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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Replies by: mamatupou, Anonymous

Hey all, it has been a long time:) Happy to be 6 years away from diagnosis!

So, went to derm and had some biopsies done. OF course I have some basal cell stuff. I feel like I will have my whole face redone 1 inch at a time. However, the other biopsy was on my right leg.

This poor leg has had two surgeries, one to remove the original tumor and one to remove my lymph nodes (RLND). This new pathology shows a "compound nevus ( associated architectural disorder and severe cytologic atypia)

So here is where I need advice. The derm wants to do a wide excision. My concern is the complications that come with surgery on this leg. Is it severe enough to take my chances, or is it so unlikely to become melanoma that I don't do the surgery and take my chances?

I would love to hear straight forward answers. pro/cons, the good the bad and the ugly.

I have 4 kids under 13 and need to make smart health decisions. I try to make educated conservative decisions, but I feel like I am making decisions on 5 yr old information.

thanks ahead of time


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MaryD's picture
Replies 5
Last reply 2/6/2016 - 9:57am

I am fortunate to be long term Stage IV survivor (7 years since last recurrence) and over a period of 8 years, did multiple treatments (INF, vaccine trial, Ipi, pulsed IL-2).

While I'm certainly not getting any younger (61), I've really noticed more joint pain and osteoarthritis in my feet and hands.    A lot of this seemed to come on  after the pulsed IL-2 treatment but it may well be the result of cumulative treatments over time.  

I was wondering if anyone else has experienced this after doing multiple immunotherapy treatments.  

Thank you,


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MaryD's picture
Replies 2
Last reply 1/31/2016 - 4:59pm
Replies by: Bubbles, Jubes

I am fortunate to be long term Stage IV survivor (7 years since last recurrence) and over a period of 8 years, did multiple treatments (INF, vaccine trial, Ipi, pulsed IL-2).

While I'm certainly not getting any younger (61), I've really noticed more joint pain and osteoarthritis in my feet and hands.    A lot of this seemed to come on  after the pulsed IL-2 treatment but it may well be the result of cumulative treatments over time.  

I was wondering if anyone else has experienced this after doing multiple immunotherapy treatments.  

Thank you,


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keepthefaith11's picture
Replies 5
Last reply 1/29/2016 - 6:01pm
Replies by: Anonymous, mybelle, keepthefaith11

Ok, here is another question. At this point, would it greatly benefit him to go to Moffitt in Tampa? Since at this stage the nest step would be Yervoy. I am not seeing many other options except wait and see. Would they do anything differently you think? I just don't want to delay the start of Yervoy waiting for an appointment over there. Any opinions?

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Anonymous's picture
Replies 10
Last reply 2/6/2016 - 7:20pm

If I'm taking yervoy and have no side effects does that mean it's not working. I mean do you have to have side effects for it to be working. Anon

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keepthefaith11's picture
Replies 15
Last reply 2/4/2016 - 9:15am

Hi everyone

I have been lurking since my father's initial diagnosis back in December. He had a mole on his chest that started bleeding. The biopsy came back as stage 3b tumor. 3.2 mm, ulcerated, mitotic rate 1. Doctor could feel a lymph node in the armpit enlarged so he asked for a scan, which came back clear with the exception of the node. Last Thursday he had a SNL which showed cancer in the suspected mole. While in surgery they took out a total of 8 nodes. We got the results back today, 2 of 8 were affected. The enlarged on was extracapsular, which really got me worried. The doctor wants to start Yervoy within two weeks. He said radiation was not necessary since the lymph nodes have all been taken out. Everything had clear margins.

I am really worried, how bad is this? I know it's very advanced, but we were just thankful it had not spread to any other organs. Any help would be appreciated. Any advice? Is this the normal progression for treatment?

Thank you so much for reading, you seem like a wonderful community!

Ps. My mother has stage 3 breast cancer 14 years ago. 7 nodes involved. She is fine and has never had a recurrence. I guess this is what gives me hope and makes me not completely lose it.

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DZnDef's picture
Replies 6
Last reply 1/28/2016 - 7:49pm
Replies by: DZnDef, WithinMySkin, BrianP, Anonymous

Hi everyone,

I took an MPIP "holiday" over the Holidays and pretended I didn't have cancer for a while.  It was nice to just enjoy living life for a bit.  I started lurking again earlier this month but decided today I should finally post again.

Today is the 2-year anniversary of my recurrence.  After being NED from surgery in 2012, a chest X-Ray on today's date in 2014 revealed new spots in my lungs.  I thought I was a goner in a few months.  I never expected to be around in 2 years still feeling "healthy".  So I thought that was worth celebrating.

