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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My husband was diagnosed in August with brain metastases. He was given steroids to reduce the swelling.  He had a ct scan done that showed some nodes in lungs and a suspicious something on his kidney. After 2 months of recovery from brain surgery he had a pet scan done and nothing lit up. The nodes in lungs and kidney are still there but they did not light up. Also initially they could not tell if the brain tumor they removed was melanoma or something else. So they sent it to Cleveland Clinic and they finally determined it was melanoma.The doctor said that when you take steroids it changes the tumor so it is hard to tell what it is. What do you all make of this?

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imgonnabeatthis's picture
Replies 3
Last reply 10/26/2016 - 6:50pm

I had a bump removed from my back in September 2016.  Shortly after I was told it was malignent, 1.2 mm thick, not ulcerated.  Last week I had surgery to test a lymph node and remove the skin around the cancer.  The lynph node came back clean.  They said the edges of the removed skin were also clean, but the thickness was adjusted to just over 5 mm.  I am meeting with my surgeon and oncologist next week.  They advised no additional surgery is needed, but more treatment is suggested.  The doctor said we would discuss more at my appointment, but said High Dose Interferon was likely indicated.  Any information about this treatment, experiences, options or the road ahead of me would be greatly appreciated.  I can't even think straight right now and articles on the internet tend to put me into panic mode.

Thank you.

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Anonymous's picture
Replies 1
Last reply 10/26/2016 - 4:55pm
Replies by: Janner

I recently had my wide excision and 1 cm margins where used based on the information the shave biopsy provided. However, the tumor thickness, based on pathology report, revealed the margins shoud have been 2 cm as the melanoma was greater than 2 mm in thickness but my surgeon says we have enough margin that is clear and further surgery is not necessary at this time.

Should I seek a second opinion? My surgery was done through the Navy and now I am wondering if I should seek a second opinion through a civilian location. I have tried to locate guidelines for what the standards are for clear margins are but I am unable to find exactly what I am looking for. If anyone of has any links available that provide information on safety margins for clearance please let share. 

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Anonymous's picture
Replies 4
Last reply 10/26/2016 - 3:44pm

 My  60 year old brother was told last Friday he was terminal he was diagnosed 16 years ago with Uveal  melanoma at that time he had proton beam radiation and after five years of follow-ups said he was good to go!  On May 27, 2016 he went to see in that Tom at tryst as he was having vision and headache problems at that time they discovered a brain bleed fast forward to June 2016 they found a brain tumor which was removed after an MRI  they found he had a liver tumor in July he had half of his liver removed subsequent follow-up showed everything was good after 10 Madar and radiation as of last Friday he was told he was terminal a pet scan revealed lymph nodes in his groin and neck on fire they said no need to biopsy they know  they know it's melanoma they will put him back on 10 Madar today five days at 360 mg 28 days off and then five days does anyone know anything that can be done at this time his surgeon told him no clinical trials for his B ref negative help

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Anonymous's picture
Replies 7
Last reply 10/26/2016 - 2:41pm

Hi ,

Am due to start ipi nivo on Monday- large number of diffuse liver mets.

Am still on high dose antibiotics Cipro and rifampicin following a severe infection in a previous surgical scar on the knee- post CLND on that leg. - although infection now seems to have gone .

Have started BioKult- pro biotic  to try to improve gut microbiome pretherapy.

My question is- are antibiotics likely to interfere with efficacy of ipi nivo combo ? Anyone been given advice re this from their oncologist ? 

Very keen to do what it might take to make the combo work...and reduce risk of side effects. Any hints or tips out there ?

Thanks in advance




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SOLE's picture
Replies 8
Last reply 10/26/2016 - 12:38pm

When your lymph nodes starded appearing recently, how were they? Small, moderate, big? How so? All swollen I suspect? Firm, movable? Really obvious to palpation? Redness, could you see them clearly to the naked eye? Painful? Did you experience sharp pain that would last a few seconds and stop or else? Did they appear ovenight? A few days, two weeks?

I am asking all these questions to get a clear sense about how this happens.

Thank you Jenn. I dont mean to intrude in your personal life, I really want to understand.

And tell us how you become a complete responder to the combo! If I progress, I hope to be able to try that first and foremost (given that it is available in Canada...)

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Anonymous's picture
Replies 6
Last reply 10/26/2016 - 11:29am
Replies by: Ed Williams, Geoff Linschoten, Anonymous, SOLE, Janner

Hello I was diagnosed with stage 3 melanoma last year and now have shown a recurrence in the same leg and small spots on the liver. I have been looking into Rigvir for a while and many look at me as if I'm crazy. I have small children and need help and have heard back from their clinic but want to speak to people wgo have tried it.

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lmccann2016's picture
Replies 9
Last reply 10/25/2016 - 11:17pm
Replies by: lmccann2016, SOLE, Anonymous

Recently diagnosed with melonoma. It has been removed however tumor was 4.7 mm mitosis was 7 not ulcerated and margin cleared by 0.3 mm. Seen oncologist and had fine needle as I have swollen node and shows cancer from pathology report. Nov 4th under going wide excision to clean up neck get more margin and SLN biospy removing all nodes on left side of neck where original melonoma detected. Well I am scared. My name is Lisa 3o have a family and now after this I have just stopped everything. Depressed anxiety you name it. My biggest fear is dying funny I work as a personal support worker.

They haven't given me a stage however I have been reading and if it's in nodes I am stage 3 I guess I'm confused some say two some say three from what I read. So far organs are OK no spread at this time.

