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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JoshF's picture
Replies 16
Last reply 9/10/2016 - 10:21am

Well the initial read from oncologist wasn't the best and wasn't the worst. No immune hepatitis. She said tumor flare is causing issue with enzymes. Didn't real see any significant disease other than what's in guess looking was over a dozen tumors, mostly small but more in there nonetheless. She was happy that there wasn't immune hepatitis because that most likely puts me out of trial. Bad thing is liver enzymes haven't changed. I'm assuming ipi failed...supposed to leave Wednesday for MDA...not a lot of time. Thanks for all the support!


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

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Patrick O.'s picture
Replies 8
Last reply 9/10/2016 - 7:15pm

Hello all my fellow warriors.

Looking for a little advice. I'm Braf positive and looks like the beast is past the groin lymph nodes and possibly in the lungs (had a lung biopsy on 9/2). Am seeing Dr. Mark Albertini at The Carbone cancer center at the UW Madison campus tomorrow to review those results.

He gave me 3 different choices to think about if the lung biopsy comes back melanoma.

1. Pembrolizumab (keytruda)
2. The Ipi/nivo combo
3. A trial with one arm being the Ipi/nivo combo.
And the other arm being Ipi/nivo/gm-csf(sargramostim).

I've never had any kind of treatments.
Unknown primary also.
Thanks for any advice! This board and all of you have been a blessing to me being newly diagnosed back in July.

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stotes's picture
Replies 4
Last reply 9/9/2016 - 9:36am
Replies by: Anonymous, Polymath, stotes

Has anyone progressed from Stage lllC to Stage lV while taking Yervoy in the adjuvant setting?  I have taken three doses of Uervoy at 3mg/kg at this point.  Wondering if anyone has had a similar experience and what you did as your next step for treatment?  I've now received three different recommendations from three different Oncologists.  Thanks!  Christal 

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Travis G.'s picture
Replies 9
Last reply 9/9/2016 - 10:44am
Replies by: Anonymous, RaquelP, Travis G., Aaron, laulamb, jennunicorn

I was recently diagnosed with melanoma. I had a WLE and SNB on 8/24/16. A week later I was told that out of the 4 nodes they removed that 3 were negative and 1 was positive for only microscopic isolated tumor cells. I was told that I was Stage 3 but that her recommendation for now was just to observe because the CLND and the other treatments were too harmful for just this small amount of cells. I have a CT scan scheduled in two weeks and am nervous about the results. Is the SNB a relaible way of staging or could the CT scan show more? The doctor does not seem to think anything will show on the scan but I'm not so sure. I feel perfectly fine but they tell me that doesn't mean anything. Any advice? Thanks.

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Bubbles's picture
Replies 4
Last reply 9/8/2016 - 4:27pm
Replies by: Bubbles, Mat, Polymath

I put up a post that covers Dr. Daud's review of ASCO 2016 immunology updates.  The source is a prIME Oncology CME offering.  I included a link in my post and I think you should be able to log-in on the site to see it for yourself.  However, I put up a few of the slides and basic points on my post in case you cannot.  If you are interested:

Wishing each of you well.  Celeste

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andrewr85's picture
Replies 9
Last reply 9/12/2016 - 8:54am
Replies by: Anonymous, Ed Williams, DZnDef, WithinMySkin, andrewr85, Bubbles

Hello everyone, I have been reading a lot about diet helping once diagnosed with melanoma. Specifically a vegan/plant based diet (here is a video summary:


I am already vegan myself, my Father is the one who has been diagnosed and he is not. He eats a conventional diet, although it would be considered a 'healthier' conventional diet, no fast food and lots of vegetables and fruit. It contains meat and fish with meals 2~ times a day. Milk/butter at breakfast and food containing dairy throughout the day in various forms.


As a vegan I already believe in the positive effects and have experienced the positive effects of the diet - although not anywhere near to the extent of helping with any illness etc.


What I am hoping to find out is must he choose chemotherapy (for example) or vegan diet, or can he do both side by side? 


Nothing I can find tells me that, it's always diet vs conventional treatments. For example, would chemotherapy hinder the results of the vegan diet? I have no worries that a vegan diet would cause him harm, as I have been vegan for sometime and I am healthy and avid gym goer and never had any issues resulting from missing anything due to not eating meat or dairy.


I don't want to force him to do anything he doesn't want to and I know knowing my family the choice between the hospital and diet, the hospital would win every time. I also do not know anywhere near enough to put anyone off going to the hospital.


I do not know what stage his cancer is at. He has not had a scan yet, he was only told 2-3 days ago that he had melanoma after a biopsy on a lump removed from his arm. His scan is next week.


If it is ok to go with conventional treatments and vegan diet side by side I have created a short playlist of videos to show my family to make them aware of the option without overloading them or my Father with information and statistics.


