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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MelanomaMike's picture
Replies 2
Last reply 12/19/2017 - 9:33pm

Hay folks! hope this finds you all well & kickin some Melanoma Glutious Maximus!.. as i stated a few days  ago, i sucked up my 2nd delishous bag of Pembro, and boy im feeling blah! like i told another family member here at MRF, I feel like i have the beginings of the Flu everyday! not full on mind you, like the "Pre" feeling. Low energy, just all round blah. Then my weird issue with my Tattoos which i told you about, that their "raised", "bumpy" like "Braille" for the blind! lol..Pembro is obviously doing its job if its attacking my tattoos right? they arnt suppose to be there!..ill see my Oncologist soon, i plan to talk about my tiredness, im thinkin its because of "where" my tumors are located, "Lungs"...anyways, just checkin with you, i really hope everyones tumors are shrinking and or disapearing! i look forward to my 1st scan to check my progress!..

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CPM0720's picture
Replies 7
Last reply 1/10/2018 - 5:54pm

My husband was diagnosed with Stage IV Melanoma in September of this year. It started on the skin but had spread to the lymph nodes, liver, lungs and bone. So we know it is bad and wide spread. He received 4 doses every 3 weeks of Opdivo and Yervoy. The place on his skin got SO much better. It was large and open and had been oozing. It is now small and not open... however his CT scan shows growth of tumors inside. The doctor was shocked - had not seen that before.

Anyways, they are now moving us to targeted therapy treatment. He will be taking Trametinib (Mekinist) and Dabrafenib (Tafinlar). They told us these meds only usually work 6-12 months. This doesn’t sound great to us as he is 47 and we have 3 young children.

Have any of you done this and it worked longer? Or when the melanoma did come back, what was your next option? I am also wondering if anyone has ever done this to get their tumors in check and then move back to immunotherapy.

also would doing any of this, hinder him from clinical trials? Any knowledge would help.

we are also working on getting a second opinion. 

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ThinkingPositive's picture
Replies 4
Last reply 12/22/2017 - 6:06pm

Hello, if you have not read this delightful essay by Dr. Gould, I hope it will lift you up!


Was lentigo maligna melanoma IIA on nose. WLE 10/30/17and graft 11/10/17. 

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Anonymous's picture
Replies 4
Last reply 12/19/2017 - 2:27pm

Hello all

I recently had an excisional biopsy on my forearm for a pink lesion (5mm diametre)... I had (perhaps stupidly) used a few topical treatments in a vain hope of eradicating it beforehand, whilst waiting for appointments. So at the time of excisional biopsy it was inflamed, and slightly sore.

Fast forward: Excisional biopsy was 1 month ago... I was told that results would be around 2 weeks (I am in UK). 

At the 2 week mark, I was informed that HALF the histology report was in, with various queries for the doctor... And although my dermatologist was unable to give me a report, she said that I should not worry about it (she had obviously seen the 1st half of report)...

So 2 weeks later, and various nuisance calls to the dermatologists office, nothing has come back yet??.

The dermatologists secretary, explained that sometimes biopsies go back for further staining, for further information etc... but that obviously she was unable to comment, but to listen to the dermatlogist and to not worry.


Easier said than done.

Surely if it was 'nothing' it would be back by now??

Why only half a report?? The secretary did say that this happens sometimes... Although, I never know when I am being fobbed off!

Anyone else only get half a report??

Would appreciate anyone's insight, I tried to take the dermatologists advice, but I'm feeling uneasy, as she initially told me, the longer a report takes the more worrying it is, as the pathology/histology get checked for a 2nd and 3rd time, for definitive diagnosis. This is how it works apparently here in UK...

Many thanks

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MovingOn's picture
Replies 4
Last reply 12/21/2017 - 9:03am

I’m getting my first scan since starting Keytruda. It will be a CT scan. However, all my previous major scans have been MRIs. This one started out as an order for an MRI which my insurance approved. Then the Radiology department consulted with my Oncologist and the order was changed to a CT. My insurance questioned this change but my Oncologist discussed it with them and it is now approved.

My only hesitation with a CT scan is that in May I had a CT scan because of symptoms of hypophysitis (I was on Ipilimumab at the time). They came back and said the CT showed everything in my brain was fine. I then had an MRI three days later and it said my pituitary was more than double the size it had been 3 months earlier (hypophysitis). So I lost all confidence in CT scans at that time. Hopefully my loss of confidence was misplaced and there is nothing about a CT scan which would make it inferior at identifying melanoma progression compared to an MRI. I guess I’m just venting to get some energy out while I await my results.

2018 is a new year!

