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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Boos Mama's picture
Replies 5
Last reply 6/25/2011 - 5:55pm
Replies by: Anonymous, Ranisa, DeniseK, Boos Mama, MichaelFL

I found a Melanoma last year, 2010, when I was pregnant with my son. It was early, in situ, minor surgery, no big deal.
My sister and my cousin have also had Melanoma. Sunday night, 6/19 I found a mole on the outside of my knee that I know had not been there. It's about the size of a pencil eraser, more red than brown and slightly raised. Last night, Friday I found another about five inches away almost identical. I know it had not been there. I also had some numbness in my toes recently that I just attributed to my migraines, probably a coincidence.

It's Saturday. If they are fast growing melanoma, they are growing really fast. I have had the service page my dermatologist but so far no answer. What would you do???????

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I am hoping to find someone who has had a similar situation. My precious 11 year old little girl has been seen by 2 dermatologists (one was for second opinion) for a small black irregular bordered lesion onher lower left eyelid-where one would apply eyeliner. Due to past photo's we know that the lesion came up in the last 28 days. The first Dermatologist terrified us all because she had the whole dermatologist office come in and "look" at the lesion. She (as well as the rest of her colleages) informed us that this lesion looked very suspicious for melanoma and it needed to be fully exised ASAP. Second pediatric dermatologist said the exact same thing. She is scheduled to have it removed this Wednesday. I would like to insert a picture but I can't get it to work. Any others have any similar situations?

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Anonymous's picture
Replies 12
Last reply 7/8/2013 - 3:53am

Hi all. First time poster here, although I've been following the forum occasionally for some time. Perhaps my question is a bit dumb but please bear with me and help me clear up some things. My 70 year old father is a stage IV melanoma victim, with mets in his lungs, liver and lymph nodes. He was first diagnosed in 2009 as stage III and had had subsequently removed his primary tumor and some lymph nodes in his neck.

He was now given a choice of treatment that would consist first of dacarbazine and then of ipilimumab (if necessary, I guess). The thing is, my father is extremely negative towards any chemotherapy and doesn't even want to hear about it. He insists he will beat the disease on his own terms. It's really his body, his illness and ultimately his decision, and I think it ought to be respected, but on the other hand I also try to explain to him that ipi really doesn't work like classical chemo, and that there are many people out there who benefited wonderfully from this drug. He might take my word for it when I present him with some success stories from this website. However, his doctor maintains that the only possible way of treatment is to administer dacarbazine first, and only later ipi.

Is this true? I've read on the Internet that this combination is a standard procedure "one-two" punch, but can't a patient demand to undertake ipi treatment alone if such his desire happens to be? I also find it a bit counterintuitive to administer a cytotoxic drug first, with all its detrimental effects on the immune system, and only afterwards apply ipilimumab, which is then supposed to work through this compromised immune response. Wouldn't a more logical sequence be ipi first, dacarbazine second?

Again, I apologize for my ignorance of the subject. Any clarifications will be greatly appreciated.

I also wish best of luck to all of you battling this disease. Stay strong! Whenever I read a success report, I want to just high-five that person. :)

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Nicky's picture
Replies 3
Last reply 6/25/2011 - 10:47am
Replies by: jimjoeb, Nicky, Carol Taylor

Hi everyone, well I was admitted to hospital to get a wide excision on the melanoma in situ on the right upper back and fortunately the surgeon discovered another suspicious mole on the left upper back which has been excised.  so a little bit sore but recovering well from both surgeries.

This is now my third melanoma primary over 11 years.  I am still currently Stage III and I hope to remain that way.  It certainly gives you a reminder not to drop the ball when it comes to regular check ups.  It was six years since my last melanoma and I still feel that my survival has been mostly due to early detection and being proactive with health professionals

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MRFUser2011's picture
Replies 7
Last reply 6/27/2011 - 10:02am

Hi All, I have quit visiting this bulletin board because I find it just takes too much of an emotional toll on me.  However, because I have GOOD news, I wanted to take a minute and share it.  The reality of melanoma can be terrifying so I think it is important to share when we have positive news.

My original Dx as Stage III was in 4/08 and was followed by invasive surgery.  I was clear on all my scans until I had small nodules first appear in my lungs on PET/CT in 4/10.  In 2/11, I had one nodule removed via VATS from my right lung and in 4/11, had the other removed from my left lung via VATS.  I won't say it was easy or without pain, but I will say that here I am 10 weeks post op from my second surgery living a relatively normal life again!  My PET/CT of two weeks ago came back clear.  : )  

I want to share something that has for me been life changing.  After my surgery in 4/08, I lived in constant fear that the melanoma would recur.  I had a very bad story in my mind about what that would mean for me and my family and I wasted a lot of time dwelling in fear as a result of that story.  As it has turned out, I did have a recurrance and yet it was completely treatable and I am here to continue on with my life.  I am no longer terrified of melanoma and I no longer waste time worrying about it coming back.  I am doing what I can to live a healthy life and will take life one day at a time.  

