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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Anonymous's picture
Replies 1
Last reply 11/25/2013 - 9:31pm
Replies by: Bubbles
Safety, Efficacy, and Biomarkers of Nivolumab With Vaccine in Ipilimumab-Refractory or -Naive Melanoma


J. Clin. Oncol 2013 Oct 21;[EPub Ahead of Print], JS Weber, RR Kudchadkar, B Yu, D Gallenstein, CE Horak, HD Inzunza, X Zhao, AJ Martinez, W Wang, G Gibney, J Kroeger, C Eysmans, AA Sarnaik, YA Chen

Research · November 21, 2013


Nivolumab Active in Ipilimumab-Refractory Advanced Melanoma

  • "In this 90-patient phase I study, nivolumab had a response rate of 25%, with median duration of response still not reached at 8 months. Response rate was identical, regardless of prior ipilimumab treatment. PDL-1 staining was associated with but was not necessary for response." - Richard Bambury, MD
  • The findings demonstrate clinical activity of nivolumab in patients with ipilimumab-refractory or -naïve metastatic melanoma, whether or not they received a multipeptide vaccine.



Nivolumab, a human immunoglobulin G4-blocking antibody against the T-cell programmed death-1 checkpoint protein, has activity against metastatic melanoma. Its safety, clinical efficacy, and correlative biomarkers were assessed with or without a peptide vaccine in ipilimumab-refractory and -naive melanoma.


In this phase I study, 90 patients with unresectable stage III or IV melanoma who were ipilimumab naive and had experienced progression after at least one prior therapy (cohorts 1 to 3, 34 patients) or experienced progression after prior ipilimumab (cohorts 4 to 6, 56 patients) received nivolumab at 1, 3, or 10 mg/kg every 2 weeks for 24 weeks, then every 12 weeks for up to 2 years, with or without a multipeptide vaccine.


Nivolumab with vaccine was well tolerated and safe at all doses. The RECIST 1.1 response rate for both ipilimumab-refractory and -naive patients was 25%. Median duration of response was not reached at a median of 8.1 months of follow-up. High pretreatment NY-ESO-1 and MART-1-specific CD8(+) T cells were associated with progression of disease. At week 12, increased peripheral-blood T regulatory cells and decreased antigen-specific T cells were associated with progression. PD-L1 tumor staining was associated with responses to nivolumab, but negative staining did not rule out a response. Patients who experienced progression after nivolumab could respond to ipilimumab.


In patients with ipilimumab-refractory or -naive melanoma, nivolumab at 3 mg/kg with or without peptide vaccine was well tolerated and induced responses lasting up to 140 weeks. Responses to nivolumab in ipilimumab-refractory patients or to ipilimumab in nivolumab-refractory patients support combination or sequencing of nivolumab and ipilimumab.

Journal of Clinical Oncology
Safety, Efficacy, and Biomarkers of Nivolumab With Vaccine in Ipilimumab-Refractory or -Naive Melanoma
J. Clin. Oncol 2013 Oct 21;[EPub Ahead of Print], JS Weber, RR Kudchadkar, B Yu, D Gallenstein, CE Horak, HD Inzunza, X Zhao, AJ Martinez, W Wang, G Gibney, J Kroeger, C Eysmans, AA Sarnaik, YA Chen


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Julie in SoCal's picture
Replies 4
Last reply 11/27/2013 - 2:16am
Replies by: Julie in SoCal, Janner, Anonymous, POW

G'day friends!

Here's the situation: I have 3 possible intransit mets near my SNB scar.  I will be seeing a Dermotologist/dermopathologist next week in Bangkok (I'm ab American, but I live in Northeastern Thailand).  My plan right now is to have the Dr biopsy (punch or WLE ) the lumps.  I would really like to know what these things are sooner, rather than later.

My questions are: Are there any reasons I should'nt I have the chunks tested here in Thailand (at the top hospital)? I know that labs can goof, lose samples and what nots. And I figure this can happen anywhere.    If I have it tested here, is it possible to have another dermopathologist test the same chunk? or will it be destroyed in the process? 