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John Bruno 2613's picture
Replies 1
Last reply 12/18/2017 - 10:03pm
Replies by: ed williams

My brother had two melanomas in less than a year. He is getting checked every two months at Mayo Clinic and he had several atypical moles (more than 10) It says that people who have more than 10 are 12 times the risk of developing melanoma compared with the general population. Recently he had a benign mole taken off, however, it extends to the deep margins. Since it is in the deep margins and we can no longer see the mole or monitor changes should we re-excise it? I think it might be a bad choice to not re-excise it since benign moles can turn to melanomas. Leaving a cell in the deep margins could not be good because by the time you spot something wrong it could be too late. That is the way I am asking someone with experience with what my brother is going through to please reply. Thank You

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WendyI37's picture
Replies 9
Last reply 12/22/2017 - 5:44pm

I was diagnosed with Stage 1a Melanoma on December 6th, 2013. It was .30mm, no ulceration, 0 mitosis, and no other negative prognostic factors. My follow up treatment was WLE, skin checks every 3 months for two years, then every 6 months since. Now I'm confused. I went for my normal skin check last week, everything looked good, but my dermatologist ordered for a chest X-ray and blood work to check my Ldh1. Being a very anxious person anyway this freaked me out. I mean out of these 4 years, I was never told I needed any if this stuff and now all of a sudden it needs to be done? If it was something that was suppose to be done why not when I was first diagnosed? Now I'm waiting for the results freaking out, thinking the worst. Has anyone else had to do this for a 1a and did they wait 4 years out before requesting such tests? My dermatologist was diagnosed with breast cancer, she had surgery, and chemotherapy. She is cancer free now, but is she just being extra safe since her diagnosis? Any and all answers will help. Thanks in advance.

Wendy Ingram

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lkb's picture
Replies 8
Last reply 12/21/2017 - 9:34am

Hello excellent discussion group!

Primary scalp lesion excised in October; SLNB revealed two nodes involved. Stage IIIA. Willl have PET/CT in 3 mos. Getting good care at UC San Francisco, but given the seriousness of the disease, want a second opinion. Prefer California, but could travel beyond. Does anyone have Second Opinion advice/experiences to share? UCLA? Block Center in Chicago? Some have phone/email programs? How to choose? I'm want to set up now for immediately post-Scan results. Good plan?

Thank you!


Primary scalp lesion excised in October 2017; SLNB removed and revealed two positive nodes. Stage IIIA.

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Peggy Nielsen's picture
Replies 6
Last reply 12/22/2017 - 5:21am

A spot on my face came back as melanoma.  It’s next to my nose.  My dermatologist recommended I have it removed by a surgical oncologist (in Illinois).  Problem is you can’t get in to see someone until January and I’m scheduled to go to FL on 1/4/18.  I think I might want to have this taken care of in Florida because they want me to have a sentinel lymph biopsy done and I’m not sure what kind of follow up might be necessary.  Also, I’ve had other melanomas (and basals) but nothing that required further treatment.  To be honest, I am freaking out.  Any doc referrals or other advice?  Thank you in advance.

Peggy Nielsen

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Anonymous's picture
Replies 2
Last reply 12/17/2017 - 9:30pm

I had a biopsy performed for melanonychia in my thumb nail. This is the second biopsy that was conducted, during the first my doctor did not remove my nail and failed to biopsy the correct spot. The second time she removed the half of my nail with the streak and biopsied underneath. She let me know Monday that the pathology showed a focal point of pigment. She also stated that the spot was very subtle but she believed that she removed it all. I received the pathology report today, I guess I’m confused by the comments regarding the specimen. Can someone please help? Based on my doctor’s observation do I need to continue to follow this, is this result inconclusive? 


1. Nail and nail matrix, matricectomy:
-- Nail matrix with focal pigment. (See Diagnosis Comment.)
-- No fungal organisms are identified on PAS-stained section.
Control worked appropriately.
No morphologic evidence of a melanocytic neoplasm is observed
however, interpretation is limited by the thin sample size. If this
represents a small portion of a larger pigmented lesion, we would
recommend close clinical follow-up and consideration for a larger
biopsy if clinically indicated.

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Anonymous's picture
Replies 1
Last reply 12/15/2017 - 7:33pm
Replies by: Janner


i was recently diagnosed with a melanoma Insitu and the report said I need a WLE with 10mm clearance. 

The surgery has taken place and the histopathology report states there was no malignancy seen on surgical sample and there was a 3mm margin. 

this 3mm margin is really concerning me. I called th doctor and he said he’d taken more out but the skin shrinks a before it gets to the lab. I’ve never heard this before. Does anyone know about this. I’m thinking for peace of mind I should have more cut out but not sure how to go about this. 


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Jubes's picture
Replies 4
Last reply 12/16/2017 - 12:18pm
Replies by: Prd10, jennunicorn, iskitwo, Anonymous

Just wondering that if you are having pet scans every three months if you still have to do the regular Pap smears and mammograms and other screening for other common cancers? I keep getting reminders but it’s hard to get up the energy for more tests thanks


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