be on it. No side effects other than mild skin rashes and my arm hair wildly is turning white.October 19, 2013 at 7:24 pm #62788
Have you tried other therapies? Yervoy?October 20, 2013 at 12:48 am #62789 No prior drug treatments. Was wondering what kind of response anyone else has had with this drug?October 20, 2013 at 1:34 am #62790BNP68Participant I think that would be a little unusual to have a recurrance 7 months after start of treatment but probably not unheard of. Most of the data I have seen seems to indicate that the durable response his well over 12 months and it seems like many have not established a durable response time due to patients still going at the conclusion of the study.
Here’s one quote from a study
“Excitingly, responses were not only rapid, but were often durable, with approximately two thirds of responders maintaining responses for over a year and some patients continuing to respond until data cut-off.”
Good luck. Has the new met been biopsied? Maybe you have a false positive. Let’s pray for that.
BrianOctober 20, 2013 at 12:11 pm #62791
If is it a recur of the melanoma, you should discuss with your doctor another therapy. I’m thinking Yervoy, because of the good results they are having in the sequential trials where they do Pd1 and then Yervoy. Perhaps this would benefit you too. I hope this might be a solution. Let us know.November 3, 2013 at 9:18 pm #62792VioletaParticipant Hello to everybody. I have a question related to this drug. My sister is waiting to enter in a clinical trial with antibody PD1 (nivolumab). She finished on 16 Oct. Yervoy , but her melanoma seems to progress fast and I am impatient to see her beginning the trial with anti-PD1.
Does anybody know how long will take to respond to this drug (weeks, months)?
Egieselman, when did you see the first improvements?
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