Are there any other MK-3475's out there? How long have you been on it are how you all doing?

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3/23/2014 11:28am
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Replies: 11

Hi there,

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 died 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.

Laurie

Laurie-

Nice to hear that you're doing well!!! The news on PD-1 really seems encouraging so great to hear your story. I've done Yervoy and Interleukin but I have been following the PD-1. When I went Stage 4 last year I was leaning that way but my onc wanted to keep that in her backpocket.

I'm real interested in diet. I had dinner this weekend with a friend who oddly enough is an oncologist that specializes in melanoma. Went to gastropub which had me a little tense as though I'm nor raw diet...I go organic...limited animal protein (meat & cheeses). He thinks that's crazy in regards to recurring melanoma...no argument in health benefits but wouldn't associate "increased risk" from poor diet. Felt that lended itself more towards gastro cancers... Interesting convo...point is...I still think keeping body healthy impacts immune system...he said sugar is worst....processed foods...

Hi Laurie,

Thanks so much for sharing. My husband started on MK-3475 in Nov 2013 and has had great results so far. After 2 scans its essentially 'gone' or small enough that they cant see it. He only had the 1 node in abdomen area. While this news has been fantastic, of course my next question is - how long will it last? It is so encouraging to hear about people like you who have been on the drug longer term and continue to have good results.

He is in the phase 3 trial and is on 2 weekly infusions according to his body weight.

Thanks again for sharing and all the best!

Lisa (Aust) xx

Hi Anonymous - please tell me more about your story?  You mentioned reoccuring melanomas, I wasn't sure if you meant my 4 melanomas, or if you yourself had a few melanomas just like me?  Come to think of it...I haven't heard of anyone on here saying that they have had several melanomas.  I am starting to wonder if I am special somehow? 

But I know what I did...I had an addiction to being tan.  I started using tanning beds 3-5 times a week at 16 years old, and I did so year-round for 10 years, until I was 26 years old and got my first and deepest melanoma.  I had no idea I was in any way hurting myself.  I had even just quit my job and decided not to keep paying for health insurance because in my mind, I was young and didn't need it.  Luckily, my time limit to change my mind and sign up for Cobra health insurance had two days left before I couldn't get it.  Those two days saved me from having to pay about $70,000 for my surgeries at UCLA. 

I personally feel that diet is huge for my immune system.  I have always caught the colds and flu's that were going around.  If someone was sick, I got it.  That has just been my life as I've known it.  But with a diet change, it's a whole new healthy world for me.  I am not saying that diet has a specific link to melanoma, but to your body's ability to fight off any sickness. 

Yes, refined sugar and processed foods are just bad news.  I definitely agree and I try and stay clear of those items.  Everything I read says that sugar breeds cancer and that sugar is in most processed foods, even the foods you wouldn't think would have it.  So that right there is enough to make me step away from processed items with refined sugar. 

I would love to hear more about you?

Laurie

Thank you so much for the link Anonymous!  I always appreciate help.  I know natural sugar is needed and wanted by the body for energy.  So for me, I choose to eat fruit, preferably organic fruit, for that natural sugar.  It's the processed sugars and processed foods that I worry about.  :)

And don't you wish we all knew what it was we are doing that makes things better or worse.  Don't you wish we had those answers?  Being stage IV to me means that I want to do as many right things for my body as I can.  I try and read everything out there on what is healthy, what is not, what has been found to cure, what has not. 

I only know that I made a lot of changes with my diet when I was really sick back in 2003, and I no longer got the colds and flus, and I didn't get any new melanomas, and I lived free and healthy for several years after those diet changes were made.  All was well in my world until I started eating regular processed foods again.  Then I started getting sick monthly...and my melanoma metastisized.  So it was a clear choice for me, and one that really helped me to know I could fight and win this battle.  I just had to make better decisions for my body and give it the best shot I could.  That positive attitude that I could reverse this by making healthy changes is what has driven me.  And here I am...doing great and still living a great life.

so getting colds and flus is a sign melanoma may be spreading?

I only know what I feel has worked for me.  I was forced to look at my body and think about ways that I could help it...ways to fix it if possible.  I personally believe that our bodies are built to heal themselves...and I personally believe that I can help it fix itself.  And I feel that if my body can't fight off a little cold, how am I going to fight off something on a much grander scale, like cancer...?  These are the questions I asked myself and that is why I decided to do all I could to be as healthy as I could.  This is just my story and the choices that I have chosen to help myself.  :)

Laurie

Hi Lisa,

So sorry you and your husband are going through all of this.  But happy to hear that the trial is also working for him.  Where is he being treated?  Are you guys living in Australia and getting treatment there?  I visited Sydney a few years back.  Australia was always number one on my list of places I wanted to travel too.  I loved it, the accents, and the people very much.  :)

 I feel quite lucky that my melanoma waited so long to spread (since 2000)...or I wouldn't have had any real good options to chose from for treatment.  But I too wonder with each scan, what will be next?  I feel I am a very strong person and truly believe I can beat this...and then scan time comes, and the terror of those scan results becomes all consuming for a day or two.  Ughhh...we carry the weight of the world on our shoulders don't we...  I also wonder how much treatment is the right amount and how long is too long to be on it?  That is what I struggle with.

Big hug to you guys and thanks for sharing.  :)

Laurie

Hello All,

I have be on Mk3475 2 yrs 3 mos. I am a complete responder. I am wondering that same thing: How long should I stay on this drug. I do get side effects on the drug, so I would welcome the chance to get off the drug.

My doctor has not indicated whether or not  it was safe to stay on Merck 3475 after 2 yrs.

Has anyone heard anything from their doctors about staying on this drug for more than 2 yrs & the safety of it.

Thanks

Thank you for your response.  So were you signed up for MK-3475 for 2 years and then they decided to change you to no-end-date as well?  What is your story?  Did it work immediately for you, or did it take a few months of it growing to get it under control with partial recovery...and then when did full recovery happen for you?

I appreciate that MK-3475 has given me more of my life, but how much is too much?  I know we are the guinea pigs, so the doctors might not really know.

At this point I am no longer considered "progressive disease," and I am only "partial recovery."  So maybe I am asking these questions a little too soon, but I too would welcome the chance to be drug-free.

Laurie

I was a "complete responder" at my 1st 12 week scans. I had mets in both lungs, in leg, on chest. At my 2 yr mark on Mk3475, I just kept going. I know of a few patients at UCSF Medical Center who are NED.

Dr. Daud, the head Doctor over the trial has allowed them to stop the drug. Merck apparently has agreed to give these patients the drug again if they have a recurrence.

I sure would like to know if there are any trial locations that are also letting patients stop the drug if NED. I too worry how safe is this drug after 2 yrs. I still get side effects so it would be nice to stop if I could get the drug again.