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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Gordknight's picture
Replies 15
Last reply 11/3/2014 - 5:35pm

Let me give you a bit of my background.  Also been a hypochondriac.  Well not always, but for at least the past 8 years or so.  Always worried that everything is cancer or something equally as bad.  Well today my worst fears came true.  After a week of waiting in anguish for my biopsy results to come in for two moles I had removed I got the call today.  One of them is Melanoma.  My soul dropped into my shoes and I instantly began to think about my wife and leaving her alone on this earth.  

Im a31 almost 32 year old caucasian male.  I requested my pathology report from my dermatologist.  I am meeting with a plastic surgeon on the 3rd of November since the melanoma is located on my neck.  Here is my pathology.  I dont know how accurate it really is becase he did a shave biopsy.  




Breslow Thickness: Favor 0.22 MM

Clark Level (not overall tumor stage): Favor II

Ulceration/max width: Not Identified

Mitotic figures: <1 per MM squared

REgression: not identified

Lymphatic Invasion: not identified 

Perineural invasion: not identified

Microscopic Satellitosis: not identified

Tumor-infiltrating lymphocytes: Non-Brisk

Associsated Melanocytic Nevus: Absent

Predominant Cytology: Epitheloid

Lateral Margins: non involved (1mm)

Deep Margins: Not involved (0.5 mm)

TNM Tumor Stage: Favor T1a NX MX


I am even more terrified because the other day my wife accidently knicked the scab that had formed after the biopsy and caused it to bleed.  Could this make the cancer cells spread into my blood stream?  I am so scared.  Can anyone help me?

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theresar's picture
Replies 4
Last reply 10/28/2014 - 9:39am

Quick review of history- I'm a 54 yo woman initially had vulvar lesion removed 3 years ago with clean margins and lymph nodes. Now Dx in early July 2014 with metastatic mucosal melanoma with lesions on my liver and lungs. Completed my 4th infusion of Yervoy 9/25 and on follow-up visit 10/23. My oncologist said he did not need a CT to determine that the Yervoy did not work. (i might agree with the status of my belly and my liver function tests are dangerously high, LDH soaring.)

I am  seeing a melanoma specialist and he has recommended 2 options  1) I can move forward with the Keytruda which would be the next step and he would obtation a CT as a baseline but he would reccomend the Keytuda very cautiously because of my liver function-he is concerned that the side effects on my liver could put me into failure quite quickly. Or route 2) He could start me on steroids and that would temporarily make me feel much more comfortable but obviously would not treat the tumors. A palliative care and likely hospice referral would come with this option.

I was told that once I started on steriods my option for the Keytruda would be off the table. Also told that Iwould not qualify for any clinical trials because  my liver function is so bad. I know that there are other treatments out there that have been approved. I do not have any of the genetic mutations ie BRAF, etc. identified.

I know that there are other options out there beginning with a 2nd opinion and certainly alternative therapies but just looking for thoughts experiences and advice. I do live in Michigan.....

Where there is Faith there is Hope!!


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Anonymous's picture
Replies 0

HI Everyone,


I will be in chat tomorrow night and will see who else I can find of the old timers,  Hope to see you there

Monday night at 8 PM EST

Hope you can jon us 

Love and Light

Carole K

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5dives's picture
Replies 10
Last reply 10/28/2014 - 6:54am

Hi all,

I am 45 years old, and I have recently moved from stage 1B to 3A because of a second opinion at Memorial Sloan-Ketterting that helped clarify some very iffy pathology results. The MSK doc called me T1bN1aM0, but did not want to say "3A". He preferred to say T1bN1a. To be honest, I don't understand his reluctance to say 3A, but I want you to have the full picture. My one lymph node had micro, not macro metastasis. The MSK doc said if it was a macro amount he would recommend CLND, but for my situation and my age, he thought it would be overkill. MSK does not do interferon. 

Overall, I felt very reassured by my visit to MSK and am oddly comforted by being told I'm T1bN1a instead of "just" stage 1b, because the MSK doc recommended 6 month scans. He also recommended being careful with brain scans as melanoma rarely goes to the brain without going somewhere else first. He said my oncologist at Loyola in Chicago could choose what scans he would like to do.

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Bubbles's picture
Replies 4
Last reply 10/28/2014 - 5:08pm

Hi all,

Saw this article from Clinical Oncology News, Oct 2014, last night and figured some of you might want to hear what the experts are thinking on the notion of anti-PD1 as a first line therapy for melanoma!!!  Quotes and a link here if you like....

Fingers crossed! Wishing you all my best.  Celeste

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Anonymous's picture
Replies 5
Last reply 10/29/2014 - 12:25pm

Someone on this list was seeing a doctor at Emory a while back but a search here did not turn up that post. 

Second question:  Can you contact someone privately thru this list?  Not chat, private email.

