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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keepthefaith11's picture
Replies 1
Last reply 9/4/2016 - 8:34am
Replies by: Bubbles

My dad had his brain scan on Friday. It has been a little more than a month since he finished whole brain radiation. Does anyone have any ideas of what we might see on the scan? Just really nervous and want to know what to expect. He had 13 Mets in the brain, ranging from 2 millimeters to 15 millimeters.

He is feeling great now. No issues with speech and plenty of energy. Living his life as normal. No headaches, no mood changes. I would think this is a good sign. Especially since all this started with seizures.

For those of you who have had brain radiation, did it work?

The doctors are saying that depending on how the scan looks they will determine treatment based on that. If it looks like there is activity even after radiation, they will start him on the Inhibitors. Otherwise they feel comfortable getting him on Opdivo.

I know radiation is just a temporary fix. How long did it take before your tumors started growing again.

Please share your experiences. Thank you!


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landlover's picture
Replies 10
Last reply 9/3/2016 - 9:40pm

I just wanted to post a little update on my situation.  Brief background is I am stage 3c (diagnosed stage 1 in Nov. 2015) status post left neck dissection in May, now with new and growing lung nodules making me ineligible for the clinical trial I was hoping to enroll in.  The lung nodules are small (3mm, 4mm and 8mm) and inaccesible for needle biopsy at this time, and did not "light up" on PET.

I wanted a VATS to remove one for diagnostic purposes so that I could get treatment if it is mel.  I was really distraught when my doctor. said "no".  However, after a 45 minute appointment with him this tuesday during which he went over everything very thoroughly with me, I am at peace with his recommendation to wait and re-scan in 2 months time.

I am looking forward to a beautiful Michigan fall and for the first time since my surgery I feel a little free from stress and worry.  I understand that I am most likely going to be dealing with mel again, but for now I am putting it on the back burner and enjoying this beautiful life.  It isn't often that we who have melanoma get to relax but I now look at this as a gift.

Thanks everyone and I am here with you in your journeys  as well

Best,  Peggy

Stage 3C, primary on neck, neck dissection May 2016.

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sscottmusic's picture
Replies 7
Last reply 9/3/2016 - 2:21pm
Replies by: jennunicorn, Anonymous, Kim K, landlover, debwray, Rick from NC

This is Stan Scott from King nc. In July they found my 3rd mm after surgery the site got mrasa. Now this week they found my 8th basil cell on my nose. The first cancer on my face now I'm afraid I will come out looking like a monster. Help me. 


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Jennifer516's picture
Replies 8
Last reply 9/3/2016 - 10:20am


I'm new to all of this and was hoping someone would be able to give me some insight into ipilimumab treatment and what this means.

In 2015 my dad was diagnosed with melanoma, they operated on the area this was found and we assumed all was well. At the beginning of this year we then found out this had spread to the lymph nodes in his groin (having originated on his foot). The lymph nodes were soon removed and we were told they 'thought' he was in the clear. 

Having always been active and proud, it was around this time my dad stopped discussing the cancer with me and left me under the impression he had been given the all clear. I was aware he was undergoing some radiotherapy but had thought or possibly hoped this was just a precautionary measure. 

I've since came across some of his information to say he is now going to undergo treatment with ipilimumab however I'm unsure exactly what this means and can only get so much information from search engines. I've managed to learn this is mainly done when people have stage 4 melanoma, which suggests that I was incorrect in thinking he had been in the all clear.

Whilst I fully respect my dad's decision to keep certain information to himself, I'd like to learn as much as possible about the treatment. Also if it is in fact stage 4 melanoma, what exactly does that mean in this day and age in regards to treatments and severity etc.

Any information will be hugely appreciated. Thank you. 

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btcedarr's picture
Replies 9
Last reply 9/3/2016 - 10:06am
Replies by: kimberlyI, Jacklyn, btcedarr, Janner, Alce123, Anonymous, Bubbles

Someone mentioned that Janner has a forum for these stages, but I can't find it. Can someone post the link?


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julia80211's picture
Replies 4
Last reply 9/2/2016 - 8:42pm
Replies by: julia80211, debwray


I've seen some others post their biospy results so I'm hoping that someone can take a look at mine too.  