As for the update, some of you may recall that I made the wacky decision to pursue alternative treatment first which I started in March of last year.  This was after January 2015 scans showed both growth and a new met (after several mostly stable scans).  In December 2015 I decided to have scans again after an 11-month interval.  I was really hoping the scans would be definitive (either definitely working or definitely not) so my next steps would be obvious.  Unfortunately, as is so often the case with this disease, the results are not so cut and dry.

The good news:  No new mets!  (Yay!)

The bad news:  All mets are larger.  (Boo.)

My conventional doc (the pulmonologist in this case) wanted me to start conventional treatment right away.  My NY doc (the alternative one) was not concerned with the results as she claims the growth is likely inflammation not true growth and to focus on the news that there were no new mets over an 11 month period.

Additional odd tidbit:  They only mentioned one met in my right lung where previously they always mentioned two (one of which was always stable at 3mm).  They didn't say it went away or is no longer visualized.  They just didn't mention it at all.  Maybe it fell between the slices this time and is still there.  At least it didn't get any bigger or it would definitely have been mentioned.

Which is all to say I can't be sure this treatment is working and I can't be sure it isn't.  I'll just keep at it for now and continue to reserve my right to change my mind at any moment.

I appreciate so much everyone sharing their stories on this site.  I'm constantly re-evaluating what my next steps might be based on the valuable information you all share.  I am such a coward when it comes to drugs. I hope I can muster the courage to jump in if it proves necessary (and I hope I have the wisdom to identify that moment if it hasn't passed already).

Happy New Year to all of you and I wish you all good health


Maggie - Stage IV (lung mets unknown primary) since July 2012

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jamieth29's picture
Replies 24
Last reply 1/30/2016 - 2:10pm

Just got done at my local oncologist visit and found out they approved it for me. I was very surprised just wanted to let people know some doctors and Insurance may let people get it. I still have some hurdles to get through the first big step is pet/ct and MRI next Thursday. I asked my doctor how long we would go for and his opinion was 6 months or a year. I'm still unsure about my decision and am not going try and not Look past scans on Thursday hopefully the come out clear. I tried getting Nivo through a trial before but relapsed locally before trial started. So I am basically getting trial at home. Everything in 3c N.E.D is kind of a unknown as far as side effects and such but leaning heavy on going for it. I have read info on the trial that Celest went through a couple times so there is some data. Any thoughts or questions?

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Anonymous's picture
Replies 11
Last reply 1/28/2016 - 6:15pm
Replies by: Anonymous, JuTMSY4, BrianP, Polymath, Mat, Bubbles, pookerpb

I need some advice on treatment options.

I have mets everywhere in the liver, bones, spine, neck, lymph nodes , lungs and abdominal wall.

I have been on Keytruda for five months.

The doctor wants to switch me to Nivo to see if i respond to nivo. He says he has patients that responded to Nivo that didnt respond to Keytruda but I believe it is basically the same drug so am not really keen on doing it.

I mentioned Ipi and he said i could try that.

What do other people think? Which is the better option?







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ashleyc's picture
Replies 5
Last reply 2/1/2016 - 3:47pm
Replies by: mary1233, ashleyc, Kim K

Father has mucosal melanoma. Had a recurrence after four years from diagnosis. It was removed surgically and now our options are watch and wait or choosing chemo with interferon or Cisplatin and Temozolomide. Anyone else been faced with this decision have any advice? I did ask about ipi but was told there was only one study using it as adjuvant therapy, the dose seemed too high and risky, and it was for those in stage III with a positive lymph node. So oncologist made it sound like it wasn't an option. Thank you to all in advance. 

ashley chavez

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Okay, so I was at work today and I noticed a black dot under the palm of my hand. It's about the size and looks like a sharpie mark on my hand. I could almost swear that it used to be a freckle but i can't find any proof (previous pictures) I didn't have any pictures of my hand where the dot is. 

What im asking is: is this worth going to a dermatologist to get checked out? Could it be a blood blister I just realized i had? Or should I just give it time and see what happens from there? I am currently flipping out and I don't know what to do 

anything helps I appreciate it a lot 

please email me personally:

i will then send a picture as I can't figure out how to tag it in the forum. Much Thanks

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I am getting opinions on treatment for a 1.3 mm melanoma on my leg that was removed and microscopic cells were found in 1 of 2 sentinel lymph nodes that were removed in my groin.  My surgein is recommending all the lymph nodes be removed in that area - I am deathly afraid of getting lymphodema.  It seems some people wait and see and then end up doing it.  Please tell me if you had it, did they find melanoma in your other lymph nodes, do you have lymphodema?  Is it as bad as I think - should I do it?  Thank you to all - I have been so humbled by this experience that has changed my life 3 weeks ago,  I am blown away by the generosity and kindness of strangers to help each other.


God Bless you ALL!!!!!


