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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Lilylove414's picture
Replies 9
Last reply 1/21/2012 - 5:07pm

Alrighty! My surgery to remove the rest of my lymph nodes is Thursday, January 26th at 9am! Hoping I don't get lymphidema, but it would be a small price to pay if I do. I get a week of recovery and starting treatment February 6th at 9:30am. Matt posted on facebook for people to shave their heads in support. I said I'm not losing my hair! He said well...let's just see who does it then! Spending time with Matt tonight and looking forward to beating this in the face! God is definitely good! He always provides! Anywho, have a great and blessed weekend everyone! Lots of love!

If God is for us, who can be against us?

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Replies by: triciad, LynnLuc

anyone experience palms that get red and itchy with little red bumps and hives?? Driving me nuts...sore, skin peeling started on palms now on wrists and sides of fingers...been going on for over 3 weeks...I am going to endocrine doc on Tuesday....

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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OB Mike's picture
Replies 8
Last reply 1/21/2012 - 2:28pm

I am getting ready to start my first treatment with ipi. I have a lot of fears and questions, but my primary questions have to do with concurrent use of alternative immune stimulating therapies. Does anyone have experience with Naltroxone, intraveneous vitamin C, oleander extract aka Anvirzel? I am also curious about side effects of ipi, but most seem to say it is easy compared to past therapies?

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j.m.l.'s picture
Replies 2
Last reply 1/21/2012 - 2:23pm
Replies by: Donna M., scots

two tumors in arm, 4 prev removed. newest one on an artery. Surg. doesnt know whether it is on the artery or wrapped around it.

chemo did not shrink anything. most nodes prev removed but those damn mel cells are still lurkng around. Monsters arent they. Surg. says if mel is wrapped around he will leave it and then apply radiation. If lying on artery he could remove carefully. Scary to what can happen to my arm.

just dont need this in my life (65yrs)

To those w. lympedema concerns, I have it after 40 nodes removed. It can be managed. Use of a stocking daily and go for special lympedema  therapy. Its a commitment but worth it so your arm or leg doesnt get out of control. Unfort. you cant do the therapy yourself- you need the specialist.

thanks JML

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davidfromsingapore's picture
Replies 3
Last reply 1/21/2012 - 11:13am
Replies by: Ali, bdhf, deardad

I am sorry, but I am posting the same questions again.  I had 2 met removed via craniatomy and one via SRS.  Nothing in my body.  My oncologist at Mayo put me on Zelboraf.  My one remaining brain met is shrinking, and my last scans were clean.  I would like to know if there are patients out there who had brain mets and are on Zelboraf - like me.  How is it going?  What is your next step?  My side effects are brutal.  Loss of taste and hearing in left ear, general giddiness, loss of sight in right eye, and very tired all the time.  Docs don't know if it is due to drugs or disease (they think it is possible that I have leptomeningeal disease - meaning the cancer is attacking the meninges - or the lining of the nervous system).  I am 45 and before this I was pretty strong.  I am a runner and was running at least 20 K a week.  Now I can barely get out of bed soe days.  

So - any positive thoughts from NED brain mets and Zelboraf patients would be appreciated.  


Thanks, David

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” ― Albert Einstein

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anyone experience palms that get red and itchy with little red bumps and hives?? Driving me nuts...sore, skin peeling started on palms now on wrists and sides of fingers...been going on for over 3 weeks...I am going to endocrine doc on Tuesday....

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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bruski1959's picture
Replies 10
Last reply 1/20/2012 - 10:00pm

We are considering Yervoy treatment for my wife Jackie who has metastatic melanoma. Started on finger last March, which was amputated in May with good margin. Then spread to axial lymph nodes on same arm, which were removed in August. 2 were macro, 5 were micro, 6 had no melanoma. PET scan in November showed recurrance in same axial lymph nodes, bright spots on liver, and potential places to occur in lungs. PET scan at Mayo last week shows axial lymph nodes brighter, spots on liver are brighter, and spots in lungs have started to light up too.

We have done the paperwork for Yervoy co-pay assistance.

Have contacted our insurance company United Health Care and the specialist pharmacy, and Yervoy is covered, but not sure what co-pay will be until the oncologist writes a prescription.