A little background: A friend of mine passed away from Melanoma last fall.  She asked all her friends to get skin checks, so I did.  I had one mole that had changed but nothing that seemed concerning as it had always been skin color.  Then part of it develped pigment.  Then the pigment formed a dark line in the mole, so I made an appointment.  She drilled how important the "E" is when looking at your moles.  The PCP said "It's probably nothing" but referred me.  The derm thought it was nothing but took the biopsy to put my mind at ease.  Everything came back fine in March.  

Once the biopsy area healed a tiny dark spot showed up and grew rather quickly from a tiny dot to a 3mm spot in the matter of a few weeks.  I was in for something else and the derm saw it and asked so I recounted what happened.  At that point they decided to take a punch biopsy.  

I got a call last Monday.  The derm said that the biospy came back with "severe atypia" and she said the pathologists couldn't decide if it was atypical or melanoma.  So I have a excision scheduled for Sept. 2nd.  From reading other path reports on here, I don't seem to have some of the key measurements though. :( 

I just picked up a copy of the report today to try to put my mind at ease.  The whole "maybe it is, maybe it isn't" made me nervous.  

On the tissue exam part it reads "erthematous papule x 6 hours, reactive erthema vs erthema multiforme vs bullous arthropodB- hyperpigmented 3mm macule in site of previous shave biopsy for nevus, recurrent nevus vs atypical nevus vs melanoma."  

It was reviewed by 2 pathologists.  The first one said "recurrent junctional nevus with architectural disorder and severe cytologic atypica, surgical margin free of involvement."  Sounds good, I think?   The report says thsi person is a pathologist but doesn't specify dermapathologist. Second pathologist (who is specified as a dermapathologist) says: "hyperpitmented 3mm macule in site of previous shave biopsy for nevus, recurrent nevus vs atypical nevus vs melanoma."  

Normally, I wouldn't worry but given how quickly the spot grew at the point of the shave biopsy is making me a little nervous.  Any thoughts? 


Thank you!

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Mtnears's picture
Replies 18
Last reply 9/2/2016 - 7:07pm
Replies by: Mtnears, jennunicorn, Ed Williams, Becky, Fen, Anonymous

First, this community has been great for getting information as we've been learning about the road ahead of us.  Now that we have more information I thought I would post it and get feedback from others!

My wife was recently diagnosed with Melanoma.  49 years old, no family history that we're aware of.  Developed a nodule under a blue mark on her skin that she had forever, decided to have it removed and we found out the results.  

Since then, she has had a PET scan which was negative as well as a WLE and sentinal node which the pathology from that was all negative as well (phew).  Tumor was on her bicep, from a report I have it says:

Tumor thickness 7mm, Clark's level V, Not ulcerated, histology unknown, no evidence of metastasis and Serum LDH elevated.  Classification T4 N0 M0 AJCC Stage IIB.

So, based on that info they want to proceed with Interferon Alpha 2B for 4 weeks at a high dose, 48 weeks at a low dose.  

Doctor said that with a IIB it is debatable on adjunct treatment but that most recommend it, especially with her age and health being good, better to attack hard now.

Any comments / suggestions / expectation setting appreciated.  We have a couple weeks before she will start treatments.



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Hello everyone,

I was wondering if there was anyone out there that has run into Adrenal Insufficiency post Immunotherapy treatment? My treatment ended late May 2016 (Nivo) due to side effects and a recurrance in a lymph node. Continued to feel poorly and was put on Prednisone for 4 weeks 40mg tapering down to 10mg. Felt great and then a few weeks passed and began to feel poorly again. Finally last week, I was refered to an Endrocrinologist and I was diagnosed with Hypophysitis / Adrenal Insufficiency and have been put on Hydrocortisone 20mg morning 10mg afternoons. I'm feeling ok but not as good as when I was on the Prednisone. Better, just not 100%... maybe 85%. Also, Thyroid is weak so they put me on a low dose supplement. I'm an athlete and during this time I lost at least 40% of my muscle mass. Trying to gain some back but it's a slow tiresome process in my current state.

