MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Ali's picture
Replies 17
Last reply 12/19/2012 - 9:07pm

Just wanted to let you know how things are going for me.  I am happy to read some good reports from a lot of you.

A brief history:

3b 2007, 9 months of interferon

Feb 3c 2011, surgical excision (there weren't as many clinical trials out there for in transit lesions at this time, dang it!) watch and wait

Jan 2012, routine scans show multiple subqs, liver lesions, bones lesions

Jan 2012, radiation to femur and ichium

Feb 2012, high dose IL-2.  All 6 weeks.  Mixed response.  Many tumors gone by the end, many new tumors found in...

June 2012, 100ish subq tumors, 25 brain mets

June 2012, IPI and Temodar.  Within days tumors obviously shrinking.  Diarrhea also within days.

Sept 2012 scans show no brain tumors, only 4 tumors left in the body.  I only had one dose of IPI because of diarrhea, continuing on Temodar

Nov 2012 scans show resolution of one tumor, growth in the other three

My first option was an Anti-pd1 trial.  Just got back from Oregon trying to get into the BMS phase 1 comparing those who have had IPI and those who haven't.  i was rejected!  Because I couldn't finish all my doses of IPI (diarrhea).

This is lose-lose.  I would have responded, and they could have marked that response on their charts.  So I think we will radiate a couple of these and see if my immune system can pick up on the remaining tumors.  If that doesn't work we will try something else.  I am also BRAF positive (luckily), but I am trying to get as much immune response as I can before I go that route. 

Has anyone gotten into a pd1 trial after taking IPI (other than this one of BMS that I know they won't let me in)?  Any guesses on when this drug will be approved, are we talking years and years?  If we ever see it as compasionate use, will those who have a braf mutation be able to use it as compassionate use, even though there is that other (zelboraf) option out there?

This is a crazy journey.  So grateful to spend another holiday season with family.  Hope there are lots more to come for all of us.

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sharmon's picture
Replies 15
Last reply 12/18/2012 - 10:02am

The Merck Anti pd 1 trial is allowing the tumor in his lung and side to enlarge, the pain to increase, and the anxiety to rise. This is less than half way through the trial and no one seems concerned. They are staying the course of the the third infusion on the 26th . They are saying it is too soon toknow for sure if it is growth or inflamation. Please pray this works like it is designed .

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nsabel's picture
Replies 6
Last reply 12/23/2012 - 12:51pm
Replies by: nsabel, POW, Janner, Josh

My father had an initial consultation with his medical onoclogist who recommended that he start Temodar  immediately and discontinue it in 2 months if there is not a positive response. If Temodar is unsuccessful  he would then start Abraxane which the Dr liked better than Taxol for him because of the lack of steroids ( he has type 2 diabetes).  If that doesnt work he would go on Zelboraf. The Dr indicated that we should try everything else first because Zelboraf is most effective if combined with MEK inhibitors but this combo has not been approved yet so we need to hope that it gets approved by the time my dad needs it. Dr. said that Zelboraf is less effective when its used on its own or when the MEK inhibitors are added later.

Does this sound right? Has anyone had any success with Temodar or Abraxane? 

Dr was skeptical that he could take part in clinical trial due to previous kidney transplant and current immune suppression to prevent kidney rejection. 

Also can someone walk me through difference between protocol and off-protocal treatement? when are decision made to try one or the other?



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Josh's picture
Replies 26
Last reply 7/21/2013 - 3:50pm

Hello All,


I'm considering one the Dr. Rosenberg adoptive cell therapies offered at the NIH that probably many of us have heard about. Both my current oncologist at Sloan Kettering and my previous one at SDSU say that Rosenberg's adoptive cell therapy trials are the best clinical trials out there right now, however, I've noticed on this forum that other than Warren, nobody has good things to say about the longer-term benefits of these trials. To be clear, I haven't yet had the blood test to see if I qualify for one of these trials and I know that they offer many different trials, but Merk's anti pd-1 drug isn't working for me, so I need to decide on a next step. Considering that Dr. Rosenberg has been doing these trials for a very long time, I'm asking to hear from some long-term survivors or friends/families of long-term survivors. There are lots of anti pd-1 NED folks on this forum, but any Dr. Rosenberg NED's out there? If not, does anybody have opinions why my two great oncologists like these trials so much?  Thanks a lot, everyone!  