I'm asking this, because I'd rather be seen by my Mel Expert Dr. but I'm in Thailand and he is not.  Sigh.  I'm going to the US in late Jan (coincidently for my 5 year scans) and don't have the means to go now.  But at the same time, I want to do what is best. If the biopsy comes back Mel, I'll figure out how to get back home, but I don't want to go to the US early if it's not. Does this make sense?

Thank you again, Friends!



Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017)

Stage 3a 2017 NSCLunc Cancer VATs; Carboplatin & Pemextred;  radiation

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Julie in SoCal's picture
Replies 6
Last reply 11/25/2013 - 3:30am
Replies by: Julie in SoCal, vivian, MattF, Anonymous, SABKLYN, POW

Hi Friends!

It's been awhile since I've posted.  Normally I post in the new year, after I've had my yearly scan.  For the last 4 years I've posted that everything has come back normal and we all do the happy dance.  

Today however, I'm writing to ask your advice.  

Here's the situration:  I'm currently living in Thailand.  I'm 5 years post surgery for a melanoma on my left hand. I had a WLE and then SNB which found one axilia  lymph node with microscopic melanoma.  I went on to have the rest of the alillia lymph nodes removed. : Stage 3a. From there I had a month of High Dose Interferon, and then a year of GM-CSF (14 days on, 14 days off).

Up until now, I've not had any bumps or lumps or funky things near any of my WLE or SNB scars, although I've had many "funky things" removed.  But they've always been atypical.  However, 4 weeks ago I noticed a small raised lump near my SNB scar under my elbow.  Then a few weeks later I noticed another small bb sized lump near the other one.  Now today I find I have another lump closer to my arm pit,  

None of the lumps are darkly pigmented or very large (under pencil eraser size).  However the first one, is asymetrical, raised and unevenly red and tan colored.  The other two are not colored at all, just raised.  And of course they are near my SNB scar (the SNB spot that was negative).

Ok now my questions: obviously I will have a Mel Dr look at these three bumpy things.  My question is how soon should I do this?  I'm in Thailand, not near a medical center with any kind of expertize in Mel.  However, I'm going back to the US, for medical checks and PET/CT scans in early Feb.  Should I wait?

What do intransits look like? If these things are intransits, how quickly should I get myself to my Mel Dr? How fast does Mel spread?  


Thank you friends!



Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017)

Stage 3a 2017 NSCLunc Cancer VATs; Carboplatin & Pemextred;  radiation

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paul Lyons's picture
Replies 4
Last reply 11/26/2013 - 6:56pm


Hello. This question is addressed to those who developed rashes and scalp itches from taking Zelboraf. After a week I developed a rash that covers much of my body, but my scalp in particular is causing crazy itching. My doctor put me on 40mg Prednisone. Are there are topical solutions that have worked for people, or suggestions about ways of relieving scalp itch -- so far I'm just scratching my head about it.

A good weekend to all,



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dolphin5's picture
Replies 1
Last reply 11/23/2013 - 2:08pm

We have tried them all, I think.  Low fiber, BRAT, chicken soup you name it I have cooked it for her.  No sugar, no milk, no red meat, no spice etc.  So, now the doctor has increased her steriods to six a day for the next six days.  Still diaherra, weak but she did say I THINK I am feeling a little better.  So, now I am looking at yogurt.  I cannot find anything that says NO.  Has anyone that is on Yervoy tried yogurt to help with diaherra?  I want to thank all of you that responded to my last post.  One note.  As far as for my wife, BioChemo was nothing like the side effects of Yervoy but if it works, well we will get thru this.  Thanks again.   

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Brendan's picture
Replies 6
Last reply 11/27/2013 - 4:22am
Replies by: Mat, Brendan, Anonymous, POW, awillett1991

Hi Everyone,

[I posted this on MIF as well]

