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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DZnDef's picture
Replies 10
Last reply 11/8/2015 - 8:34pm
Replies by: Anonymous, AshleyS, Marianne quinn, DZnDef, kylez, Fen, emagdnim83

Is Ipi not working for you?  Maybe you need a fecal implant.

Interesting new article suggesting a link between the gut microbiome and the efficacy of immunotherapy.

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

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JoshF's picture
Replies 19
Last reply 11/13/2015 - 7:29pm

Looks like after surgery we'll be moving forward with Opidivo. After speaking with my onc about different options; based on data, side effects etc... this seems to be best option. My concerns were that if this isn't the "magic bullet" for me, I don't want to paint myself in corner from doing any other treatments, specifically the combo therapies out there. I asked why not IPI-Opidivo now and answer was measurable disease and side effects. So questions from current people on this?

Side Effect profile? I was told usually minimal in most cases....

What is plan in terms of duration for treatment schedule? My onc said there is limited data on how long protocol should be administered.

Anyone change their diet? My sister is trying to push me to ketogenic diet? Not familiar with that. I need to eat better in general but diet isn't horrible.

Drug administered every 2 weeks....infusion or port? I saw a post on that so I'll go into that to see what everyone is saying.

Any other advice....suggestions? Changes to normal life other than going to get an infusion every 2 weeks?  I'm not ashamed to say I'm afraid...maybe I shouldn't have thought I was over the hump.... this is some life we all live but it beats alternative at this point!

All the best!!!


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

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casagrayson's picture
Replies 4
Last reply 11/10/2015 - 10:52pm

My husband is a Stage 1 melanoma patient.  He has had two primaries, both on his head.  For the last six months, he has had a bad cough.  He finally went for an upper GI because his GP thought it might be reflux. The test showed nothing abnormal.  The GP then sent him for a chest CT.  We got a call from the GP's office that said "everything is normal".  I asked for a copy of the radiologist report, and here is the part that concerns me:

"There are two tiny peripheral sub pleural nodules measuring approximately 2mm, one in the right upper lobe and one in the left upper lobe. The post-contrast images show no evidence of abnormal enhancement.  

Opinion:  No significant abnormality.  No acute disease."

My question is, should I be concerned?  Should we press the doctor for some other test, or should I ask for a second opinion from another radiologist?  Are these nodules so small that there's no chance they are metastatis?  I don't want to be an alarmist, but he hasn't felt well for a while and is so very tired of the coughing and fatigue.  


Strength and Courage,


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Anonymous's picture
Replies 1
Last reply 11/5/2015 - 5:46pm
Replies by: Anonymous

My biopsy was sent to the pathologist.... and 9 days later i received word that the pathologist was sending my case out to a different pathology center for consultation...


Does anyone know why they would do this??


Proud Mommy to my little toddler. <3

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Anonymous's picture
Replies 1
Last reply 11/5/2015 - 5:06pm
Replies by: Patina

Because of my melanoma dx I had to have a chest x ray for some preop.  I'm hoping that someone can help me understand the results.  It's really unrealated to my melonama but so many of your are knowledgebgle in so many area's I'm hoping someone can help.


Findings:  Heart / Thoracic Aorta Medistinum and Hila all normal

Lungs and Pleura:  Hyperinflation.  Lung hyperlucency.  Question of subtle nodularity or artifact in the projection right anterior second rib 5mm at most in size.  Lungs otherwise clear, no pneumothorax.  No significant layering pleural effusions.

Osseous and chest wall structures:  Mild endplate osteophytes.  Mild dextrosocoliosis

Impression:  Underlying COPD


Question of subtle nodule versus artifact, superimposed structures right apex.  Lordotic View Advised.  Alternatively if high clincial concer, correlate with CT of the Chest.


Any insight would be appreciated.  I understand the COPD, although I do not have any symptons of COPD.  

:) Thanks

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Dear MPIP Community:

We are doing some research into support groups for patients diagnosed with rare subtypes of melanoma - ocular and mucosal. If you have been diagnosed with ocular or mucosal (including acral) melanoma and would like to help us, please fill out the survey HERE. It should take you less than 5 minutes to complete. Thank you in advance for your feedback!


Shelby - MRF


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jsagraves's picture
Replies 10
Last reply 11/5/2015 - 10:04pm

My name is John (age 41) and I was diagnosed recently in Sept 2015.  I'm in Stage III as my SNBs came back positive in the nodes under my right arm and neck, and I'm scheduled to have remaining nodes removed in those areas next week.  The PET/CT scan didn't reveal anything other than the inflamation from the removal of the sentinal lymph nodes.

I've been to a couple of oncologist locall, Dr. Nanda (at SOIN) and Dr. Jeter (OSU), and everyone tells me full node removal in these areas is the next step.  I realize this full node removal is the "industry standard" as we try to get out in front of this, but I'm really having a tough time with it and the visible scars that will come with removal in the neck area.  I think I've handled the initial diagnosis and everything since better than I'm handling the idea of a scar running the full length of my neck.