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Anonymous's picture
Replies 8
Last reply 10/28/2014 - 11:11am
Replies by: kalisama, Anonymous, Carole K, ecc26, JoshF, Ed Williams

My mother is at stage 3c . After 6 months of clean scans, we found in an MRI reoprt about her brain mets. She had absolutely no probelms. What are the options of treatement?

God bless you

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cbe's picture
Replies 5
Last reply 10/28/2014 - 9:55am
Replies by: kalisama, MattF, katie1, DZnDef

My husband is stage 4 with melanoma in the liver and lymph nodes. (Had  3 doses of ipi before switching to anti-PD1/Keytruda when it metastized to liver) Scan at 7 weeks showed spots still in liver but no new spread and latest blood tests had liver functions in normal range. So we are still waiting and hoping that the Keytruda is working.

My question is about prednizone which he's been on since August. He no longer has fevers, night sweats, headaches or any of the symptoms that caused him to go on the steroid in the first place and is now taking 10 mg/day. He's currently suffering from severe reflux which is not alleviated by Nexium and Zantac. He's tried going off the prednizone but when he does he's completely exhausted. We now understand you can't just stop.  Has anyone successfully tapered off from 10mg prednizone and any advice on how to do it, supplements to take, etc, to get the adrenal glands working again? There seem to be lots of different theories out there.

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Anonymous's picture
Replies 6
Last reply 11/11/2014 - 4:44pm
Replies by: lou2, Anonymous, Janner, kalisama, Carlos P

Anyone familiar with the use of dermoscopy or confocal scanning laser microscopy?  Both are said to be non-invasive.

Have had one lentigo maligna removed on back, big ditch there now.  Another one nearby just like it, said by different derm at teaching medical hospital said to be slow growing, just watch it.

Now I have a spot on forehead, thin skin only over bone.  It itches a little now and then.  Getting very scared.  Don't want another big incision, and don't know how they could do it at this location anyway.

So, looking for experience with these non-invasive methods.  And whether anyone knows of a place in the SE U.S. that does these first, before biopsy.


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Anonymous's picture
Replies 2
Last reply 10/29/2014 - 3:56pm
Replies by: democat, Emcjones1

My original path report listed Mitotic rate of invasive component : 17 per square mm. My oncologist has open notes. Every visit she list all my findings Clark level etc but every time she write 70 mitosis per mm2. What or is there a difference? Thank you , hope this make sense.

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BrianP's picture
Replies 3
Last reply 10/28/2014 - 5:54am
Replies by: rick1981, Bubbles, tschmith

I'm registered and planning to attend.  Would be nice to put some faces with some names if anyone else is planning to attend.  I'm going to try and take copius notes but it's been a long time so my note taking skills may be a little rusty.  I'll come back and post any good info I learn. 


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Robins269's picture
Replies 3
Last reply 10/24/2014 - 12:20am

Hi, I am just posting here because I feel like I need someone who knows something to give me an answer..good or bad. My question is: have you ever known an itchy mole to NOT be cancer? I visited the dermatologist over last winter to have a mole checked. He assured me it was a friendly mole. Not a month later it started itching. I recently called back and they say they need to see me ASAP. That itchiness doesn't usually occur with a mole they aren't worried about. Does anyone have experience? I have to wait two weeks now and I'm scared! I have four little ones and all I keep thinking is they are going to grow up without a mom. Sorry if it seems dramatic, I'm just a worst case scenario kind of person.

Thank you!

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FayFighter's picture
Replies 9
Last reply 10/29/2014 - 8:58pm

I have come to this site for hope countless times. Hoping this post helps someone like you all have helped me. A shout out to Celeste who originally planted the seed regarding this trial.

CT scan today (8 wks out) show 30% reduction in liver lesions. 

Thank you.



Recap re my husbands diagnosis:

july 2010 melanocytic nevi Lower left calf excised (later in 2014 reread by mskcc as melanoma in situ)
derm exams/6 mos
June 2013 small nodules by excision (we had no idea we should be looking for anything like this and thought it was a vericose vein)
July 2013 bump in groin. Biopsy shows it's melanoma.
Mid August 2013 lymphadenectomy (5/19 positive) and excision of lower leg nodules.
oct 2013 start yervoy and gets all 4 cycles.  Colon issues require heavy prednisone and 2 remicades.
radiation of lymph basin nov/dec
january 2014 tumor profile NRAS pos BRAF neg
march 2013 finally tapering of prednisone
April 2014 pet shows lesion in stomach (3.5 cm) and little nodule in groin and at lower left calf.
may 21 start anti pd1 and KIR trial. 
July 2014 stomach lesion 6cm/liver lesions detected
july 20 surgery to remove stomach lesion
aug 20 start mek162/cdk4 trial liver lesions have shown progression since july
todays scans: liver lesions reduced by 30 percent

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Hi Everyone,


Just checking to see if anyone is going to the NYC Wings of Hope Gala Next Thurs..  Would love to get together.. Hope to  see some of you there.. 

Love and Light

Carole K

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