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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ScaredV's picture
Replies 11
Last reply 7/6/2014 - 7:50pm
Replies by: brittanyx, ScaredV, Anonymous, AmandaLivingston, Janner, Gene_S

Hello everyone,

I'm sad to be posting here, but hoping to find some support and answers.

My fiance was diagnosed with melanoma in April.  The lesion was 2x2cm and it was on his jawline.  It looked like a patch of eczema. Long story short, he had this spot on his face for 5 years, we were told it was a fungal infection, he took all sorts of creams for it, it didn't go away.  Finially a dermatologist decided to biopsy it and it turned out to be melanoma.  Since it was a large spot, only part of it was biopsied and we were told it was only .34mm.  

He had the WLE surgery preformed but they did not check lymph nodes at that time due to the fact that they thought it was only .34mm.  After the surgery, we found out at it's deepest point it was actually 1.23mm with a mitotic rate of 2 (this was only at the deepest point,  there were all different depths and some areas were in situ).  The surgery was a success and the margins were clear.  The surgeon who did the WLE did not want to test his lymph nodes but his dermatologist has decided he does want to test the lymph nodes so we will be meeting with a second surgeon in the next few weeks.  

This whole experience has caused extreme anxiety for me.  I am so worried about him and just want him to be ok.  I do have a few questions that I'm hoping you all can help me with.

The first question is, why does one doctor want to go ahead and test the lymph nodes and one does not? What is the best course of action to take now?  I realize that because he already had surgery, the lymph node testing is not as accurate.  

Are there any risks we should know about when testing the lymph nodes?  

My final and most important question is considering this new information and the location of the melanoma, what are the chances that this has spread to the lymph nodes?  I am so terrified of hearing the results of this and I am unsure what the chances are that this may have spread.  I realize every case is different but if anyone has any numbers or experiences they could share, I would greatly appreciate it.

Thank you so much

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Replies by: hbecker, Ed Williams

Hi everyone, 

My fiancé has just gotten a melanoma diagnosis: Breslow 1.15, mitosis rate 1, no ulceration, Clark's either 3 or 4 depending on which report you look at, located behind ear, tumour removed with clear though very narrow (3 mm) margins, no symptoms, bloodwork and abdominal ultrasounds all clear. We are meeting this week with the surgeon who will do a WLE and SNB. 

I'm trying to come up with questions to ask at this meeting. I don't want to waste the doctor's time, but I also want to use this opportunity to understand the info that's coming at us from all the reports. Any suggestions as to what are useful questions to ask here? So far I've got:

1. The primary tumor was completely excised a couple of weeks ago (by a family doc who thought it was just a mole). Will that excision change the lymph drainage patterns? In other words, does the removal of the primary tumor affect the accuracy of the SNB?

2. The location behind the ear seems to make it difficult to get the complete 1 cm margins, especially in depth  (there's really just bone under the skin there). Is this going to be a problem?

3. When would the doctor recommend a complete lymphectomy? Does the location on the body have any bearing on next steps, if the SN is positive?

4. Is it possible to do testing for the BRAF mutation, either from a positive lymph node (if one is found, which we really hope not) or from tissue from the WLE?

Any other things I should be thinking about here? 


Many thanks in advance. 






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brittanyx's picture
Replies 1
Last reply 7/6/2014 - 9:56pm
Replies by: Fen

I'll be doing the interferon treatment fora year, 5 times a week for the first month and 2-3 times a week for the rest of the 11 months. I'm scared for the side effects. I'm trying to figure out ways to keep megoing when it's hard and stay focused and I thought being in contact with people that have done interferon or doing it right now may help. So if any has done or is doing interferon, I would love to talk you and keep in contact. 

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kellygrl's picture
Replies 7
Last reply 7/7/2014 - 10:12am

My husband was diagnosed 2.5 yes ago with brain mets (13 tumors).... treatments have been:
Zelboraf 14 mos
Gamma x 2 (about to do a third)
Dabrafenib/trametenib currently while also receiving Yervoy
Latest results.. brain tumors are shrinking and/or stable!!
Never give up hope!! Keep a positive mind and attitude!!

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delora's picture
Replies 9
Last reply 7/7/2014 - 12:19pm

A month ago, I went in for my routine PET scan.  My breast and ovary lit up.  After a breast biopsy, they determined that the melanoma has spread to my breast.  I haven't had any tests on the ovary.  I have an appointment at Duke Cancer Center on Monday.  From our phone conversations, the Dr doesn't want to do surgery to remove the melanoma.  I am assuming I'll be going straight into treatment.  I already had interfeion, which was awful.  Has anyone else had this experience?  Any advice?

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Anonymous's picture
Replies 8
Last reply 7/7/2014 - 7:24pm
Replies by: Anonymous, Ed Williams, Gene_S, RJoeyB, washoegal, Teochasse


i follow the forum daily. I am a parent of a stage 3c patient. After two lymph nodes resection surgery my son was diagnosed as NED. He is participating in a trial and had so far two infusions of ipilimulab 3mg/kg. 

The trial involves, among other tests, a CT scan every 3 months. I just wonder if not having any tumor to compare to why it is necessary to expose him to frequent radiation. I wonder if anyone has experienced a different diagnostic and follow up method while participating in a trial. 