Does anyone have a contact for a melanoma specialist in the Dayton/Columbus (OH) area?  Would I benefit from any of the new medications released?  Do all clinicals and newer drugs require full node removal?  Is anyone familiar with the Infusio Concept (

While at this point I'll probably move forward with the full node removal, especially since I was given positive results in 2 areas and all 3 of the nodes that were initially removed, I'm trying to get my next steps in order and decide which route to take...interferon, clinicals or other alternatives.

It seems most doctors I've spoken with don't have much conviction in interferon treatments.  I understand that is why clinicals are taking find something more effective (hopefully with less side effects).  I was told interferon is only effective in 40%, but that seems better than going with an unknown clinical, where there are limited results to determine effectiveness.  However, interferon seems a pretty daunting process with it's side effects too.

I appreciate the thoughts and testimonies here.



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Daisyduke's picture
Replies 5
Last reply 11/7/2015 - 12:54am
Replies by: Anonymous, DZnDef, Daisyduke

Hello All,


Well, I have had my 2nd and 3rd opinions and probably going for my 4th.  I have Stage 4 Matastic Melanoma in my Lymph Nodes.  I had the surgery to remove the cancer in two Lymph Nodes and all the rest of my Lymph Nodes removed in my lower groin area.  So as of right now probably no cancer.


2 of the Doctors want to do the Wait and rescan in 2 months being that if they start Keytruda or Opdivo there is nothing to to go after and why put my body through the therapy.  There is no way of knowing if it is woiorking if there is no tumor. The other doctor wants me to start the therapy right away because he says it would work on microscopic cancer.


I am very confused on which path to take and I am doing a lot of praying, waiting for some kind of guidance to make the right decision.  I am leaning towards the Wait and rescan option . Is there anyone else who is dealing with a similar situation?

I know that once you start the therapy it alters your immune system and there are many risks involved, Crohn's, Colitis, etc. and I could be taken it indefinitely,  I have also heard that it aonly helps about 40% of the people.


I know this is a great suport group, and this decision is mine to make it is just so hard to make.   I am exercisng, joining support groups, using positive thinking and have completely changed my diet and taking supplements.  I  am lookinginto meditation and anything else I can do to keep this ugly desease away.


Any insight and help wouldbe appreciated.



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Debbieamccoy's picture
Replies 2
Last reply 11/5/2015 - 10:44am
Replies by: chaseo, gregor913

Had a mole removed today and worried the derm doesn't think it's any thing but wanted to be safe. Still I'm worried it was quite small but she thought it felt spongy 

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gregor913's picture
Replies 3
Last reply 11/5/2015 - 9:30pm
Replies by: gregor913, JoshF, jvictoria

I was researching hospitals in my area and I came across Loyola Hospital out of Maywood Illinois. Anyone here ever heard of Dr. Joseph Clark. I see they also offer clinical trials which I heard is a plus.



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jvictoria's picture
Replies 21
Last reply 11/9/2015 - 7:44pm

Stage IIIB, full lymph node dissection righ arm. Recently began clinical trial BMS-238 which will require infusions on an almost weekly basis. Since I can only have infusions on my right arm I was considering getting a port to help with the amount of times I need to get stuck every week and hopefully save my veins from eventual collapse.

Anyone have experience... pros/cons they can share? What kind of ports are out there, etc? What linitations will I have (sports, etc.)...



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Nell's picture
Replies 3
Last reply 11/6/2015 - 12:09pm

Has anyone had ankle swelling on these drugs? Is this something to be concerned over? Thanks for the input.     Nell

One voice can make a song; one life can change the world.

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JoshF's picture
Replies 12
Last reply 11/5/2015 - 5:58pm

The scan came back negative other than uptake in right shoulder. I'm an avid weightlifter and have had some issues with right shoulder and images showed it was in musculature structures so oncologist isn't concerned. It's been an ongoing issue...some times are better than others. Anyway that was a relief.

So plan is to move forward with surgery which I hope to set up ASAP. In the interim, my onc is looking at options. Again, the concerns are what all of us are aware when it comes to adjuvant measurable disease, efficacy and side effects. She wants to get best plan in place and will have something by month end....anyone know of any good trials?

Thank you everyone for your support and's nice to have a place like this where people support you, offer sound advice and simply just understand what you're going through. I'm very grateful to each and everyone of you who read, respond or just sympathize. I don't get very emotional but I about collapsed in exam room this afternoon. I just pray for the day where they can find a way to beat this back for advanced staged patients and not have it become the ball & chain it is. Yes, we go live life and enjoy everyday but it'd be so much nicer being a wee bit lighter!!!

Be well...check in soon.


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

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brittanyx's picture
Replies 1
Last reply 11/4/2015 - 8:30am
Replies by: geriakt

Hi, my name is Brittany, I'm 20 years old, and I was diagnosed with stage lll Melanoma last year. I created this topic for anyone who needs someone to talk to! 

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dfeng's picture
Replies 4
Last reply 11/4/2015 - 2:14am

It is being a long vacation that I am away from the keyboard and now I am back.


I am still in process of a long list of screen for the next trail, hopefully start on the end of November. 

It is still a kind of immunetherapy, but in early stage. I will have to be admitted to start the infusion, so that if anything is wrong they can do something quick. Kinds of sound scarly. 


If I remember it correctly, it is called anti-DC3. 

D. Feng

My record of progress on the first ipi/nivo trial is here:

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