May blessings of wellness be with you, Shari

Game on. I am going to win! (The thought I had when I heard the doctor say I had melanoma.)

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renakimu's picture
Replies 2
Last reply 6/25/2011 - 10:43am
Replies by: jimjoeb, MichaelFL

hello and goodmorging for everyone

does anyone know about homeopathy and mel?if  it is succeful?if someone know smthng pls help

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DeniseK's picture
Replies 5
Last reply 6/28/2011 - 12:49am

Hi everyone,

I had my surgery and sentinal lymph node disection 16 days ago.  I go back to docs on June 30th.  Since the surgery I've had a chronic headache going through about 6-8 ibu's a day.  It could be from the stress!  My question is more about the pain in my chest.  My tumor/mole was on my upper/inner right breast.  The surgeon took alot of tissue which basically took most of my right breast.  I'm having pains that emminate down into my chest.  Kinda like the pain after the lymph node mapping.  I was just wondering if it was normal to have those pains. 

Thanks for your help on this.  I'm sure I'm normal but just want to hear it from another person who's gone through it. 


Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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dani_elle's picture
Replies 5
Last reply 6/26/2011 - 6:57am

Hello Everyone
Im feelin the need to vent:
Well my husband finally went into surgery on Tuesday For the superficial Lymph node dissection, in which he also got a rotational flap from his calf to cover up his heel. Wellllll Im a bit frustrated For soo many reasons. Ive been trying to get ahold of the oncologist. Miguel had an appointment yesterday the 23rd But since Hes hospitalized he couldnt go so ive continuosly asked nurses to page her & see if Maybe It was possible She could come up to the 4th floor... Literally 5 min away... so i could get Some questions answered. And We have yet to hear anything!! I dont know whats worse.. The cancer part...or not knowing whats next!
Then i was told that if i went to MD Anderson there would be an issue with the no insurance deal. My husband doesnt qualify for medicaid because of the fact that he does not have a social and honestly it breaks my heart to know and be told that its very likely he may not even be eligible for clinical trials. Doesnt sound very ethical to me,but im going to keep on trying and asking around. Social or no social... He is a human being before anything else.
And to top it off today the plastic surgeon came in concerned about the flap over my husbands heel. It seems to be slowly dying so they began a leech therapy (kind of gross i know, but we actually think its pretty cool:) Im crossing my fingers that the leeches will make a difference. I know we still have a LONG way to go in the healing process, but it sure would make a couple of us glad if this procedude didnt fail on us!=/

Thnks For Reading.

-Dont Tell GOD How big your storm is, tell your storm how big your GOD is!

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Anonymous's picture
Replies 6
Last reply 6/25/2011 - 5:02pm
Replies by: boot2aboot, Anonymous, lhaley, MaryD, Carol Taylor

Hi Everyone,

I am new to MPIP & this is my first time posting.I am stage 3. A few weeks ago, I had surgery to remove a 3rd recurrence in my thigh.  The surgeon got some clear margins but not  the lateral margin. Apparently, he could not see a "satellite nodule" at the lateral margin.

The pathology report stated " a satellite nodule present at lateral margin". I contacted the pathologist to inquire how large was the satellite node. The pathologist told me that the nodule had been "cut through" and that the nodule was 2mm but he could not tell how large the other side of the cut tumor nodule was that remains in my thigh.

I am devasitated that the satellite nodule tumor was cut through & remains in my thigh. I can only speculate that melanoma cancer cells from this tumor are now floating in my thigh and into my blood/lymph system because it was cut & did not remain contained within clear margins

There are so many of you experienced & knowlegeable about melanoma, surgery. treatment, etc. so I sincerely would appreciate your opinion about the significance & ramifications of the satellite nodule tumor being cut through.

Am I overacting that hat melanoma cancer cells from this tumor are now floating in my thigh and into my blood/lymph system???

Thank you so much for your help.




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Wally's picture
Replies 1
Last reply 6/24/2011 - 8:58am
Replies by: lhaley

Hi all, Wally from Johannesburg South Africa here. I previously posted in May 2011 and had some very pleasing replies.

