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 11/8/2016 - 4:37pm
Replies by: debwray

hello everyone. i am wonderign if anyone has any info about choosing to take out sentinel nodes only during CLND to reduce chance of lymphodema ?  my husband has a deephip lymph node which we are told is sentinel.  because he is concerned about lymphedema, his surgeon is suggesting only takeing out the deep hipsentinel  lymph node robotically(as the most potentially dangerous one ) and leaving the surrounding basin ones alone to reduce chance of lympodema .  any thougts / comments woudl be very much appreciated. also  if this proves positive, would this still qualify him from stage III  clinical trials?  thank you kindly

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noisy77's picture
Replies 8
Last reply 11/8/2016 - 12:12pm

Hello - 

Just wondering if anyone has acral lentiginous melanoma ?  How did you approach treatment? 

My mom has stage 3c acral lentiginous melanoma of the big toe.  She just completed radiation of the groin and curious to how others approached.

Thank you.



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jennis3b's picture
Replies 1
Last reply 11/7/2016 - 5:25pm
Replies by: debwray

Hi friends,

I have an appointment Monday with Dr. Zager from Moffitt Cancer Center in Tampa, Fl. Has anyone had him for a doctor?

Just curious!

Thanks in advance! 


Stage 3b

"Fear may be what we feel, but brave is what we do." Ann Voskamp

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Anonymous's picture
Replies 4
Last reply 11/7/2016 - 5:16pm

I was diagnosed in April with 3B melanoma.  Currently participating in clinical trial and receiving keytruda at 200 mg.  Feel as if I just got over the anxiety of the first set of scans and now it is time for it again.  In the study it's written for every 12 weeks for pet/ct and annual MRI of head.  I'm wondering what the standard of care is in relation to scans?  Should I be worried about all the radiation exposure or is that the least to worry about?  Is the recommended interval every 12 weeks for two years?  Thanks so much..

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Anonymous's picture
Replies 5
Last reply 11/7/2016 - 3:02pm
Replies by: youngann, Elizabeth19, casagrayson, Anonymous

Please can someone with personal experience give me an idea of whether this could be a form of nodular melonoma? Awaiting mole biopsy app. It is elevated on corner and is a pale/colourless lump

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Anonymous's picture
Replies 6
Last reply 11/7/2016 - 2:37pm
Replies by: Anonymous, momof4boys, SOLE, Bubbles

folks, my husband is diagnosed with stage IIIb melanoma with a fairly aggressive initial mole biopsy with ulcerationand  2.9mm and positive sentinel node biopsy with 50 cells found.  Mole was on his thigh and sentinel biospy from his groin area. We are at a cross roads to decide for or against CLND. One prominent doctor says NO as there is no data to prove that CLND improves survival chances.  Another prominent doctor says YES because he has a deep hip lymph node which if left with any mico mets might grow and be the channel for travel to the rest of the body before  it is caught and removed with CT scans.

The doctor who is recommending surgery would perform robotic surgery for the deep node removal.  He works with a robotic expert surgeon directing him during surgery.  My husband would be patient number 10 for the robotoc surgery vs open surgery for melanoma.  Surgeon says choosing robotics is a no brainer as it makes the recovery process much easier.

We need to decide this week if we do the surgery or not and if yes, is robotic surgery really a no brainer?

I will be posting a seperate question on opposing recommendations for him for adjuvant therapy.

I am new to this site and hope to get some guidance from all of you who have traveled down this path before.






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jvictoria's picture
Replies 3
Last reply 11/7/2016 - 1:11pm
Replies by: jvictoria, debwray, geriakt

Hi everyone,

Well, ended Nivo trial in June because of side effects and two small spots showing up in the lung. Subsequent follow up CT scans in August showed significant shrinkage; PET scan showed no uptake. Unfortunatly, CT scans last week showed significant growth of the lung nodules and a new spot on the liver.

Doctors have recommended a low dose IPI/Pembro trial so I was wondering if any of you have had experience with the combo. Looking to find out what to expect. Plan is to start the trial this Tuesday.

Any other thoughts are very welcomed also.



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Dear MPIP Community:

Next week, I'll be recording a webinar for Stage III melanoma patients with Vernon K. Sondak, MD, Chair of the Department of Cutaneous Oncology at Moffitt Cancer Center in Tampa, FL. Dr. Sondak has a vast amount of experience in melanoma and surgical oncology and treats melanoma patients at all ages and stages. This will not be a "live" webinar, rather, I will be recording it with Dr. Sondak and his presentation will cover a variety of topics - including diagnosis, treatment and research specific to Stage III melanoma. The webinar will then live on our website and be promoted in a variety of ways.

If you have specific questions or topics that you would like Dr. Sondak to address, please email me directly at I will gather all questions/comments and Dr. Sondak and I will work together to streamline those into a robust and dynamic webinar. 

Looking forward to hearing from you!

