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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josephsli's picture
Replies 4
Last reply 4/24/2015 - 12:13pm
Replies by: jessann, POW, josephsli, Janner

Hi, 

I am an Asian male, 34, and have had a mole-like lesion on my right arm since I was very young (or even likely born with it) for as long as I can remember, and more importantly, its size and shape has NOT changed at all since at least 15 years ago when my parents and I I started observing it. 

In late June, I went to see a dermatologist for a separate condition (a mole on my face), which the doctor very quickly dismissed as anything alarming but believed that the congenital nevus on my arm closely resembles the typical melanoma: blurry boarders, asymmetric shape, etc. The only counter-argument I had was that it has NOT changed at all for at least 15 years. The doctor then advised that a PREVENTATIVE full excision be performed, even it was NOT likely a melanoma due to my race, age, which I followed and the full excision biopsy was performed. 

2 weeks later (just today), the pathologist's report came back with a shocking melanoma diagnosis:

'right posterior arm, malignant melanoma, approx. 0.4mm tumor thickness with associated congenital compound nevus, 0 mitotic figures per mm2, nonulcerated, completely excised on all edges and in depth.

comment: ki-67 would be of value to better interpret the dermal cells which, although they resemble the epidermal cells, merge into areas of congenital nevus with areas of maturation.'

In 'layman's language', the doctor told me:

1) according to the 1st pathological reading of the biopsy sample, this is a malignant melanoma

2) based on info presented, it looks like a Stage I, but we have ordered staining (ki-67 is actually a protein)/enhanced specimen processing ('2nd pathological reading') to see if my melanoma cells are REALLY contained within the 0.4mm depth vs. having already spread

3) regardless of the 2nd pathological reading, a 2nd excision surgery needs to be performed ASAP to remove an even larger area, but the 2nd pathological reading will determine how deep/wide this 2nd excision will be. 

My questions at this stage is simple - could the 1st pathological reading have been 'a false positive', considering the fact that my lesion has NOT changed for at least 15 years (not months!)? I read somewhere that about 16% melanoma biopsies result in false positives, however they usually occur during partial excision (my case was full excision). Also to my 'disadvantage', both my dermatologist and his dermatological pathologist agreed with the melanoma diagnosis. 

Any opinion or references will be helpful. I have a loving and supporting yet vulnerable wife, a 3 year old girl, and a 25 day old son. Your prayers will be greatly appreciated.

Thanks

Joe

 

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flaglerjoe's picture
Replies 7
Last reply 4/24/2015 - 10:04am

Anyone else have the SLNB weeks after the WLE? They initially measured my melanoma as thin based on the punch biopsy, and after the WLE, pathology showed that it was actually a 2mm depth. Tomorrow I am going back from the SLNB that they did not do initially several weeks ago. 

 

I know this isn't ideal but I wondered if anyone else had theirs a while after the initial WLE?

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newmanmark's picture
Replies 4
Last reply 4/23/2015 - 6:18pm
Replies by: newmanmark, Ed Williams

I was wondering if anyone has any information on the treatment for melanoma mentioned in the last paragraph of this article.  It looks like there's some major progress being made.

http://ottawacitizen.com/news/local-news/ottawa-scientists-hail-viral-st...

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tomw65's picture
Replies 1
Last reply 4/23/2015 - 5:02pm
Replies by: Mat

How long after the four ipi  infusions before testing to see if anything isworking or not

hazel43green

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dentholla's picture
Replies 18
Last reply 4/23/2015 - 9:07am

I posted a few weeks ago about my husband being newly diagnosed with melanoma.  He had a shave biopsy that I was not excited about (method) and pathology results that were all pointing to >than what was estimated.  As it stands we received the results back from the SNB and the node (in parotid)  was positive for microscopic melanoma cells.

His melanoma was on his temple, all removed and all told 1.5mm (over twice what the shave said it was) and UT Southwestern thinks the surgeon did appropriate excision of 1cm.  So for that we feel grateful and do not have to do another WLE.

I need some advice guys.  We feel lost, helpless, and while I have been on this forum for weeks now he has not.  We haven't really been able to talk about all of this until today.  We are getting a 2nd opinion next week at Baylor (Dr. Cowler is who our ENT referred us to) and I understand there are some on this forum that are participating in Stage III trials at Baylor.  I'm interested to hear if anyone has feedback on that.  Also, UT Southwestern recommended a PET scan before we proceed with the moderate neck dissection to see if it has spread.  Is this a normal course of action?

