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.

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Hello. I am here to the online community. Looking for some guidance from others who have been or are going through this.

First, some melanoma history:

1.  My father died of metasized melanoma at age 70. He had a mole on his back and it changed and he didn't get it checked in time.

2. This January, at age 58, I had a superfical spreading melanoma removed from my right shoulder. It was a nonpigmented lesion that I think had been there three, maybe four at the most, months. I actually thought I'd scraped my shoulder; it sort of faded and returned. I missed my regular yearly skin checkup due to other family members' health issues so I kick myself. But I was lucky. It had no depth, no ulceration. Was melanoma in situ. I had the followup surgery after the biospy and they got it all. Note: When I went to the dermatologist, the PA said that he just thought it was a basel cell and only twice had he seen a melanoma in 10 years. Go figure right.

So - to followup I get my skin checked every three months. And in between, because I'm now perhaps overly cautious, I go in if I see anything else. (A note here - it's often two weeks to get in and it's always two weeks to get my biospy results - Does that seem like a long time? )

3. Since January, I've had several moles removed and they came back fine.

4. Since January, I've had three definite and one possible actinic keratosis frozen off my left eyebrow. Precancerous, the PA said. No issues.

And now for the issue and the real reason for my posting.

5. On Oct. 27, I had my regular three month skin check. All was well. This was when my PA - who I think is pro active and always listens to me - froze two of the Actinic Keratosises. While I was there, I asked her to remove two moles on my stomach. She did. One was small and it came back fine. The other one came back with "severe atypical cells." I go in for more surgery Nov. 24, although I'm hoping to get that moved up but don't think the schedule will allow.

Here's the issue:" THERE WERE NO CLINICAL SIGNS on this mole - and yet it comes back with "SEVERE atypical cells." In fact, four different medical personnel in this practice have looked at this mole, sometimes as regular checkups and other times at my questioning, and NEVER saw any reason to remove it.

SO here are my questions and if anyone can answer any or all of them I would be most grateful.

1. Going forward, what do I do about moles on my skin? How can I be sure that there's not another one of these "nothing looks bad but it's bad inside" moles? Do I insist on EVERY mole that's bigger than a certain side or isn't completely round or I just don't like be taken off? I'm ready to do that! That frankly is my major worry - if you are supposed to get checked and watch for evolution or changes but there aren't any and it's still severe atypical cells, is there any way to be MORE pro active?

2. And now I have questions about what I've been told by the nurse and the PA regarding this severe atypical celled mole. First the nurse said it "is not cancer" and then said "it's pre cancerous." Then she said that it was sort of like the actinic keatosis. Then she said that they're take a bigger chunk of tissue and send it off "to see if there are any more cells" and then she said "to test to see if it's melanoma." And I said Wait, you just said it's not cancer! And she sort of backpeddled and said, "well that would be rare.

3. Now to the information from the PA (my regular PA isn't in the office this week so I talked to another one) He said that "you have nothing to worry about." And that "you never know if these things will be turn to cancer or not." And he dismissed my question about why no one thought on exam to remove this mole and it's got severe atypical cells. And then he said that really concerned me "You know there's a fine line between severe atypcal moles and melanoma in situ. Some pathologists would say it's one, some the other. It's like a political debate." And then on my questioning, said oh, no it will be fine.

4. The PA also said there were "just a few severe atypical cells at the edge" and not deep into the sample.

So there are my questions/concerns. I would appreciate any direction.

Also, the entire year has stressed me out. I spend lots of long nights looking at every spot on my skin, trying to catch the cancer before it gets me. It's totally destroyed my emotional balance and I feel like I've got nobody to talk to. So again thanks for any help/advice/suggestions




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Bobman's picture
Replies 3
Last reply 11/11/2015 - 4:03pm
Replies by: stars, Bobman, Janner

I am  now up to 6 primaries. Besides  that, I am producing  more lesions  at an incredible  rate lately . Depending  who I  see,the opinion  varies  on  what is the best biopsy  method . My surgeon  prefers punch,while most of the dermatologists have performed  shave. I know most of what I've  read here suggest  punch. One thing I don't  fully understand , is if on a large lesion  I get the punch,could the area punched be ok,while the other part of it be malignant ? 

Thanks  in advance  for any help,

Aloha , Bob

We are one.

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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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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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Debbieamccoy's picture
Replies 8
Last reply 11/10/2015 - 6:47pm

 So I stayed out of the ER a whole 24 hours and came back for vomiting. The ER dr walks in after all testing and announces I am very sick I am septic with a Wbc of  12 . 4 a febrile stable vitals. I have pnuemoniaMy liver enzymes are out of wack . Duh I have liver mets. Then he tells me I have wide spread mets to the lung ( I don't remember any biopsys!)then he asks have you and your family discussed hospice . I'm so mad scared and confused at this point. I'm getting transferred to Washington u where my oncologist is and he's out of town until day after tomorrow . Wish me luck . If it is melanoma I hope I can continue Ipi/nivio 

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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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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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