Shelby - MRF

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Gigi17's picture
Replies 5
Last reply 11/7/2016 - 4:50am
Replies by: miaka618, debwray, Gigi17, Mat

Hi everyone. I was diagnosed melanoma stage 3c. I am now in a yervoy/opdivo trial with NED. I have just finished my first cycle. Since the first session I have had a horrible headache accompanied with sore eyes, ears and neck. My Mri, eyes, and neck all came back clear? This week my blood work showed I have hyperthyroidism and ALT is above normal. I'm wondering if anyone else feels this way? I've been put on various drugs to reduce the headaches but nothing works! I have yet to be put on prednisone. My oncologists are not sure the headaches are from the trial...but the neurologist and I do. I've never had headaches or issues with my eyes, ears and neck. My lymphnodes in my neck are double there size but do not contain cancer....any thoughts?

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Cathy M's picture
Replies 4
Last reply 11/6/2016 - 6:08pm
Replies by: Cathy M, Mat, Casitas1, Patina

I have read some posts of trying Keytruda or Ipi/Nivo after failing one or the other. MY husband is Stage 4 BRAF Negative. Failed Ipi, Mekinist (targeted), Keytruda, Temodar and will scan Nov 15 to see if he is responding to carboplatin/paclitaxel. He is in a weakened state and though onc offered referral to Scottsdale, AZ my husband doesn't want to travel the 8 hours to get there...Doesn't feel he can keep up with that and would do more harm than good. So if anyone has tried Ipi/Nivo after failing Keytruda I'd like to hear how you did or are doing. We are getting closer to hospice and I'm getting closer to a panic state. Thanks for any info.

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Replies by: Gigi17, Anonymous

I had this large mole on my back for the past 3 years, never really noticed a change. I believed the center was always raised from the get go. I went to the local ER department to get it checked out. The 2 doctor's asked me what issues I had with it? I asked does it look like Melanoma and they told me to them it's fine, it looks benign and not to worry about it. I asked them if it looked deep and they told me no. I went to the local walk in on an unrelated matter and had him check out my mole. He looked very worrisome, asked how long I had it for and scheduled me right away to have it removed and tested. He said it look adnormal and had black spots in it. I asked him if it looked deep and he said it has some depth to it. Both there and the hospital it was a visible inspection only, touch it to see how it feels. The mole is not hard at all, you can move it around like a regular mole. Told me not to worry until the testing has been done. I am afraid what this could be, my mother had Melanoma but had it removed before it can spread. I have the removal surgery come Thursday, hoping for the best that it's benign but my head thinks differently.

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youngann's picture
Replies 5
Last reply 11/6/2016 - 3:46am

While I was having my 4th Ipi infusion yesterday, my husband went down to pick up the CD and radiologist report from Monday's CT scans. In June, my PET/CT was perfectly normal so everything except the right axilliary is new.

Right Axilliary: soft tissue thickening is more pronounced than in previous scan. Possible scarring or post surgical change but could be infectious, inflammatory or neoplastic.

Right Breast: soft tissue thickening 1cm. Could be infectious, inflammatory or neoplastic.

Right Thyroid Lobe: 0.8cm x 0.4cm focus of low density.

Left Lung: 2 pulmonary nodules, 2mm & 4mm

Right Lung: 3 pulmonary nodules, 2mm, 2mm & 3mm

I have a call in to my oncologist to discuss these findings and find out if further tests should be done before I see her on 11/17.



Home of the original "Crappy Shirt"

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Jubes's picture
Replies 10
Last reply 11/5/2016 - 10:46am

Powerful drugs that enlist the immune system to fight cancer can, in rare cases, cause heart damage, doctors are reporting.