Was wondering if anyone else has gotten this and how they're dealing with it? Are you on Prednisone or Hydrocortisone? How do you feel? Any long term effects, things to watch out for? Were you able to get completely off the steroids?

Finally, does anyone have recomendations for Endrocrinologists that has experience in Immunotherapy side effects. There are a lot of good Endros out there but few with this experience.



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Joycem's picture
Replies 7
Last reply 9/2/2016 - 5:20pm
Replies by: Joycem, Bubbles, Ed Williams, Anonymous


While obsessing/second guessing over my decision today to decline adjuvant interferon recommended be oncologist, I came across this article that I felt was helpful, but I am unclear what "translational oncology" (in "the Oncologist-Journal of Translational Oncology") means. Is this a mainstream reliable source in your opinion?

I'm guessing since author is associated with Sloan-Kettering this is pretty solid source? 

There seems to be some murkiness as to whether I am properly staged at 2C or 2B according to my oncologist, (which significantly impacts my prognosis.) He said he was going to seek clarification from pathologist. I guess what is, is tho, and I don't think it would change my decision or follow up plan.

Best to you all, 


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michaelinsocal's picture
Replies 6
Last reply 9/2/2016 - 3:23pm

Hello fellow melanoma warriors. Just a quick update on me.

DX stage 3A Nov '13. Been nearly three years, which is a bit of a milestone for anyone who's fought the good fight. 3rd year CT scans came back "all clear", NED. Praise the lord and the wonderful support from family and friends, my wife in particular and of course, this community which helped me coupe of all the initial uncertainty.

There is never a good time to get any type of cancer but things are changing for skin cancer. The awareness is spreading like wildfire and the research and options to fend this horrible disease off is expanding. Its definitely not the same fight it was 5-10 years ago.

Never lose hope and live life to the fullest.

Thank you, community, for all of the love and support.

Michael in SoCal

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Regarding recent comments on this forum, it is all very well for those with the benefit of insurance in the US to imply that an SLNB is a no brainer with thin melanomas, be your own advocate etc etc. Many readers of this forum will be from Europe where, as is mostly the case and definitely is where I am in the UK, consultants will follow nationally set guidelines. As medical treatment is free to all in most European countries, there is a limit to funding and patients cannot just demand procedures just because they might want them. The guidelines in the UK are backed on the AJCC 2010 guidelines and these di not call for an SLNB under a depth of 1mm so it would be highly unlikely that you would get one.

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SueDan's picture
Replies 2
Last reply 9/2/2016 - 12:05pm
Replies by: SueDan, Anonymous

My husband (Dan) was diagnosed stage 1 in October 2014, but the Drs. had varying opinions on the length of time to have 3 month follow-up visits so I'd appreciate any insight anyone has.  Dan wants to cut down to 1 or 2 visits a year now, but that makes me nervous as he always has something frozen or biopsied at every 3 month visit (biopsy results are anywhere from benign to severely atypical).  Thanks for any info you can give us!

Sue Byre

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Anonymous's picture
Replies 4
Last reply 9/2/2016 - 11:55am
Replies by: Bubbles, Ed Williams, MoiraM

Has anyone seen any research on what may make someone more likely to respond to treatments (specifically ipi and radiation).  Our dietitian said not to have too many fruits and vegetables during radiation-something about too many free radicals.  I know this is the million dollar question, but just curious what we can do to improve the odds-3c.

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marcelwshorts's picture
Replies 1
Last reply 9/2/2016 - 9:37am
Replies by: Ed Williams


I'm new to this so bear with me. We found the first melanoma on my back in 2014, during a normal physical. (I am  caucasian and have many moles). 10 months later we found a second one. Now I'm going to the dermatologist every three months. This time they want me to get set up with a mole mapping appointment. So that will happen in the next few weeks. 

However, the only reason they found the second melanoma so soon was because I asked my doctor to take one mole off to ease my paranoid mind. Unfortunately it came back positive for melanoma. 

Since then they have only done one biopsy (which thank goodness was negative). I try to wear sun screen every time I go out. I go every three months to get skin exams. But I still feel like a ticking time bomb. 

So I guess what I'm asking am I doing everything that can/should be doing? 


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Anonymous's picture
Replies 0

See other post


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