Thank ou

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Anonymous's picture
Replies 1
Last reply 7/8/2014 - 9:51am
Replies by: Janner

Hello All,

I am stage 1b patient diagnosed 10 years ago. About a month ago I felt an itch on my flank and saw a bright red nodule about the size of a pencil eraser. Although it reminded me a bug bite, I freaked out and called my dermatologist to check it out. in 5 days. However, in 4 days, this nodule disappered (from palpable become flat) leaving reddish flat spot (not as bright red as it was initially) and I cancelled my appointment assuming that it is improving. Over the course of 3 weeks, it become less visible, and if I streached the skin/pressed on it, if was almost not visible (was blanching). However, whithin past few days it again become more red and visible, got larger , although it is not a nodule and now resemples the patch of eczema  So, I am freaking out again. I am going to make an appointment with my dermatologist to check it out. My question is wether melanoma (new primary or recurrence) can change like this??? Thanks for listening.

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gaby's picture
Replies 2
Last reply 7/8/2014 - 2:24pm
Replies by: Anonymous, hbecker


I feel scared to tell you that my husband is 2 years NED…. were two years of much anguish, tears, anxiety, a rollercoaster of emotions. Thank you all for your support and information, you are a big company when I am filled with despair, and today I want to share this good news with you. I know we did not win the war but .... step by step.


My husband is stage IIIa from june 2012 At that time the oncologist gave him two options:  watch and wait or pegylated interferon for 2 years. He did not felt comfortable with doing nothing,  so He started  pegylated interferon on October 2012.


If God helps us and the next PET will be clean, my husband finalized interferon  pegylado on October 2014.

Melanoma has no rules but today I feel hopeful.

God please give us the opportunity to have a child, because interferon caused infertility ...



(from Argentina)

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Replies by: jualonso, arthurjedi007

I would like to know if there are some good responder to inmunotheraphy after fail to Combo tanfilar/mekinist. I hope many many many....

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Apeachey's picture
Replies 3
Last reply 7/8/2014 - 6:47pm
Replies by: Apeachey, Anonymous

So I recently had 3 miles removed. Two came back dysplastic, one malignant melamoma in situ. I am going back July 23 for a wider excision so they get a clear margin. No one seed worried, they kept saying pre melanoma, blah blah. My report clearly states "malignant melana in situ". 

Is this something I should worry deeply about or is there a great chance they can remove it, and all will be okay. 

Im 29. I have two awesome little boys and I don't want to spend my time worrying. Anyone have some input to ease my mind?


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Anonymous's picture
Replies 6
Last reply 7/8/2014 - 7:43pm

How do lymph nodes feel if they have melanoma?  Sore? Just larger?  Hard?  Soft?   I'm just curious.  Thanks!

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Gene_S's picture
Replies 2
Last reply 7/8/2014 - 10:02pm
Replies by: Gene_S



Skin cancer is the most common form of cancer in the United States with more than 3.5 million skin cancers diagnosed in over two million Americans each year. Additionally, one American loses their life to melanoma every hour.  As a result, Senator Jack Reed (D-RI), Senator Johnny Isakson (R-GA), Congressman Ed Whitfield (R-KY) and Congressman John Dingell (D-MI) recently introduced the Sunscreen Innovation Act (H.R. 4250/S. 2141) to alleviate the current 12 year backlog of sunscreen ingredients, and provide Americans access to new and innovative sunscreen products. This is a meaningful step forward in the fight against skin cancer.

How You Can Help: Ask your representative and senators to support the Sunscreen Innovation Act. Senators Jack Reed (D-RI), Johnny Isakson (R-GA), Congressmen Ed Whitfield (R-KY) and John Dingell (D-MI) are calling upon their colleagues to become cosponsors of the legislation and pass the Sunscreen Innovation Act as soon as possible. Contact your representative and senators and ask them to cosponsor H.R. 4250 in the House of Representatives and S. 2141 in the Senate.

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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 2
Last reply 7/9/2014 - 8:06am
Replies by: rick1981, HelenQLD


After my father in law noticed a small lump on his side in spring of 2013 his GP doctor told him to watch it. Fast forward to January 2014 and he had the lump removed. It was a melanoma tumor the size of a softball. Scans later reviewed he had lung mets along with additional spots on his spine, bone, liver, splean, and abdomin. They did one round of Ipi before learning he had a BRAF mutation. He was put on the Mek combo and his LDH levels seemed to return to normal in April, may & June after being in the mid 700's. Two weeks ago he had an onc appointment and although his scans showed to be mostly stable he had two soft tissue spots grow on his right side and his LDH level was back to mid 700's. The onc started him on Ipi today, but his blood work showed almost a 900 LDH level. My concern now is he is already in so much pain (on morphine and delada) with it so far progressed I don't know if he will be around to see if the Ipi had worked. We have a great melanoma oncologist at a great facility I'm just concerned it's too late. 

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scastor's picture
Replies 2
Last reply 7/9/2014 - 12:46pm
Replies by: ltalley, Anonymous

I got the call yesterday that my evolving freckle was in fact Melanoma. I am waiting for my path report, but my dermatologist said that it was .29 mm, which I know is stage 1 and not bad at all. I am scheduled in three weeks to have an WLE. Now... I have two questions:

1. It was shaved off.... and I've read with Melanoma that this is a big no-no. So, could this ".29mm" depth potentially be deeper? I don't have my path report yet, so I don't know if my margins are clear or not. But could a shave biospy get it all?

2. Should I find a Melanoma specialist in my area?

Thanks for your help :)

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