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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Hukill's picture
Replies 2
Last reply 3/7/2018 - 8:11am
Replies by: marta010, corgimom

Just had my 40th treatment of nivo and today I have very blurred vision.  Has anyone one else experienced this side effect? It is listed under rare side effects for nivo.

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So just a brief history. Had a mole removed Feb 2016, came back Melanoma Stage 0. I have been going to the dermatologist every 3 months since I had that place removed. I have had several places removed on my stomach since then and everything has come back ok. 


Friday I went in for a regular check and he saw a spot on my arm that didnt look good to him. He went ahead and removed it. I am now waiting on the results.....the suspense is killing me. I was going to attach a photo but I am not sure how to do it. 

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Rob578's picture
Replies 5
Last reply 3/6/2018 - 7:27pm

Your gut microbes may give melanoma treatment a boost
Published Friday 5 January 2018
By Catharine Paddock PhD
Fact checked by Jasmin Collier

Having the right balance between good and bad microbes in the gut may improve the likelihood that immunotherapy successfully treats melanoma, which is the most aggressive and dangerous form of skin cancer.

This was the conclusion that researchers from the University of Chicago, IL, came to after they found much higher levels of specific bacteria in the stool samples of people with melanoma who responded to immunotherapy, compared with those who did not respond to the treatment.
Among the "good" gut bacteria that the team found to be abundant in those individuals who responded to "PD-1 blockade" immunotherapy were Enterococcus faecium, Bifidobacterium longum, and Collinsella aerofaciens.
The scientists found that having higher levels of these strains of bacteria in the gut seemed to increase penetration of immune system T cells into the microenvironment of tumors and boost their ability to kill cancer cells.
In the journal Science, they note how the people who did not respond to the immunotherapy also had an "imbalance in gut flora composition, which correlated with impaired immune cell activity."


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MelanomaMike's picture
Replies 5
Last reply 3/9/2018 - 8:44pm

Hay Family, just a quick note to say hello & thank you for supporting me {and countless others} as we figure out what to do next {for those who's meds are not working as they should} but, were alive Today & that means the world to us & the folks who love us {and probably pisses off the people who cant stand us but f^#$k em'! haha}...Other then my Thyroid problem, im takin a med for that {LizoThyroxin} or something like that, i feel ok i guess, just gettin' over being bummed out about my last CT results but, like i just said IM STILL HERE! that alone i keep telling myself haha...Its all good, im in the fight & all take good care ok? love ya guys...Mike

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Irishone21's picture
Replies 6
Last reply 3/9/2018 - 10:46pm


I was dx with stage 1 melanoma in Sept on my right arm.  I have had a lump on my scalp for a good year or two. The PA I see at the derm office says its just a cyst. I feel like she barely looked at it. 

I was willing to let it be but since the melanoma dx, I'm thinking I should have it biopsied/removed just in case. Has anyone here had anything similar? Is it possible it could be melanoma?

Any thoughts would be appreciated.


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jessica492's picture
Replies 2
Last reply 3/6/2018 - 12:27am
Replies by: casagrayson, Anonymous

Hello all,

I want to start by saying you all are awesome warriors! My grandmother on both sides have been battling melanoma for years. 

The reason I'm writing is that I have a large mole. It's kind of in an awkward place (vulva) and it's flat. The edges and blurred and slightly asymmetrical, but the color is consistent. I am making an appointment for a dermatologist - but the thing is, i noticed it years ago. About 9 to be exact. Is it possible that I have had melanoma for years without knowing? I'm just terrified, and that fear has kept me from getting it checked. It's irrational, I know. How long can you have these without any adverse symptoms? Because otherwise, i feel fine.

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Nick C's picture
Replies 6
Last reply 3/6/2018 - 9:03pm

Hey to all you warriors...

Had a scan on Friday...showed "mild progression". Went in for my weekly treatment today, thinking I would be out of the trial (especially when I didn't get called for a blood sample). Took my vitals, and then met with my OC.

Although there is still progression, he said I could finish out the cycle, if I wanted to and we would make a determination after the next scan on the 6th. Of course, I said let's go for it.

Trying to get to Virginia to see my new grandson...trip planned last week was canceled because of my Shingles outbreak (which are clearing up nicely). Now it looks like the second week of April. At least the weather should be nicer.

Take care all and keep fighting.


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Patina's picture
Replies 9
Last reply 3/6/2018 - 8:25pm

My Mom is a total success story when it comes to melanoma and the revolutionarily immunotherapies now available. She was diagnosed on Halloween in 2013 with melanoma. By Thanksgiving we knew she had brain mets too - after a misdiagnosis!  We were lucky enough to eventually find the right doctors and she got the right treatment Yervoy and Gamma Knife Radiation. 

She was lucky for more than one reason. The first being that the 3rd opinion found the brain mets which were missed. She was treated 4 days before starting treatment at USC with Yervoy. The second is because she was a supper responder and the tumors just melted away before our eyes... Finally, when we got an answer we didn't like about a brain MRI we headed to USC for a second opinion. Her new doctor found another misdiagnosis! My Mom was treated successfully for 17 brain mets a week later!  If it weren't for the folks at USC (and a daughters persistence) I am sure my Mom's outcome would not have been as good as it's been.

Here is her story!


