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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What a weekend , was admitted for all the above this weekend . Finally got b/p and heart rate normal . Sodium rising and slow increase in albumin. I have liver mets and have had 2 rounds of Ipi and nivio .. Does it ever get better . I'm increasing my diet to increase protein but will it help with the abdominal ascites . I'm feeling like a hot mess . My liver labs are stable my LDH dropped 4000 , but it seems for every step forward I go back 4. I need some encouragement 

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Millykamp's picture
Replies 8
Last reply 11/14/2015 - 5:16pm

Hello everyone Since FDA approve Yervoy for stage 3, I was wondering if anyone had started on it? For the ones that has been on it what is the pro and con of it?? I am stage 3 and about to meet with the melanoma specialist next week to see about treatment plans a since this is all new to me. I have one positive lymph node out of 17. Any kinds of helpful question I should ask would be great.. Thanks


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Scooby123's picture
Replies 5
Last reply 11/8/2015 - 8:32am

Hi all, I have just been for my 3 month check up with my oncologist and to sort out scans. On arrival we was seen by another of his second commands in charge. I wanted to speak to my oncologist due to I am going to another hospital to see a consultant who just deals with melanoma. Mine deals with head, neck, lungs, melanoma. I want to explore treatments I do not have the braf gene so ippi was my first treatment with 50% reduction in all my cancer. After speaking with the second in command oncologist he said that my consultant said scans every 6 months. I said surely not due to me having lungs, liver and others scatterd around even one next to my heart.  I wanted to also explain my reasons for going to see another consultant . It is not that am not happy with him but past experience been reassured all ok  and it was not I feel I have to be on the ball with this for myself. 

Anyway the other consultant brought my consultant in so I could explain to him my reasons for seeing another consultant, he only does NHS patients this other consultant could recomend other private treatments who knows till I have seen him. He was Fine about it and I mentioned chemo saturation to the liver he replied you have not a problem with your liver. I said I have 3 tumours on liver, he just looked at my notes. This is not my first time seeing him so he should know my situation .

well how would you guys feel if your consultant did not even know we're your tumours are. 

I do not feel bad now in seeing some one else after today, but you have to do what's best for you.


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Anonymous's picture
Replies 6
Last reply 11/8/2015 - 11:07pm

Just recieved biopsy report - desmoplastic melanoma .85 mm depth . The lesion was on my upper arm--It was sore so I went for my annual full body exam.  Now my dermotologist - who I love- says just excise it and I will be fine.  His partner agrees.  I have had my report and slides sent to NYC where I will be seen next week 11/19/15 by a melanoma specialist.  Any tips for me or questions I should ask? Thanks and God bless all of you

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chrisholder's picture
Replies 8
Last reply 11/13/2015 - 4:02pm

Hi, all,

I posted about a week ago for the first time, wondering if there were people reading who have mucosal melanoma.  Mine is in the maxillary sinus & was diagnosed in May of this year; started Ipi/Nivo soon after but had to stop after only two infusions due to severe side effects and hospitalization.   Am now on Pembrolizumab (Keytruda) & so far tolerating it.  Would be very eager to hear of others who have MM, what your treatment is, how it's going, how you are managing the side effects, etc.  Unfortunately it's only 1% of all melanomas and so there's far less statistical history and information tha for the other 99%!

I read this and several other patient-based cancer sites/blogs regularly and am contnually moved and uplifted by so many patients' courage, determination and - in the face of this awful disease - humor.  I pray for everyone's peace, comfort and improvement.     Chris

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davekarrie's picture
Replies 4
Last reply 11/12/2015 - 7:34am
Replies by: davekarrie, paul, Bubbles

Hello all,

I was on a clinical trial with Keytruda and IDO inhibitor, but my lung mets are growing close to my heart and other lymph node masses bigger in chest, in addition to one on left adrenal gland and kidney giving me pain at times. Was rushed to ER on Sunday with so much pain. Anyway, I know the Taf/Mek combo usually works for BRAF but is limited to around 9 months or so. I am wondering for those that have done Taf/Mek how you are doing, are you NED, course of treatment etc.?  I just want to get ducks in a row if this fails and we have to shift gears again.  My oncologist said once tumors shrink with combo we weill come back in with another PD1 before the combo stops working.  Much love to you all and thanks for any help! Dave

Live life to the fullest and enjoy each day! #noonefightsalone

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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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