First  question is the potential side affects sound pretty terrible, but oncologists we have spoken with have not seen the severe side affects, more the rashes, and treatment with prednisone helps alleviate the symptoms. Is this pretty much the experience of others who have taken Yervoy?

Jackie's oncologist mentioned that he has seen more issues with the 3rd and 4th infusions than with the 1st and 2nd infusions. Is this the experience of others who have taken Yervoy?

I have heard numbers like 20% co-pay, and I have heard between $60,000 and $120,000 for total cost of Yervoy treatment. The Yervoy co-pay program looks like you pay $50 per infusion, and they will pay maximum of $5000. Trying to figure out what actual out of pocket expenses are for this for planning purposes. What has been the experience of others with paying for Yervoy?

Saw something about not being able to use health care reimbursement funds for Yervoy. We max out our health care reimbursement, and last year ran out in August, due to the several surgeries and hospitalizations. Is that really true you can't use health care reimbursement to help pay for Yervoy copay?

Has anybody used Yervoy with GP10? If so, were results any better than those who use Yervoy by itself?

The oncologists we have spoken to indicate that it is better to use Yervoy sooner than later, earlier on in the disease process, that it takes longer to start working, but it also lasts longer. Can anybody comment on this?

Appreciate any advice or answers anybody can provide.



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Michelle's picture
Replies 1
Last reply 1/20/2012 - 8:45pm
Replies by: FormerCaregiver

My dad age 76 was diagnosed with stage IV melanoma cancer in November 2011.  He had it just in his lungs in November and now has it in his liver too.  He has now completed all the tests in order to determine his options of treatment.  Today he was given the following 3 options:

  1) Yervoy, which we were told has about a 20 to 30% response, 10% of patients have long term benefits  -  some side effects can include: colitis,

10%, hepatitis, itchy rash, irritation to liver,severe headaches, low thyroid, and fatigue.
  2)Temedor: 12-15% response.  Doc said that it is extremely unlikely that it will cure him.  As it is chemotherapy, some side effects can include nausea and vomiting, risk of infection, loss of appetite, and diaherria.
  3)Supportive Care: care to improve the quality of life.
My dad already decided that he will go with option 3 - supportive Care.  My dad has had Parkinson's for about 13 years now and I know it is wearing him down as his body has been declining every year.  He can still get around, but his legs have become much weaker and overall strength is much weaker.  He uses a cane and some days his legs just don't cooperate.  He does have good days though where he will walk a half a mile to a mile or so. 
I give this background because I'm thinking about trying to convince him to try the Yervoy, but wondering if I am being too selfish in not considering his fear of all the side effects of Yervoy.  The pharmacist made it sound like the side effects are definitely manageable.  Just wondering if because of his age and Parkinson's is he going to have a much tougher time at the side effects.  Does anyone have any experience of a loved one in this age category that has gone with the Yervoy treatment?
Thanks for any input you can provide.

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Anonymous's picture
Replies 8
Last reply 1/20/2012 - 8:16pm

I was recently diagnosed through a sentinel node biopsy with Stage 3a melanoma. My pathology was very unusual and most physicians I have dealt within this short time, have told me they "backed into" the diagnosis. As such, they are treating it as though it is melanoma. I had PET and CAT scans which were clean. My doctors at Sloan Kettering believe that I may be as well off with ultra sound observation every three months as with total lymph node removal. They are offering both options. Any thoughts? Thanks in advance!

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NYKaren's picture
Replies 2
Last reply 1/20/2012 - 4:25pm
Replies by: NYKaren, DonW


1) I just discovered what I believe is a new satellite, in my ear canal!   Has anyone else experienced this?

 While we wait for some Anti PD-1 trial that I fit the criteria for, Dr. Halpern is freezing all the mel on my face & I'm applying Aldera at night.  They are very concerned about halting the progression of satellites, but held off on the planned Temodar because the Merk trial only allows 2 prior systemic treatments...Now I don't know if this new development will change that. 

Called Dr. Wolchok about ear today, he said it's a matter for Dr. Halpern.  Dr. H. is out of town--I have app't with him for the 30th.  