Mom's been treated for 28 brain mets!

When in doubt get a second opinion. It can make all the difference sometimes.


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Raco's picture
Replies 2
Last reply 3/6/2018 - 12:27am
Replies by: Raco, Bubbles

Need some feed back please. I had stage 2 Melanoma on my left side. had surgery Feb 5th to remove. 7 inch incesion. and a SLNB under left arm which there were two removed as they were showing blue dye. Both LN came back as Microscopic Cancer N2A  (Stage III ? )

Went back to Surgeon who to remove stiches and he said that he may want to take our more LN but wait and see what the Oncologist suggested.  Oncologist apt said that the margins were clear on my side but the LN (2) came back with cancer, so he wanted to do a Brain MRI and PET Scan, which I just had  March 1st and 3rd. I have a followup apt with Onocologist on March 8th.   

If any thing that  lights up from scans, the onocologist said our path will move in a different directio however, if scans come back Neg. than he suggest SLND and some therapy.

Does anyone have any thoughts or suggestioins on what type of therapies may be out there to treat Melanoma.  I know the questions is broad but some insite may be good so I dont go into apt blind.     JUST Want to be prepaired.

Thank in advance for your imput. 


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Marcin's picture
Replies 5
Last reply 3/6/2018 - 1:56pm
Replies by: Marcin, Anonymous, Janner

I've been diagnosed with Stage I melanoma (Clark's level III) after my routine derm checkup in February, and had it removed last Thursday (March 1st). After two days, I noticed a big swollen lump in the armpit area, which is tender to touch. Today's Sunday, so I can't call the doc to follow up, but I'm really worried if this is related to the melanoma. Theoretically melanoma should not spread to the nodes at this early stage, but there could be some possiblibity? I had my lymph nodes swollen while sick, but never in that area.

Any thoughts?

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45_dps's picture
Replies 2
Last reply 3/5/2018 - 7:34pm
Replies by: Bubbles, TexMelanomex

Hi! I’ve read occasionally over the past 9 months but primarily been buried at work and feeling like melanoma was in my rearview mirror. I had an extensive surgery in Feb 2017 (followed by 3 Ipi and the 8 Pembro) with scans every 3 months since. But I just had a scan which showed tumors in my parotid, neck nodes, and lymph nodes behind my ear. It turns out the tumors in my parotid and behind ear have been there all along but only identified by radiology now. So they have been stable all along (I had an unknown primary and I think that’s why they didn’t know where to look).  Now getting a parotidectomy and removing the nodes behind my ear in the same surgery (not doing anything about the neck nodes because they are sub centimeter).

I guess what I’m sayin is that I’m back and look forward to helping others who may experience an unknown primary.


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Ridingaroundwith27Jennifers's picture
Replies 14
Last reply 3/10/2018 - 9:41pm

Hi All,

Just wanted to share that after a very long and intense year and 5 months of very scary ups and downs with this disease my last CT scan showed only ground glass areas.  The oncologist was happy to announce she considers me NED!  She then told me that since I had the brain tumor the last time I was off treatment that we needed to continue with the Opdivo at least another year.  

Despite the great news I'm hesitant to be too happy and reluctant to consider myself in the clear.  I worry that this will not be my last dance with this devil.  I'm still bearing the scars from the brain surgery and radiation.   My right foot is still numb from the crainiotomy.  I'm still not mentally whole.  

Thanks to all of you who have helped me carry on and stay strong.  Your guidance and support have meant the world.  To those who feel like they are in the worst of it please stay strong and keep fighting.  May your NED diagnosis be just around the corner.  

Good wishes to you all,



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TexMelanomex's picture
Replies 11
Last reply 3/7/2018 - 5:45pm

Hey Warriors! Just wanted to give a quick check-in after surgery yesterday...Surgery was completed and no skin graft was necessary much to my delight (quick recap, this was to remove the lymph nodes and tissue destroyed by PV-10). I was thinking this would be a small incision (few incisions), wrong was I! I have about a 10" diagonal scar from my shoulder down into my pec, and in fact a deeper incision was made into my pectoralis major and minor on the left I have this ever so sexy battle scar to compliment my skin graft on my head, lymph node dissection scars on the back of my head and neck, as well as the donor graft site on the back of my leg! I feel like I'm getting pretty good at this surgery thing!

What is a Warrior without plenty of battle scars? :-) The bad heavy lifting, push-ups or much of anything other than stationary bike for about 6 weeks while this heals :-(

Anyway...all is well, resting in the hotel in Houston, doped up on Norco, doing some healing and waiting on round #8 of Pembro on Tuesday. I hope you are all battling hard and staying deep in the fight!

Warrior On!



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foothillfella's picture
Replies 7
Last reply 3/31/2018 - 1:31pm

I'm in the midst of taking Mekinist and Tafinlar, for two weeks, in preparation of Opdivo/Yervoy immunotherapy. The side effects of the pills have been primarily fatigue, fever, extreme chills and shivering, aching joints and muscles, especially hips and lower back, difficulty sleeping. About 5:15 Wed. morning, I was on my knees, with dry heaves.

I'm trepidatious about the potential side efffects of the Opdivo/Yervoy treatment. Most seem to be diarrhea and fatigue, but many others alre all over the place. What is the experience of this group?

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