I have not posted in a while but I continue to read daily.  After Craniotomy #2 in June I enjoyed NED status for about 4-5 months.  I recently had a brain MRI and a chest, abdomen, pelvis CT.  The brain MRI looks good (no signs of anything new and surgical cavity continues to improve).  Unfortunately, two new mets were found in my lungs (2mm in left lung and 16mm in right lung).  
The appointment was Friday at 5pm so I will have to wait out the weekend before anything happens (phone calls, planning, etc.).  I am UPenn in Philadelphia and my doctor is a melanoma specialist.  It might be difficult for me to get into a PD1 trial because I have been on some type of steroid since Feb 2012 (now on prednisone 5mg).
Here is my melanoma history:
Sept-Stage I-left ear-SNLB negative
Sept-Stage IV-left lung (23mm met)-NED after lung surgery-then ipi.  
January-ipi leads to hypopituitarism (still NED)
June-brain met discovered
July-Cyberknife for brain met #1
Sept/Oct-second round of ipi 
November-Crani #1
April-brain met recurrence
May-GammaKnife for brain met recurrence 
June-Crani #2-Gliadel wafers left in surgical cavity
November-2mm met (left lung) and 16mm met (right lung); normal LDH (138)
My only mutation is P53
So ... Here were the options we briefly discussed:
Goal #1 is to find find a PD1 trial.
Other possibilities:
-surgery on right lung
-radiation/ipi combo (but doc is not sure about round 3 of ipi)
-Ipi + IDO (new immuno) Phase 1 trial (I just heard of this one)
Going into this appointment, I was ready crani #3 (going for JAG's record) so this was quite a curveball.  Thanks for reading.  Any suggestions would be appreciated.  
Happy Thanksgiving!

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Cgillett's picture
Replies 3
Last reply 11/24/2013 - 11:23pm
Replies by: Cgillett, tasjacques, POW

Hi my name is Carol and my brother has stage IV metesatic melanoma with no skin lesion. The tumors have been very aggressive and are in the peritonium and lymph nods. He has been through bio chemo with il2 and then yervoy! Nothing was working . He is a nras not braf which has limited his treatment options.   He was blessed to be accepted into the Merck trial drug. The first 3 treatments were fantastic. Little side effects  and the aggressive tumor was shrinking rapidly.  He's voice was stronger every day his skin was back to normal no more flaking, he could sleep and eat.  Things looked so so promising. His fourth treatment was a week and a half ago and suddenly his voice was getting weak and he feeling bad again.  He's stomach is beginning to grow again and he is scared and very down.  It seemed so positive and now right before the holiday and 1 week from his scan we feel uncertain and slightly worried. Does anyone have any information or experience with the pd1 working so well then just seemingly stop working instantly? I would be gratful for any insight that I could share with  my brother and family.  For all of the warriors fighting this monster, you are my heros and my prayers are with you daily.  Your battle is not for the faint of heart and each day is a victory. 

God Bless and In Jesus Name,

Carol G.

Sister Warrior

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cep3700's picture
Replies 8
Last reply 11/29/2013 - 7:35am

Hi Everyone,

I have posted a few times about my issues with getting all of my mothers paperwork in order from multiple dr's and trying to get it all to MD Anderson. My mother is getting worse by the day. She has multiple large brain tumors and just finished her WBR. We were supposed to start Zel treatment for her cancer in her abdomen, spleen, lungs, ovaries... Her stomach swells more and more each day.... She was supposed to have the Zelboraf by today, but we went to the office, and THE DR HASN'T EVEN ORDERED IT!!!! 

I cannot wait any longer, I have to get my mother into MD Anderson ASAP. 

Does anyone know anything about the MD Anderson Emergency Room? Is it only for current patients? We have our paper work sent into them, but still waiting for an appt with an oncologist... we have been waiting 3 weeks. Im scared that if I dont get her there soon it will not be good, and then I will blame myself. 

Should I just take her to the MDA ER? Anyones advice will help! I feel so helpless!

Thank you all,


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MattF's picture
Replies 17
Last reply 11/25/2013 - 1:12am
Replies by: MattF, Mat, casagrayson, POW, awillett1991, BrianP, ecc26, Anonymous, Tina D, G-Samsa

Well the medical oncologist just emailed me ...

after PET scan had found 2 hypermetabolic nodes and 4 suspisious bone foci 

I was ready to have my surgery team go for surgery of the nodes in neck (2nd dissection)

but the oncologist said he thinks surgery will not be any benifit and just more trauma on area. he said there were enough "other" things on PET to suggest metastasis....thicking of pituitary stalk, multiple bone foci and two lymph nodes.

He wants me to come in asap and go over what course of systemic treatment is best. He leans toward the BRAF Inhibitors....


