PD1 drugs - things getting worse, then better?

Posted By
3/25/2014 6:46pm
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Replies: 3

Thank you to everyone providing their experiences on this site, it's been amazingly comforting and informative as I help my father combat this disease.

Has anyone had an experience with PD1 drugs where they has not been any progress during the first course of treatment (3 months) but then experienced later tumor reduction?

Thanks for any information you can provide.

Hi there Laru,

It took a while for my met node to react to the pd1.  They almost took me off the trial a few times because they were thinking it wasn't working and I should have the met node surgically removed before it caused more trouble.

My primary melanoma was in 2000, 2.0mm deep, upper right arm.  My melanoma metastesized to Stage IV 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 was able to get into the clinical trial for the anti pd1, MK-3475. It has been working great for me.  I started MK-3475 (highest dose - every 3 weeks) Oct 31, 2012...and it is now March 21, 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 liquified and now it has been shrinking by about 15% every 5 weeks that I scan.  My most recent scan was a couple days ago and 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 fulltime 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 this week in my hip and shoulder, but that subsided in a day or so. 

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 for me, because I have read some stuff that made me think twice about that.   I originally signed up for treatment for 2 years, but back in November they changed it to no end date.

In my online research of articles, it seems a lot of people have great responses in the first 3 months, and for me it wasn't until 6 months that the met node finally responded.  Is the pd1 having the same slow start for you?



Hi Laurie,

Thank you so much. Because it's a nivo/ipi trial, we'll need to decide whether to unblind or keep going with the same treatment. Wish they would approve nivo and MK 3475 already so we all don't have to be in the dark anymore about treatment options- here's hoping FDA approval comes soon.

I am on the nivo alternating with ipi  with randomization to take one or the other first.

I got the PD1 Nivo first 12 wk then Ipi for the next 12 wk.  The tumors just enlarged for 5 mo. Then seemed to flatten quickly in the last 4 wk of the ipi.  I was really worried for a while.

meg n