So far, fewer than 1 percent of patients taking these medicines — called checkpoint inhibitors — have developed heart trouble. But in those who do, the damage can be severe, and the drugs have led to several deaths by provoking the immune system to attack the heart. The risk appears highest when patients take two different checkpoint inhibitors at once.
“This is a new complication of potentially lifesaving drugs,” said Dr. Javid J. Moslehi, the director of cardio-oncology at Vanderbilt School of Medicine and the senior author of an article published Wednesday in The New England Journal of Medicine. “We’re working to develop treatments for it. Our job is not to say the drugs are bad, but to say, ‘How can we deal with it?’”
The drugs, a form of immunotherapy, are considered a huge breakthrough in cancer treatment. Although they do not work for everyone, they have resulted in lasting remissions for many, including people who were expected to die from advanced cancer that had resisted every other treatment.
Checkpoint inhibitors have been approved to treat six types of cancer, and are being used for many other types. The drugs are also being combined with one another for added effectiveness.
The heart findings should not scare patients away from the drugs, Dr. Moslehi said. He called them “transformative” in cancer treatment and said they offered a “potential for cure.”
Four checkpoint inhibitors are on the market: ipilimumab (brand name Yervoy), nivolumab (Opdivo), pembrolizumab (Keytruda) and atezolizumab (Tecentriq).
The side effect has prompted some hospitals to add extra cardiac testing for patients taking more than one checkpoint drug, in the hope of catching problems early enough to prevent permanent heart damage. If the tests find signs of trouble, steroids and other drugs may stop the assault by the immune system.
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“This is something oncologists should be aware of,” said Dr. Jedd D. Wolchok, chief of melanoma and immunotherapeutics services at Memorial Sloan Kettering Cancer Center in New York, who was not an author of the journal article. “It’s rare, but the fact that people have died from it is a reason for us to try to spare them that toxicity.”
Dr. Wolchok said the problem had occurred in one patient at Sloan Kettering but had cleared up on its own. He agreed that it was advisable to order extra heart tests for patients taking checkpoint combinations.
Dr. Benjamin A. Olenchock, a study author from the Division of Cardiovascular Medicine at Brigham and Women’s Hospital in Boston, was not available for an interview but said in a written statement that the heart problem had affected patients at his hospital. “As the number of patients treated with checkpoint inhibitors has markedly increased, rare cases of cardiac toxicity associated with the use of these cancer therapeutics, sometimes resulting in death, have been seen at multiple institutions including our own,” the statement said.
The first checkpoint inhibitor was approved in 2011. The drugs work by unleashing T-cells, a type of white blood cell, to kill cancer. But sometimes, the T-cells go into hyperdrive and attack healthy tissue. Doctors have known for years that the drugs can have dangerous side effects, including gut, lung and thyroid trouble. But the cardiac problems have taken longer to emerge.
There have been scattered reports in other, less prominent medical journals of heart problems, some fatal, in small numbers of patients taking checkpoint inhibitors alone or in combination. The new report is the most in-depth analysis, including tests for possible genetic or viral causes (none were found) and an examination of a drug-company database to identify other cases.
The patients described in Dr. Moslehi’s article — a woman, 65, and a man, 63 — developed heart problems and died a few weeks after just one intravenous treatment with a combination of two checkpoint inhibitors: Opdivo and Yervoy. Both patients had advanced melanoma, a deadly skin cancer, and were enrolled in studies. Neither had a history of heart disease.
The woman had chest pains, shortness of breath and fatigue, and was admitted to the hospital 12 days after her first dose of the drugs. She had myocarditis — inflammation of the heart — as well as other inflamed muscles and abnormal heart rhythms.
Hoping to quell the inflammation, doctors gave her steroids, but her heart kept deteriorating.
The man had similar symptoms, and based on their experience with the woman, the Vanderbilt doctors treated him with even higher doses of steroids, as well as another drug. He survived only a few days longer than the woman did, Dr. Moslehi said.
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Autopsies found that the patients’ immune systems had attacked their hearts, rejecting them as if they were transplants.
Using data from Bristol-Myers Squibb on 20,594 patients who took the checkpoint inhibitors it makes, Yervoy and Opdivo, the Vanderbilt team found that doctors had reported 18 cases of myocarditis related to the drugs. Six were fatal. The condition was most common and severe in patients who took the combination, affecting 0.27 percent and accounting for five of the six deaths.
Dr. Michael B. Atkins, the deputy director of the Georgetown Lombardi Comprehensive Cancer Center in Washington, called the rapid onset of heart problems “alarming.” He said the cases had led experts in cancer and myocarditis to meet in September with Bristol-Myers Squibb executives. The group agreed that extra heart tests should be included for patients taking combined checkpoint drugs in studies. The tests include echocardiograms and blood tests for troponin, a protein released by damaged heart muscle.
The same tests could be done for patients receiving the combined drugs outside of studies, Dr. Atkins said, but he added, “I am unaware of any formal recommendation.”
Checkpoint inhibitors “are lifesaving therapies for many patients, at least for melanoma,” Dr. Atkins said. “Around 60 percent of patients have tumor responses to the combination, and the majority of those appear to be long-lasting responses.”
Before the drugs were available, the median survival time for those with advanced melanoma was six to nine months, and only 10 percent lived two years, he said.
“We want to do everything we can to make sure these treatments are safe,” he added.
Dr. Atkins said he thought it would be possible to save patients who developed heart problems by intervening early with powerful drugs to shut down the inflammation. That approach reversed myocarditis in a patient at another hospital in Washington, he said.
But drugs that stop inflammation work by turning off the immune response, so they may cancel out any benefit from the checkpoint inhibitors. That would leave patients where they started, at the mercy of their cancer, he said.
So far, there is no way to predict which patients might be vulnerable to heart problems from the checkpoint drugs. For now, Dr. Moslehi said, the best solution is close monitoring for those taking more than one at a time.

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Anonymous's picture
Replies 2
Last reply 11/5/2016 - 4:28am
Replies by: Anonymous, Janner

My friend said its a liver spot, but im not so sure.

What you guys reckon?

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Anonymous's picture
Replies 6
Last reply 11/4/2016 - 6:31pm
Replies by: Anonymous, youngann, Janner

Bit gross guys I apoligise but my question is ive had a mole for a good while now looks circular some ways but looks like at the top right some of it has faded away making it something like a letter b if you know what I mean. Its bright brown and on the palm of my hand, no pain, itchyness or anything and its smooth like the rest of my hand..

Heres pic here if this is any


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