My next app't w/Wolchok is Feb. 9.

2)  Dr. H made app't  for me w/one of the surgical derm. docs (right after I see him on the 30th.) to discuss injecting IL-2 into the primary and all the satellites.  I don't know anything about this treatment--the side effects of high dose IL-2 were awful and I wound up not responding.   Anyone know about this, and what the side-effects are?  Can't find anything on internet about it.

Last week I was cautiously optimistic because Wolchok said that if Merck would allow calipers to show measurable disease, i might get into that trial, and also that GSK is supposed to start an anti pd-1 trial without the current ipi arm.  Enough people have done ipi unsuccessfully...i think it's time--it's just more money in their pocket if/when their anti-pd-1 drug gets FDA approval.

Any advice/suggestions welcome.



Don't Stop Believing

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Patients on Vemurafenib Need Testing for RAS Mutations
Secondary Cancers a Concern

Nick Mulcahy

January 20, 2012 — Patients with advanced melanoma who are treated with vemurafenib (Zelboraf, Plexxikon/Roche) should be tested for RAS mutations, according to an editorial published in the January 19 issue of the New England Journal of Medicine.

A study that accompanies the editorial reports that RAS mutations frequently occur in secondary skin tumors that develop in vemurafenib-treated patients.

The testing is necessary because there is "potential for secondary tumor development" that arises from treatment with vemurafenib and other BRAF inhibitors, writes Ashani T. Weeraratna, PhD, from the molecular and cellular oncogenesis program at The Wistar Institute in Philadelphia, Pennsylvania, in her editorial.

These secondary skin tumors — namely, cutaneous squamous cell carcinomas and keratoacanthomas — are relatively benign, compared with melanoma, and are no reason to discontinue vemurafenib, said Dr. Weeraratna. However, testing will alert clinicians to which patients have RAS-driven secondary tumors.

The testing is important because patients with RAS mutations could also develop secondary cancers in organs beyond the skin, advised Dr. Weeraratna.

"If patients have RAS mutations they should be monitored closely for any development of cutaneous squamous cell carcinomas in all organs," she told Medscape Medical News.

"Although cutaneous squamous cell carcinomas are not deadly, these lesions can be life-threatening when they occur in other organs," Dr. Weeraratna writes in her editorial.

She discussed other potentially affected organs.

"Squamous cell carcinomas can potentially arise in any organ with a squamous epithelium, essentially a layer of flattened epithelial cells that line the basement membranes of organs. A squamous epithelium is found most often in organs where rapid filtration and diffusion is necessary, such as the alveolar lining of the lungs and the glomerulus (kidney). Thus, squamous cell carcinomas can be found in organs such as the lungs, cervix, and esophagus, and also account for a large proportion of head and neck cancers," Dr. Weeraratna explained.

Importantly, there is no evidence that vemurafenib triggers tumors in other organs. "It is as yet unclear whether the generation of squamous cell carcinomas in these organs, upon BRAF inhibitor therapy, occurs, but these data certainly alert us to that potential risk," she said.

MEK Inhibitors May Help

In this study of melanoma patients, the investigators sought to characterize the molecular mechanism behind the development of secondary skin cancers in patients treated with vemurafenib.

They admit that a skin cancer drug that causes other skin cancers is unexpected.

The development of cutaneous squamous cell carcinomas and keratoacanthomas "is the opposite of what would be expected from a targeted oncogene inhibitor," write the study authors, led by Fei Su, PhD, from Hoffman-La Roche Pharmaceuticals in Nutley, New Jersey.

In their search to understand this toxicity, the investigators analyzed the DNA of a sampling of these tumors and found a high rate of RAS mutations (21 of 35 tumors; 60%).

"Mutations in RAS, particularly HRAS, are frequent in cutaneous squamous cell carcinomas and keratoacanthomas that develop in patients treated with vemurafenib," write the authors.

"This study points out that BRAF inhibitors should only be used in patients who have cancers driven by BRAF mutations, and it raises the concern that cancers driven by RAS mutations (KRAS, HRAS, or NRAS) can be paradoxically activated instead of inhibited with this class of drugs," said coauthor Antoni Ribas, MD, PhD, in email correspondence with Medscape Medical News. He is from the division of hematology–oncology at the UCLA Medical Center in Los Angeles, California.