Any advice would be greatly appreciated

Lisa McCann

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Karensway87's picture
Replies 2
Last reply 10/26/2016 - 4:06pm
Replies by: Tim--MRF, youngann

I recently went to a chiropractor who noticed a wierd mole on my back. Two spots. One of them I knew was a tiny round mole from as long as I can remember. But, it has gotten bigger and it is very uneven. And ragged edges. I went to dermatologist and he did biopsy ( no results yet) but, what I am concerned with is him talking to the nurse while doing it saying 12 mm with irregular pigment. He then said to me , it's probably nothing but, then he handed me a brochure on skin cancer as I left. I have one week to wait for results & am nervous. I just knew someone who died from skin cancer. And a friend who had melanoma & had surgery. The other spot was also biopsied & he said 6 mm irregular pigment. Any insight? I don't know what any of this means. Thanks

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Anonymous's picture
Replies 7
Last reply 10/26/2016 - 9:27am
Replies by: BrianP, cancersnewnormal, Johnjk04, snow white, Anonymous

Long story short, diagnosed in 2014 Stage 4, done the interferon, IL-2, Ipi, opdivo and now in genetic  clinical study.   The dr is only doing ct scan (chest, abdomen & pelvis) & mri of face (mel spread to sinus cavity).  When I asked if they will be doing pet scan he said no, the study does not require it. My question is should I be concerned of not having a pet scan? Is the ct & mri enough since it is covering the areas where the tumors are?  Wanted to get opinions before I call my local onc and talk to him and see if he recommends pet scan.  Thanks for your advice.

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Aida Ballesteros's picture
Replies 2
Last reply 10/24/2016 - 11:08pm

Today a Dr who is friends with my dad told him about transfer factors, and how a friend of his took this therapy to treat his bone cancer and is and has been NED for almost 10 years now, without chemo or radiation. Has someone heard anything about this therapy? Is it even an option?

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Fressia's picture
Replies 1
Last reply 10/25/2016 - 1:15pm
Replies by: Treadlightly

Hi Everyone, 

I had my post-surgery follow up today. I was diagnosed via shave biopsy which initially revealed the depth to be at least .67 mm with a mitosis rate of 3/mm2, non ulcerated, and lymph/vascular involvement not identified.

Wide Excision revealed:

-maximum tumor thickness to be 2.15mm (invades recticular dermis)

-macroscopic satellite nodules not identified

-ulceration not identified 

-regression not identified 


-Peripheral Margins: uninvolved by invasive melanoma distance of invasive melanoma from closest peripheral margin: 8mm

-Deep Margin: uninvolved by invasive melanoma distance of invasive melanoma from closest deep margin: 16mm 

-mitotic index: 2/mm2

-lymph/vascular involvement: not identified

-perineural invasion: not identified 

-tumor infiltrating lymphocytes:present, brisk. 

-tumor regression: not identified 

2 lymph nodes were removed and those revealed no metastasis..... fantastic news but why do I feel worried and scared?? 

Based on the overall results I am Stage IIa

I am very alamared by the depth melanoma based on the WLE...... I know the depth of the shave and wide excision cannot be combined, so what does this mean? The uncertainty bothers me. 

Secondly, what's next? My surgical onocologist said it would most likely be monitoring and follow ups with derm but that he would consult with the tumor board and see if any additional therapies are warranted. I asked about routine CT/PET scans and he said these are only needed if there are symptoms.... is this true?? I  feel like it would be best to schedule them routinely along with the derm follow ups. 

For those of you who are or have been Stage IIa.... what's next now? Monthly skin checks, follow ups with derm, follow ups with primary....? I just want to make sure I'm not missing anything. Thank you for taking the time to read this post! I've learned so much about melanoma through this website and I am very thankful to have the this as a resource especially during this roller coaster 


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Jubes's picture
Replies 33
Last reply 10/26/2016 - 6:28pm

Diagnosed stage 4 June 2014, pembro 9 months shrinkage of lung met from 8 cm to 11mm stable Jan-April now 16 mm and more active on SUV 

I've been waiting for the results of this last pet scan to update. And the news was disappointing. After 6 months my lung met has grown from 11mm to 16 mm and SUV gone from 3.2 to 7.4. I know this is tiny compared to what many of you are going through but so disappointing as its the first growth since my tumour shrinkage on Pembro. 

I had to stop after 9 months (last year August) due to auto immune reactions and have co incidentally been on infiximab this last  6 months for the side effects

the doctors are discussing in an interdisciplinary meeting on Friday but just wondering what you all would choose given these options

1. Back on pembro /with/without stopping infliximab

2. Radio surgery

3. Garden variety radio

4. Big surgery

5. Wait and see

6. There are apparently some clinical trial pills that I don't qualify for due to my immune response but they may be coming generally available soon

thanks for any thoughts



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JoshF's picture
Replies 11
Last reply 10/25/2016 - 9:49pm

Hi all! I posted a question regarding responses for people who had sub-q's. The responses I received were great. One of the key takeaways for me was people noticed tenderness/soreness in and around the sub-q. So a few questions....

How long did soreness/tenderness last?

How long until you noticed it shrinking? Days...weeks?

For those that had multiple sub-q's...did this happen one by one or was it something that happened simultaneously in all tumors?

Reason I ask is that I have roughly a 2-3CM tumor in my shoulder (deltoid). That thing started getting really sore and hard Thursday nightish. It stayed that way until today. It's still firm and tender but not as bad. Can't really say it shrunk yet which is why I ask. I'm cautiously optimistic and know responses vary...rapid to over time. If this is in fact inflammatory immune response, I don't know what to expect as I have no experience. I'm praying this sucker is being broken down as I write this. I appreciate anyone who can share. I found it encouraging that people said they experienced this and the it happened to me but I'm tempering expectations. Thanks.... Be well!


Let's work for better treatments....for a cure!!!!

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