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awillett1991's picture
Replies 11
Last reply 12/7/2013 - 9:41pm

After cardiac surgery in Sept I went on Dabrafenib. Then added Mekinist. I could not tolerate the Mekinist so I went back to just Dabrafenib.  Been on it 8 wks .  

Today my onc said it was so clear I was responding and he was thrilled. I even have a patch of vitiligo which he said they have seen with dabrafenib or could be the Ipi I finished a year ago or a combo of dab and the anti pd1 doses I had, who knows? Anyway, just thrilled and thankful to God!


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Tina Botes's picture
Replies 3
Last reply 2/17/2014 - 2:01pm
Replies by: ukritam, Tim--MRF, fortiz

My husband was diagnosed with stage IV melanoma two weeks ago after a large brain tumor was removed. The tumor was 6cm x 5.3 cm x 5.2 cm and was a metastasized melanoma. What started out as suspected depression 8 weeks ago turned into a nightmare roller coaster ride.

The tumor was removed completely and a PET scan last week showed no other tumors - it did show however that he has Polycystic Kidney Disease (which explained a lot of his health problems). His kidneys are both significantly enlarged and misformed with multiple cysts, he also has cysts in his liver and spleen. His mitral valve is no longer functioning 100% and and and... Within a week he came face to face two enemies! Either one of the two will kill him. The oncologists though aren't even bothered by the PKD. I suppose melanoma is a bit more urgent than the fact that his kidneys will fail in a few (5 - 10) years.

He was at the dermatologist yesterday. The dermatologist took two skin shavings, but he said there is nothing even remotely resembling a primary tumor. We will have the results for the skin shavings tomorrow, but I suspect they will be clean since this is what the dermatologist said.

My question is really this: the oncologist recommends a single SRS session in two or three weeks and then nothing - just scans every three months. It feels so unsafe! They say without the SRS the brain tumor will be back in less than 6 months, with the SRS it can be longer. Shouldn't the treatment be more aggressive? Since the melanoma spread through his blood, shouldn't we try to do something more than wait?

I know there are other South Africans on this forum - please can you tell me who the oncologists are that know melanoma?

My hubby is 51 going on 30 - he has always been energetic and adventurous. Four weeks after his craniotomy I'm fighting to keep him off his motor bike. He still had staples in his wound when he was back on the driving range to check if his swing is still OK.






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wilsonjm2003's picture
Replies 7
Last reply 11/22/2013 - 4:50pm
Replies by: wilsonjm2003, Tim--MRF, ecc26, Gene_S, Anonymous, Tina D, melissa ann

My wife was recently diagnosed with Stage IV melanoma (the initial diagnosis was in February 2013, following a biopsy of mole on her scalp).  She has already had three surgeries (sentinel node biopsy in March; full lymph node excision of left neck in May; and excisional biopsy of lymph node in right neck in November) and four does of ipilimumab (10 mg/kg) as part of a clinical trial.  We (mostly I) are obviously devastated by this news, but trudging forward to identify the best next treatment.  We are currently considering interleukin-2, trying to enroll in a trial for PD-1, or sticking with ipilimumab even though her cancer has progressed since she was treated with it (although this is the lowest of our options).  Anyone in a similar situation have any thoughts on experience with IL-2, PD-1 (nivolumab) or Yervoy (ipilimumab)?


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Maureen038's picture
Replies 12
Last reply 12/7/2013 - 8:04pm


  POW wrote a very valid post on the importance of the threaded archives. All patients and caregivers deserve an answer to whether its possible to bring this back or not. It is critical to all of us and every effort should be made for it happen. We deserve an answer from you.


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CasieLV's picture
Replies 2
Last reply 11/20/2013 - 10:28am
Replies by: SABKLYN, Germer

Hi all,

I have been cancer free for 20 months and at my recent dermatology check up I had to get a mole on my back removed. I am waiting for the biopsy results to come back. How do you deal with the stress and anxiety of the fear that your melanoma might come back?


Casie, melanoma stage 3 survivor and co-owner of Wear Awareness

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Alli's picture
Replies 3
Last reply 11/25/2013 - 6:09pm

Anybody still out there?? It's been a while.

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