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Anonymous's picture
Replies 1
Last reply 12/16/2012 - 3:54pm
Replies by: Josh

Do any of you know if being on antibiotics for an infected surgical incision will disqualify you from Merk's Anti-pd1 trial?   My boyfriend is about 5 days through the 10 day cycle of antibiotics, But the incision site is still draining and has pus, although it's not red or inflamed.    He is due to meet with Dr. to assess him for a trial of anti-pd1 for people who progressed after yervoy, and im worried having an active healing infection, and being on antibiotics will disqualify him...even though he only has another 5 days or so of the antibiotic.  I'm also worried that having a prior bowel obstruction surgery will disqualify him.  Any opinions would be greatly appreciated. Thanks in advance

"Give thanks in all circumstances"

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NYKaren's picture
Replies 6
Last reply 12/20/2012 - 11:15am

Does everyone on Z use sunscreen of SPF 30 ( or higher) on all exposed areas even in the winter? What about on rainy days?

Don't Stop Believing

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kellygrl's picture
Replies 5
Last reply 12/16/2012 - 2:25pm

Just a quick story from a friend  who works on a cardiac floor, she was with a patient yesterday who is on Zelboraf, had 4 brain tumors, Gamma Knife & now brain mets are gone! She continues on Zelboraf for lung and liver mets, but she is doing great and was diagnosed 7 yrs ago (primary was melanoma on leg) and is 79 yrs old!! Can you believe it!?

My husband is going on 7 mos of Zelboraf and 13 brain tumors still shrinking as of Nov! :) 

Wishing you all a holiday miracle!


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Vermont_Donna's picture
Replies 14
Last reply 4/20/2013 - 10:23am

Hi everyone,

I havent checked in here in a long while...I am 22 months NED after 4 doses of 3mg/kg Yervoy in a clinical trial. I feel so blessed after many treatments and many side effects endured over the last six years. I am however dealing with some cardiac issues (unrelated to melanoma) after having an acute stress (takot subo cardiomyopathy) heart attack in April of this year. i am no longer working and cardiologist's orders are to take better care of me!

 I hope to have time now to check in here on a more regular basis!

Happy Holidays!

Vermont_Donna, stage sa

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JerryfromFauq's picture
Replies 2
Last reply 12/15/2012 - 7:49pm
Replies by: NYKaren, Vermont_Donna

As some of you may know, our much loved and respected Jane from Maine was in an horrific automobile wreck in October and barely escaped death.

   She is still under the weather with extreme pain and finally receiving an MRI on her neck wednesday.  (Her car was totalled by a hit & run drunk driver and ehe Martha Washington Trauma Center sent her on the way vomiting without even discovering that she had broken ribs and more.)     

This wonderful lady that has helped so many of us asks for our prayers in her healing.  She just had two /FNA's on spots seen in her latest scans and they finally came back not showing Melanoma, so she has made it for 6 years NED since her successful IL-2 treatments.

I'm me, not a statistic. Praying to not be one for years yet.

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POW's picture
Replies 1
Last reply 12/15/2012 - 12:27pm
Replies by: kylez


I found a Youtube video of Dr. Suzanne Topalian discussing the preliminary results of the Phase 1b clinical trial of BMS's anti-PD-1 antibody MDX-1106/BMS-936558  in June 2012.

Basically, 70% of patients had adverse events, most common events (~50% of patients) were fatigue, rash, and diarrhea.

For melanoma patients (n=96) 28% had either a partial or a complete response and an additional 6% had stable disease for at least 6 months. Of 31 patients that responded 20, were still responding after 1yr.

View the entire presentation at 

Topalian Youtube video ASCO meeting June 2012

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Is anybody on a combination drug treatment Yervoy(Ipilimumab) and Sylatron(Interferon) similar to the clinical trial NCT01375842 ? Wondering what the side effects are like.  Thank you for your reply.

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Is anybody on a combination drug treatment Yervoy(Ipilimumab)  and Sylatron(Interferon) similar to the clinical trial NCT01375842 ?  Wondering what the side effects are like.  Thank you for your reply.

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SidneyGracie's picture
Replies 5
Last reply 12/15/2012 - 9:42am
Replies by: awillett1991, POW, Anonymous, jim Breitfeller

Are there any clinical trials specifically for this gene mutation?

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Are there any clinical trials specifically for this gene mutation?

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Angela C's picture
Replies 5
Last reply 12/18/2012 - 3:03pm
Replies by: TSchulz, aldakota22, POW, Swanee

Hey everyone.

Just wanted to put an update out here that I started on a new trial this week. It's a MEK and PI3K inhibitor trial. The drugs are MEK162 and BMK120. I'm in the trial at Massachusetts General. Yesterday was my first day of the trial. I'm already experiencing some vision side effects, which is a little concerning, but the doctor said that my body will adjust to the medicine as I continue to take it and the vision should get better. I feel like I have some light sensitivity, but they said it's most likely fluid buildup behind my retina. Eye side effects are a well known issue with these drugs and I'm seeing an eye doctor ever one or two weeks.

Does anyone out there have experience with a MEK and PI3K trial? I'm not sure that there have been a whole lot of people on these trials yet for Melanoma.


Be kind, for everyone is fighting a great battle. -Plato

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