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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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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My daughter has had Yervoy already and now has had 7 infusions of Keytruda. The Keytruda has kept it from spreading, but the tumor is not shrinking. She is BRAF positive but is being allowed to do this treatment. Has anybody had success with tumor shrinkage with this combo? How were the side effects?

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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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Coneflowers's picture
Replies 16
Last reply 11/6/2015 - 9:36pm

Was wondering if anyone had there lesions grow when the first started PD1? My daughter is on Opdivo and after her first 2 doses her lymph node in her neck enlarged. She also has a skin bump that seems to be growing.  Her doctors tell me that it is known that things can get bigger before they get smaller, from the immune system attacking the melanoma but I am nervous.  She just had her 6th dose and everything seems to be getting bigger. I should add that her first 2 doses where not at full dose. She has a pet scan scheduled in a month. Her one liver number has come down and is now in normal range, it was climbing up. She has mets in her liver. Thanks in advance! 

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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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Momofjake's picture
Replies 8
Last reply 11/6/2015 - 10:00am

Hi there friends,

i have missed you but it's always good for us to take a little cancer break if we are so lucky to be able to! If you remember my 18yr old son Jake is stage 4. He has mets everywhere but brain. He has had 7 treatments and has scans again Nov 19. His last scans showed major improvement in bones, spine, skin, femurs etc. stable and less active in lungs and liver. One new tumor in his chest. Overall we were happy! Jake looks really good! I really thought I would lose him in June....but keytruda....a miracle right?!? He only has fatigue and is back at life mostly. His treatment was TH and I just got labs posted online. His LDH tumor marker was up. His highest while growing rumors like crazy was 180. It's been way down the last few months but popped back up to 161 this week. Should I care? I haven't told him. He is 18. He can look if he wants. But really he just wants to live his life. Never ever do we talk cancer!! 

Jake did just start a charitable foundation. It's called "Jake's Hope". He is going to give mini wishes to cancer kids! All his deal. He is doing a few other things too. Finding his voice just a little. Happy mom:) Glad to hear some of my old favorites in hear still okay! Prayers, love and lots of pure toughness shared here!! Thank you! And all you new peeps, welcome! This will be a really important place in your life. 

Kerri--mom of Jake

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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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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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Anonymous's picture
Replies 14
Last reply 11/5/2015 - 6:04pm
Replies by: Janner, kdhill, stars, chaseo, Anonymous, Christine.P, geriakt

So I was referred yesterday by my doctor since I noticed a mole on the left side of my foot, don't remember if I had it for awhile or not since it's not a area i look at all the time plus my memory isn't that great. My sister thought it's been there but Im not sure. The doctor said the color was too black which made her want me to get seen and the borders weren't sharp plus it was asymmetric. I put up the picture since I really don't know. It was measured at 2mm. I'm seeing the dermatologist on wednesday, but i'm still scared now and freaked out. I'm 26 and of asian indian descent. 

What factor does color play into a melanoma diagnosis? Is darker usually an indicator? If it is melanoma is the fact that it's super small in diameter good for potential staging if it unfortunately a cancer? I don't sunbathe either or tan, no one in my family has had melanoma from what i know. My dad does have lupus with a possibly cyst on his kidney and my mom had a stage 1 pineal gland tumor that was removed for a family background. 

Is the fact that it is relatively small 2mm mean anything or are there there situations where it is small, but penetrates deep?

If this is inappropriate to post I do apologize I was just hoping to get some information from people who have experienced this similar situation since my PCP was not very helpful at all at answering any of these questions

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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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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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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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