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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Boo79's picture
Replies 4
Last reply 11/11/2015 - 1:24am

I posted on here over the summer regarding a couple of moles I had to have removed. They didn't look weird to me at the time. They weren't symmetrical, but they hadn't changed either. One came back severely atypical and the other moderate to severe. I had a third one removed later which came back moderately atypical. The first two didn't have clear margins so I went back and got clear margins. Janner was wonderful with her response of watching from now on. In the meantime, I was getting really sick...ended up not being mole related. I had tick illnesses. But while trying to determine what was wrong, they did ct scan and MRI of abdomen. They came back with multiple lesions on liver. The radiologist said the large ones were hemangiomas but small ones were probably cysts. I am just concerned that maybe they missed something and it could be more than that. 

Now back to the mole removal. One of the incisions was near another mile and when I was stitched up, the other mole was stitched into it. This mole seems to be slowly making its way across my scar now. Just a tiny bit. It has been three months since stitches were removed, and in the last couple of weeks, the scar is itching like crazy. 

Should I be concerned or am I over thinking all of this???

one more long does a full body mole check normally take? The derm looked over my body in less than one minute. Never had me stand up. I have one abnormal looking mole on the palm of my hand and she didn't remove because she said it would be uncomfortable for me???

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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 0

An unusual mole popped began itching and burning on my calf a while back.  A biopsy was taken two weeks ago and the diagnosis came back stage 1B.  I just regestired on the site and feel lucky to have found the community.  I appreciate what I have learned so far just from reading the posts and hope to stay informed and in charge of my treatment.

Thanks all!

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Anonymous's picture
Replies 9
Last reply 11/10/2015 - 2:51pm

Hi all!!

I've been reading some posts related to the diet that one should take to fight somehow melanoma. Some people say it is better based on alkaline foods and others in an acidic diet.
My sister has been doing a varied diet, with fruits and green vegetables and she has tried to limit some refined foods and sugar, and tries to eat many nuts. She is also taking supplements like curcumin, ip6 inositol and purple mushroom, and green tea.
I wonder if there is any scientific study based on which diet one should follow, some people say that melanoma grows in an alkaline environment and others in an acid environment. Which one is better alkaline or acid?
What diet / supplements should be follow? Any advice is welcome !!!

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Hi all,

The FDA just approved Cotellic (cobimetinib) to be used in combination with Zelboraf (vemurafenib) to treat advanced melanoma that has spread to other parts of the body or can’t be removed by surgery, and that has a certain type of abnormal gene (BRAF V600E or V600K mutation). Data showed that patients treated with the combination experienced a median of 12.25 months with no tumor progression, compared to 7.2 months for patients on vemurafenib alone. This approval means melanoma patients with this specific gene have another treatment option to fight their cancer!

Read the MRF's statement here.


- Lauren, MRF

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A friend of mine asked for any recommendations for a Derm in Sarasota. Any ideas? Anyone to avoid?


Work hard, but play harder.

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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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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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Anonymous's picture
Replies 3
Last reply 11/9/2015 - 11:06am
Replies by: Anonymous, CHD

Hi, just wanting to see if there is anyone out there with vulvar cutaneous melanoma?  I have seen posts from several with mucosal-type but wondering about cutaneous.  Would love to hear your stories and what you have been treated with, and how you are doing.  Thanks for sharing!


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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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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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