Thanks, sorry I'm all over the place.  I honestly don't know if I can catch my breath still.  I am trying to stay positive and let him know this isn't a death sentence and a lot is being done now to treat and prevent reoccurrence.

 

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Jeffreyd's picture
Replies 3
Last reply 4/22/2015 - 11:35pm
Replies by: Anonymous, Julie in SoCal, mary1233

Hi All - First time posting here. I have stage IV melanoma that's spread to the brain and liver. I've done TIL therapy at NCI and have been on Dabrafenib/Trametinib for about 7 months. I'm planning to start Yervoy soon but would really prefer to do an anti Pd-1 (Keytruda or Opdivo) first if I could. 

Does anyone have experience getting insurance to pay for Keytruda or Opdivo before Yervoy? I understand it may be easier now with the NCCN guidelines and with the new studies coming out this week in the NEJM. Any suggestions?

Thanks!!!

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Speedster's picture
Replies 9
Last reply 4/22/2015 - 11:22pm

Today I was patient #1 at Baylor Samons for the Yervoy (Ipilimumab) vs. OPDIVO (Nivolumab) Phase III Clinical Trial.   Designed for Stage III patients - resected tumors, NED to determine if either is effective as an adjuvant therapy.

The trial will have 800 participants across the country.  Who else is in and what are you experiencing as you ramp up the treatment? 

Nothing noticeable for me after the first treatment today.  

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newmanmark's picture
Replies 5
Last reply 4/22/2015 - 11:55am

Hello,

I started Mekinist and Tafinlar today and I'm looking for some positive stories from people who are having success with this treatment.  I am 35 years old and stage 4.

Thanks

Mark

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Anonymous's picture
Anonymous
Replies 5
Last reply 4/22/2015 - 7:35am
Replies by: Anonymous, jennifer83

Good Morning:

I was wondering how many on this board started as a stage 1a or b, progressed to a later stage, and the time frame of the progression.   I was dx stage 1b in June 2014 with a nevoid melanoma and I know that my chances of never having to deal with melanoma again are excellent, I still can't completely move past the thought that it one day will resurface.  

I find myself coming to this site often not just as a resource but to silently cheer on and offering up prayer to those who are so bravely fighting this awful beast.

Blessings to you all

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/21/2015 - 6:22pm
Replies by: Ninniditti

Does mucosal melanoma respond to immunotherapy treatments differently from cutaneous?  My father has a ery high tumor burden and was just taken off one of the pd-1 trials after only 2 mts since his scan showed many new nodules and no improvement.   His oncologist is now recommending yervoy.  Have any of you had experience with a similar situation?  

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/21/2015 - 2:56pm
Replies by: Janner

Hello,

I unfortunately am not new here.  Although, I have been fortunate that I have never gone to this board to get information for myself, I now need it for a second family member. 

Here is what I know:

Diagnosed with superficial melanoma less than 1 millimeter thick.  I have not seen the path report yet to know whether or not there was ulceration or what the mitotic rate is.  The WLE was done last week and the path results are not yet in.  Met with oncologists today and they are opting to do a PET Scan.  Seems to me this would classified as Stage 1A or 1B and the SLND should be warranted.

Thoughts?

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Twistermom3's picture
Replies 2
Last reply 4/21/2015 - 1:50pm
Replies by: Anonymous, Julie in SoCal

I had my first check-up after a WLE in October on my back for an in situ melanoma and full body check. The dermatologist described the scar on my back as keloid. It is irritated. The MD suggested steroid injections and I declined. The thought of annoying the scar more made me shudder. The scar is slightly raised . Has anyone done this for a scar?

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Hi all,

We're working with a reporter who is writing a story about skin cancer in Latina women. If you or a loved one is Latina, has melanoma and would like to share you/their story with the media to raise awareness of this cancer, please contact media@melanoma.org. Thank you!

Lauren - MRF

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"Acute heart failure due to autoimmune myocarditis under pembrolizumab treatment for metastatic melanoma...... it is important to be aware of such rare, but severe immune-related adverse events."

http://7thspace.com/headlines/506871/acute_heart_failure_due_to_autoimmu...

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