I have eventually obtained a Histopathology following upon the resection of the right middle lobe of the right lung. You may recall that about 5 years ago I had a resection of a malignant melanoma in-situ from my right ear. Final Histology report stated up to 1 mitosis / mm2 could be seen. Breslow 0 Clarke Level 1. No ulceration. Solar elastosis of collagen noted in upper part of dermis. Surgical margins free from the lesion with a radical perimeter of 5mm and a vertical perimeter of 8mm.

Macros copy of lung resection:

  1. Medial segment middle lobe – stapled pulmonary wedge resection 40X30X30mm (18 grams), in which there is a fleshy greyish-white tumour, 20mm in diameter as per macro photograph fig 1.
  2. Lateral segment, middle lobe – pulmonary wedge resection 80X30X10mm (14 grams), with an area of HAEMMORHAGE/QUERY HAMEORRHAGIC INFARCTION measuring 30X10mm as per macro photograph fig 2.


Representative sections of the MEDIAL SEGMENT/MIDDLE LOBE/SPECIMAN 1 shows pulmonary parenchyma in which the presence of a METASTATIC PLEOMORPHIC PIGMENTED EPITHELIOID TUMOUR is present, within an intrapulmonary lymph node.

This tumour has features consistent with those of a METASTATIC MALIGNANT MELANOMA.

Representative sections of LATERAL SEGMENT OF THE MIDDLE LOBE/SPECIMEN 2 show an area of recent pleural intrapulmonary haemorrhage.

There is, within this tissue, desquamated bronchial epithelium, which shows the appearance of a “pseudo tumour”.


Appropriate immunohistochemical confirmation of the SUSPECTED METASTATIC MALIGNANT MELANOMA will follow. HMB45/Mel A marker.

ICD-10 Coding                    C34.9







  1. Mel A (marker for melanocytes – very strongly positive.
  2. HMB45 – marker for melanocytes - very strongly positive.


The above immunohistochemical profile supports the morphological diagnosis of a METASTATIC MALIGNANT MELANOMA.

This is all very confusing to me as I have never been exposed to this medical terminology before. I am not sure of how serious my situation is and find no case history on the Bulletin Board similar to mine.

I guess the bottom line is:

Is it evident from the report that all traces of the Melanoma have been removed and all necessary tests done to ensure that no Sentinel Nymph Nodes evidence signs of cancer or have been biopsied (as I have read in previous posts)

How great are the chances of a recurrence somewhere else in my body – can one tell?

The Oncology Radiologist suggested a wait and monitor strategy with a chest X-ray every 3 months and a blood test. Is this sufficient to establish that it is not spreading or should I insist on a PET / CT scan?

No treatment at this stage was recommended (I presume that is unless the follow-up visits evidence a recurrence, I was not told so though.)

I would appreciate any guidelines, input or thoughts please as I remain anxious and need to get perspective as to how to deal with this going forward. I try getting my mind off this but continue finding my mind wrestling with “what ifs” – especially at night when trying to sleep.

The sun shines at the dawn of each new day even though it may not always be visible.

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willtolive's picture
Replies 10
Last reply 7/9/2011 - 4:18am

Hi everyone

I´ve been reading posts at this Bulletin Board for almost a year now. Some posts I have read with tears in my eyes, and some with joy. Here is our story (short version): 

I am the husband to a 39 year old woman from Denmark in Europe.

In 2003 she had a mole removed from her thigh (Stage II). It contained melanoma-cells.

In 2007 melanoma had spread to a lymph-node in her groin (Stage III). Surgery was needed.

In 2008 melanoma relapsed in another lymph-node, surgery again.

In 2009 melanoma hit us hard (Stage IV). It had spread to her lungs, one met in each lung. The size of the mets was 25 mm and 16 mm respectively. Surgery was fortunately possible.

In October 2010 melanoma went back. This time there was multiples mets in each lung. About 5-6 mets in each lung. The biggest was 19 mm. It was unsurgeable, which was very hard to cope with.

In November she began Interferon/Interleukin-2 treatment. It was tough beyond imagination. She had all the known sideeffects, and she was so bad during hospitalization. The midway PET/CT scans in January revealed that she was a responder! Scans showed that all the mets had become inactive or necrotic. Some mets had even shrunk a little bit. We were delighted, and she continued with the third and fourth series of Interferon/IL-2.

February 15 we got the results of the next scan. We were optimistic because the midway scans was indeed promising. We were shocked when told that the melanoma had began to grow again. There was 2 active mets now. One big met, about 32 mm in diameter, in her right lung lightened up. In addiction there was a lot of fluid in the right lung membrane, and it probably contained melanoma-cells. All other mets was still inactive, except one, and our doctor feared that it would be only a matter of time, before the other mets would begin to grow again. We were devastated.

