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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jenny22's picture
Replies 14
Last reply 11/12/2015 - 9:21am

Hi All- After recent 2nd recurrence (last week), just had surgery today at MSK....very early today....home now.

Since this is 2nd recurrence docs (both surgeon, COIT at MSK and ONC Pavlick at NYU) are recommending a course of radiation in the hopes of preventing more local recurrences....

After surgery today, Dr. Coit told my husband it is as much an art as a science to get it right.....size of radiation field among other things.  In my case its more tricky since its on the NECK.

So my question is, wonder if i need RAD ONC whose specialty is Melanoma or Head/Neck....I know my docs will weigh in, but wondered if anyone here had any thoughts on this subect.

After Radiation of course trying to find/decide on adjuvant systemic treatment......

Must say, this is a little scary these days....

Any thoughts appreciated.


Best to all,



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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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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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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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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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