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Renate's picture
Replies 5
Last reply 1/27/2016 - 2:10pm
Replies by: Renate, AllysonRuth, Janner

I had a 1.3mm melanoma removed from my thigh and microscopic cells were found in one lymph node.  They did a MRI and PETCT Scan and the results were clean except there is a gumball sized hotspot on the PET Scan on the opposite side of my pelvis where the melanoma was found.  My dr thinks it is probably metabolic activity in my small intestine but to make sure they are going to do a CT Scan to see if its solid - Has anyone had anything like this???  This waiting and worrying is hard to handle.

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Anonymous's picture
Replies 2
Last reply 1/27/2016 - 12:00pm
Replies by: Anonymous, Fen

Just recieved scan results.   I have been on ipi/nivo treatment and appear to be responding.   No major side effects.  My results look like a response so far. It's been 6 months and I feel good.   I'm interested in the thinking about the longer term durability of the treatment.   What is the likelihood or relapse or additional mets.   Thanks  for feedback.   Chris.  


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LoveLife's picture
Replies 8
Last reply 1/29/2016 - 8:12pm
Replies by: Cynlee, LoveLife, Janner, Anonymous

I wanted to share my story since I am going in for a biopsy for an atypical mole on my foot. It will then be sent to a pathologist and it's irregular, discolored and with black dots. For those of you with short attention spans, I'll ask my question now before I share. I am having a wide exision biopsy on my foot? How long was your recovery? What was the procedure like?

Now that my question is out, I also wanted to share my story because I'm scared and I've already learned so much from reading this Bulliten Board. Today is the day I audition for a dance company that I've been training several months for. I'm 30 and even though I was overweight and miserable for most of my early schooling, I had a great life change in my 20's and started to salsa dance more intensely. The irony of it all was that I was told I was not the ballet type when I was 5, but Salsa is like ballet with congas!

It took me a long time to feel comfortable in my body. I hadn't seen my doctor in a while. I had a blood clot in my leg that traveled to my lungs (pulmonary embolism) when I was 24 but this is the healthiest I've ever been. I got really sick with a random virus before Christmas and booked a last minute appointment to show my doctor a growth on my pinky toe. It wasn't discolored but she sent me to a podiatrist to have it removed. What I thought to be a superficial visit to the podiatrist became a concerning visit. I actually felt weird going to the doctor for it.

The Podiatrist looked at my toe and then started asking about another mole on my foot. I've had this mole since I was a child. I've had two and while one of them has faded, the other has become more discolored and dark. I made a joke about it and then the Doctor looked at me with a look of concern I couldn't shake off. He asked me if anyone in my family had skin cancer and then took a step back and said, "You need two surgeries and I'd like to do that in my outpatient clinic at Beth Israel Hospital in Boston.

He then asked, "Can I draw on you?" My first reaction was, "Can I audition on Tuesday?" He didn't look amused or say anything about dance. He then drew the shape of an eye-lid on my foot. He explained how that I needed a wide-local excision. At that point, between his concern and urgency, I felt scared. I asked if this is something that could happen on an existing mole and I can't remember what he said. All I heard was, "My staff will call you from the hospital," and there I was sitting in the doctor's room alone. 

I left the office and went for an x-ray. He said that the grow could be an extra bone but also wanted to remove the mole and the skin underneath to have a biopsy. I usually have a delayed emotional reaction to things. I'm really good at responding to a crisis but this visit was different. I called my primary care doctor since I need to get clear for surgery and she said that I'd have to go on medication before the surgery since I've had a pumonary embolism and bed rest is risky for me.

I took a good long look at the mole when I got home. It's irregular, two different colors and I have some black dots on the side. I remember is scabbed the last time I went on vacation. I also have a new one that appeared on the sole of my foot. I'm scared and in what I've read I have a lot of respect for those with Melanoma. I do not have an diagnosis since I am days before my surgery but I kept telling my friends two weeks before this happend that I felt like I needed to start juicing and change my diet to feel more energy. I've been calling the office everyday since the doctor needs to submit his notes in order for me to be scheduled. He hasn't done that since Thursday.

I know it could not nothing, something, or life-changing. Either way, foot surgery at the peak of my dance is really upsetting. I went to rehersal last night and cried the whole way home. I wanted to ask if anyone else has had a wide exision on their foot and if so, how long did your recovery take? I obviously won't be able to place any pressure on it and I walk to and from work.

Any advice would be appreciated and for those actively fighting melanoma, I thank you for sharing your story. It's helped me a lot during this time of uncertaintly. In my gut, something wasn't right about that visit. When I played sports we always had to get to know our opponent to create a strategy. I feel like the more I read, the better I can be prepared but at the same time, I just want to know what's going on with that mole.

Thank you for reading and sharing in advance.


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