Why patients treated with vemurafenib have such a high rate of RAS mutations in these secondary cancers is not known.

However, the investigators performed animal-model studies that suggest that the development of RAS-mutation-driven secondary tumors might be prevented with a MEK inhibitor, another class of drugs. There might be "usefulness of combining a BRAF inhibitor with a MEK inhibitor to prevent this toxic effect" of secondary cancers, write the authors.

There has already been clinical investigation of this concept — a phase 2 study of the combination of the MEK inhibitor GSK1120212 and the RAF inhibitor GSK2118436 in metastatic melanoma.

That study, which was presented at the 2011 annual meeting of the American Society of Clinical Oncology, and reported at that time by Medscape Medical News, showed that the toxicity of the combination seemed to be lower than that of either agent used alone.

N Engl J Med. 2012;366: 207-215, 271-273. Abstract, Editorial

Medscape Medical News © 2012 WebMD, LLC
Send comments and news tips to


Authors and Disclosures
Nick Mulcahy

Nick Mulcahy is a senior journalist for Medscape Medical News and covers oncology. He was a recipient of a journalism fellowship from the National Press Foundation in 2010. Formerly, Nick was a freelance medical news reporter for 15 years. His byline appeared on,,, and many other Web sites. He previously reported for International Medical News Group (Elsevier), MedPage Today, and HealthDay. Nick is also the former managing editor of A graduate of the University of Pennsylvania, Nick is based in Philadelphia. He can be contacted at

Nick Mulcahy has disclosed no relevant financial relationships.

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Replies 7
Last reply 1/20/2012 - 9:50am

Hello, I wish I could say it is nice to be here but as I'm sure you all know it isn't. my husband was diagnosed this summer with melanoma and I am just devestated. It all started in the usual way with a mole he has had all his life beginning to itch and make small changes. I told him he needed to get it checked and hopefully removed and that would be that. We left just after that for a family camping holiday and got a call a week later saying they weren't sure what it was and had to send it off for more tests. That scared me alot and I just prayed that they would just call it a strange mole but another week later it came back as melanoma. A WLE and SNB was scheduled for the middle of September and we were told that there was only a 10-25% chance that it had spread to the lymph nodes so I felt quite positive about the results. Unfortunately both nodes they took came back positive. We had to see a different surgeon now in a city 3 hours away to talk about having all the nodes in the groin area removed and that was done in Nov. Thankfully they all came back negative. During this time to say I was a wreck is an understatement, all I could think of was cancer and that my amazing wonderful husband would be leaving me and our 2 boys and we would have to stand by and watch this horrible disease slowly and painfully take him. Slowly I began to regain somewhat of a normal life and thought process, I told myself he will be ok. Then we saw the oncologist and her resident, my husband decided against interferon, the cons of this treatment far outweighed the pros in our opinion, so now he is scheduled for scans and are doing the watch and wait thing. After talking to them I once again feel like we are going to lose him, I dream he find bumps and lumps or we are being told there is something in a scan. my question to all you amazing care givers out there is how do you manage this? You all seem so strong and capable.  I hear so many sad stories, and my deepest darkest fear is that we will be one of those stories soon. I almost feel like I am pre grieving, trying to prepare myself for what will come. 

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lhaley's picture
Replies 5
Last reply 1/20/2012 - 6:47am

I was told about a month or so ago that the tumor was shrinking.  Then edema set in.  Met today with the nuerosurgeon and options are to wait it out on the dex which could take months till the edema gets absorbed.  We agree that I have to get off of these steroids before my immune system is 100% gone.   The issue is the tumor is still there that is deep and the area of speech can be affected.   I've decided that I have to take my chance.   He showed me how there is a cleft to go in through and feels that it will be ok.  If he feels he can't get the entire tumor (after pathology is done again) then they could do a touch up with radiation.

They say that the amount of edema that I have is not common.  That tells them that I have had an excellent reaction to the radiation and that my immune system is still working.  

Date is Feb 3rd.  The other option was Feb 2nd but late in the day.  All I could see was I didn't want to be on GroundHog day.  Kept picturing the movie and it keeps going over and over and over........    Went with the 3rd.