Thanks for any help you can be :)

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Anonymous's picture
Replies 2
Last reply 9/7/2016 - 1:19pm
Replies by: jennunicorn, Anonymous

I noticed this spot in 2010 and since then have had numerous dermatologist visists and check ups and no dermatologist has ever been worried about the spot.    I was 30 at the time and actually noticed it after a week at the beach.   I have never noticed any growth of this spot, it does not itch, it does not bleed,  it just sticks out everytime I look in the mirror and sometimes it stresses me out.     I am not sure what the spot is ?  It might be a mole or an ink drop lentigo but depending on the time of year it seems to change color slightly.   It looks darker in the summer months when I am outside more and fades during the winter months.   I was just at the dermatologist in June... so I do not want to keep running back to them everytime my anxiety peaks.   Is it normal for moles or lentigo's to get darker with sun exposure ? 

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JoshF's picture
Replies 23
Last reply 9/8/2016 - 2:00pm

Hi everyone-

Just wanted to give an update. So after fevers wouldn't relent, my onc did more blood work and blood cultures. Blood work showed elevated liver enzymes. Though she said not horrible, there was significant increase in AST, ALT and Alklaine Phosphate. Also slight decrease in urea nitrogen but didn't appear to be overly significant. LDH shot up to 423 which has typically hovered around 170-200. Follow up blood test showed decrease in 323. AST went down a bit while ALT stayed the same and Alkaline Phosphate went up. I'm not quite sure what all this means but I know it's not good. She said its either the disease or yervoy(immune hepatitis). So another set of blood work tomorrow and abdomen CT. I'm scared to say the least.These numbers keep me out of Adoptive Cell trial at MDA. I have to hope it immune system and I'm trying to be positive but I'm struggling. Constant disappointment. Not to mention that a new plan will need to be figured out. I have TIL product which I'm so grateful for but I have to get in line so there's a wait there...what to do in the interim. Any suggestions? Heard about s trial at Duke. Just feel a sense of urgency. MDA trial finish line is within steps.....


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

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Hamlet1987's picture
Replies 2
Last reply 9/7/2016 - 12:56pm
Replies by: Anonymous, Ed Williams

Hi guys

I have a concern regarding a mole i did not get biopsied. 

In October 2015 I noticed a new raised nodule on my inner thigh. Light brown and it did grow bigger (to ca. 6mm) over a few weeks and stopped growing at some point. It was flabby and soft, I played around with it a lot and “ripped” some of it off with my fingers. It also developed some darker areas all over the lesion.

I didn’t worry since I didn’t know anything about NM. Then I found an article about it and eventually had it checked by a Dermatologist 2 months later. He shaved it of but we didn’t do a biopsy (stupid I know). Although he was a little worried about the dark spots, he said it was nothing.

Well now I really regret not getting a pathology report. My questions is, what can I do? I visited a 2nd Derm and she said there is nothing to do. She said the dark spots are probably dead blood vessels since I ripped a part of the lesion off. I visited a 3rd Derm who says its mostly SK. 

I showed them pics and they both said it didn’t look cancerous but I know they cant be certain with NM.

I really need to do something so I can move on. Can I get a skin biopsy? Lymph node biopsy? PET Scan or anything? I need to do something, i cant just wait until its stage V!

Your response would be much appreciated. Pics of the lesion below.

Thanks a bunch!


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lyfsajurny's picture
Replies 8
Last reply 9/8/2016 - 4:47am
Replies by: debwray, lyfsajurny, Polymath, Patina, Anonymous

Ear ache last september. Tubes in ears etc etc for "ear infection". Ultimately had ear surgery to remove "rarley malignant" growth. Found malignant melanoma. Apparently I am a freak of nature as after numerous tests, poking and prodding,,,,,the melanoma in my ear is the primary tumor. Will start Radiation in a few weeks and am a little wierded out. Would love to talk to anyone else in same situation!

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BrianP's picture
Replies 1
Last reply 9/7/2016 - 2:16pm
Replies by: Julie in SoCal

This looks to have some worthwhile topics.  Free to stream live or attend in person (all though it looks like there might be a wait list to attend).

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katieherwig's picture
Replies 2
Last reply 9/12/2016 - 12:50pm
Replies by: katieherwig, BrianP

I have been going to MD Anderson in Houston since July 2014 battling stage 4 metastasized melanoma. This hospital has given me new hope and a new life! I'm one of the honorees at the walk this Saturday in Houston. 

Please read my story and if you feel lead to donate or join my team and walk-please do!

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Anonymous's picture
Replies 2
Last reply 9/6/2016 - 4:40am
Replies by: MoiraM, Anonymous


I had my melanoma surgery about 9 months ago, (located on my back). I just went in for my 3 month appointment, and told my doctor that I still have pain. She said its normal and that it's prob still healing...I guess what I'm asking is does anyone else have this problem? 



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Aaron's picture
Replies 5
Last reply 9/7/2016 - 5:05pm
Replies by: Anonymous, Hukill, Bubbles, Casitas1, Aaron

Has anyone who has experienced pituitary problems or had ipi or nivo experience a change in taste?  It seems some foods have become more bland. Particularly pickled items. 

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