Our doctor suggested Ipilimumab, and my wife started March 11, on the same day Japan was shaken by the huge earthquake. I watched it on TV while she was receiving the first dose of ipilimumab (3 mg/kg dose). I remember wishing that the drug was the earthquake of our lives…

My wife have always been a positive and happy human being, no matter what challenges life would bring, she still truly believe that she could defeat this Melanoma Devil. She began consulting a Chinese doctor and received acupuncture twice a week. Beside this she trained 4-5 times a week, fitness and running. In these situations we talked about preparing your body to fight the cancer, with a "little" help from our friend, ipilimumab…

She received 4 doses every third week and got a CT scan in June.

Three days ago on June 21 we arrived to the hospital to talk with our doctor about the results of the CT scan. The time from the scans being done and to get the results is awful with a lot of anxiety, you guys all know… The scan showed that the 32 mm met in the right lung was completely GONE!!!!! The fluid was gone too, and the x-ray showed a nice healthy looking right lung. We were stunned. I hugged my wife with a lot of tears in my eyes. Our doctor was very delighted too. Ipilimumab had worked much better than expected. We had hoped for stabilization, maybe shrinkage, if we were lucky. But this???? Unbelievable. Some other small mets was still there but hasn´t grown in size in half a year, and our doctor said it very well could be necrotic tissue.

This is where we stand now. We´re thrilled and delighted and so so happy. We have now dared to plan for more than a month :-)

So this story is to all you Warriors out there, keep on fighting with believe and trust in your hearts. The path is very tough but the battle can be won, sooner or later. We´ll keep fighting this Devil.


Kind regards


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flydiver's picture
Replies 20
Last reply 10/23/2013 - 9:00pm

I was recently diagnosed with stage III after a biopsy of a golfball sized tumor in the lymph node in my left armpit. It took a while to do the biopsy, PET and CT scan and I had a lot of time to research. No primary tumor could be found. I'm still waiting for the brain MRI.

I know this form is all about encouragement and support, and my oncologist seems awfully rosy, suggesting trials and interferon. I'd like some advice from others that may be or have been in my mindset.

I'm 46 and single with no kids. I own a business and have done well for myself. I have no fear of melanoma. But there are two fears that keep me up at night:

1) what if I spend months or years in aggressive treatments, trials and waiting rooms only to die without really living?
2) what if I ignore treatments, sell my business, go have a blast and blow all my money, only to live another 20 years?

I watched my dad work two jobs most of his life, save up for retirement, then die at age 53 of esophagus cancer in only 6 months. I'm not about to let that happen to me.

I know there is no clear answer as to my life expectancy. I'm less concerned about having a long life than in knowing how long that might be. In other words, I'd rather know I had 2 years than not know and live for 10. It may seem premature, but my impulse is to cash it all in, skp the treatments, and go have fun. I could have one he'll of a life for 5 years, but if I'm still around after 10, I may want to kill myself.

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Anonymous's picture
Replies 6
Last reply 6/24/2011 - 8:23pm

So, my husband Dave had a scan on June 14 for a "stuck feeling" in his throat.  His scan came back (I have listed the "final report") as follows:

A mass is seen in the upper paratracheal region.  It's maximum size is approximately 3.6 x 3.4 cm.  This mass is most likely neoplastic lymph node.  A smaller, more cephaled node in the paratracheal region measures approximately 17 mm transversly. The upper lungs that are included here are grossly clear.

He called his oncologist to ask about this, and they immediately set up an appointment to see the thoracic surgeon for a biopsy on Wednesday.  His appt with his regular oncologist was scheduled for 7/8, but he always receives a copy of all of his scan reports in the mail.  When he called they told him it could be anything of the following, in this order: Melanoma, Benign, or Lymphoma. 

My question to all of you is this - has anybody had a lymph node of this size and shape be benign?  And if it is melanoma, where do we go from here?

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Lisa13's picture
Replies 1
Last reply 6/24/2011 - 7:54am
Replies by: FormerCaregiver
Many impossible things have been accomplished for those who refuse to quit

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CAdesiree's picture
Replies 2
Last reply 6/23/2011 - 6:09pm
Replies by: MichaelFL, Janner

i went today for my second opinion.  the dr is setting me up for scans & mri.  she is also sending me to oncology surgeon.  states last drs note on MOHS not very complete.  wants me to meet w surgeon to decide if we will reopen original site to verify NED.  is concerned bc biopsy stated margins involved.  so back to waiting some more.  at least i feel more comfortable w this dr.  but i will be finding a new derm to do the addl biopsies.  thanks for all the help you all have been.  i really appreciate it.  if i hadnt been warned that an oncology specialist might not biopsy i would have had a different appt today.

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