They are trying to get me a little off of the steroids before the surgery. Maybe I can get a little sleep tonight!


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Bobman's picture
Replies 1
Last reply 1/19/2012 - 11:03pm
Replies by: lhaley

Greetings everyone. I just got a call from Kim K., and she just recieved her results from her last scan. NED!  Fantastic news from way out here on the island. She told me she had been trying to post this so everyone could see, and she has tried from several different computers, and has been having problems with the spam blocker alowing her to post. If anyone has info on how she can get around this, she will be able to fill in more details. Suffice it to say though, NED, for a year and a half now I believe she said. Hooray!  Congrats Kim. We are all thrilled at this news for you!



We are one.

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DouginVA's picture
Replies 1
Last reply 1/19/2012 - 7:49pm
Replies by: benp

In late December 2010 I was seen by a local dermatologist which promptly removed a rather large oozing lesion from my chest.  Within days the tissue was confirmed as melanoma and I was referred to UVA Medical Center in Charlottesville, Virginia for further evaluation.   Inside of 10 days I was seen by a surgeon who ordered up some blood work and a sentinel node procedure.  The following morning he would perform a wide excision to remove more tissue (increase the margins) and two lymph nodes were also removed from my arm pit.  Within a week I would be told no residual from the tissue and the nodes were negative—GREAT NEWS!  The waiting time and the time spent thinking was very brutal to my emotional wellbeing.


By August 2011 I had gotten multiple doctor visits (every 3 months) and all was looking good and I was feeling great.


The first week of October 2011 I noticed a “hardness” on my chest.  I contacted UVA with my observation and they wanted to see me ASAP.  Within an hour of being seen it was confirmed that the melanoma had indeed returned.  I was setup for some tests to include a brain MRI, full body CT scan, and various blood tests.  I was advised that you can expect more of the same once we get everything scheduled for you and a return visit to review all the results.  Yes indeed this meant more waiting and lots more thinking--UGHHHH.


I was mentally prepared for surgery until the surgeon advised me that they “see” some nodules in my right lung needing further study (more tests…more waiting).  We need to know what these “spots” are before we can proceed with surgery—a thoracic surgeon is brought in to the picture and a single biopsy later it is confirmed that my melanoma had indeed traveled to my right lung.  Yes you got it…lots more waiting and lots more thinking.  How do I tell this to my kids?


I now get referred to another doctor within the Oncology department to take a comprehensive “full-body” approach.  You got it…more waiting and more thinking.  Researching this type of cancer is a humbling experience and very much information overload.




My new doctor was very much ready to review my history, discussed treatment options, and helped to formulate our plan of action—Interleukin II (IL-2).  We were convinced that keeping the “spot” on my chest was an important part of our plan as it could easily be measured to document progress.  After multiple tests, more tests, and multiple doctor discussions: it was decided (1 day before getting admitted on 2 different occasions) that I was not a good candidate for IL-2.  We re-grouped and now set our sights on Yervoy a.k.a. ipi.  You got it…more waiting and more thinking.  Research at this point is depressing yet I am still trying to remain positive.  Bring on what you got—I’ve been ready to fight this for months!


Round 1 of ipi was a 90 minute walk in the park.  The staff was friendly and my family very supportive.  No noted side effects.


A great Christmas gift noted after only 18 days from getting Round 1.  The Spot on my chest is measured down in size (17%) in just 17 days (1 3/8” in diameter / down to 1-1/4”)—WOW!


Round 2 of ipi goes smooth—hooked it up and put it in.  No side effects noted and I feel very good about the positive progress—seen in days not months.  Doctor is very happy with progress!


I am sitting here a little less than a week from Round 3 and the spot on my chest that was once obviously showing through my shirts to being slightly larger than when I first noticed it 14 weeks ago.  Positive thoughts are much easier to come by and I remain very humbled.    




I continue to hold on to hope and to maintain a positive attitude.  I continue to fight this battle the best way that I can—I rest when it’s time to rest and I try to pay close attention to my body.  Best wishes to my fellow Melanoma Warriors as we poise ourselves to fight this awful disease!

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