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.

Expand/ Collapse Topic
Replies By
View Topic
Lizz's picture
Replies 5
Last reply 10/19/2016 - 5:19am

HI can anyone recommend a melanoma oncologist specialist. Diagnosed recently, sentinel lymph node biospy and wide local excision on my arm last week.  I am now awaiting my results of the sentinel which will be available in 2-3 weeks.  I live in England.  Thank you. 

Login or register to post replies.

triciaches's picture
Replies 1
Last reply 10/18/2016 - 8:54pm
Replies by: Anonymous

First melanoma occurance (left shoulder) was in 2009, second was in September 2013.  I am currently classified as T2a NO MO.  I've had several lesions removed, but the most recent biopsy results have me confused.... if anyone can break these down for me, I'd appreciate it.  :)

First Results:


Lentiginous junctional nevus with mild cytologic atypia, approximating lateral margin.  (See Narrative)

Narrative:  The biopsy specimen is significant for an asymmetric proliferation of mildly atypical appearing melanocytes along the dermal-epidermal junction.  These melanocytes are arranged in nests and also proliferate as single cells at the tips and sides of the rete ridges with associated papillary dermal fibroplasia.

Second Results:


Junctional letiginous nevus with architectural disorder and focally moderate cytologic atypia present at one transverse margin.  (See Narrative)

Narrative:  There is letiginous downgrowth of the epidermis populated by single melanocytes and some melanocytic nests at the dermal-epidermal junction and in the dermis.  The melanocytes reside mainly at the sides and tips of the rete ridges with sparing of the suprapapillary plates.  Bridging of melanocytic nests is identified.   No confluence of melanocytes at the juction or pagetoid spread is noted.  The melanocytes exhibit focally moderate cytologic atypia with nuclear enlargement, hyperchromtc and agulated nuclei and prominent nucleoli.  Beneath the epidermis is a zone of concentric dermal fibroplasia.  No dermal component is identified.  The lesion is present at one transverse margin, and recurrence is possible.  


Tricia Chappell - Chesapeake, VA

Login or register to post replies.

SOLE's picture
Replies 8
Last reply 10/18/2016 - 5:20pm
Replies by: SOLE, Anonymous, Joycem, debwray, jennunicorn

Hello all

Here is a brief summary of my situation

T3bN1aM0 (as of august for pet and CT and sept. for WLE and SLN)

Primary on plantar of the foot: Breslow 2.85 (at least), Clark 4, Ulcerated (bled for a month before removal), mitoses 4mm2, vertical growth phase, lymphovascular or perineural or microsatellitosis absent, TILs present non brisk.

WLE: ALL margins clear despite a small 5mm portion missing of tissue because of toes that were saved. Breslow 1.47, no ulceration, mitoses 0mm2, lymphovascular or perineral absent. Microsatellitosis: no clear evidence, TILs absent.

One sentinel node out of three; found ´rare isolated cells' only. Onco surgeon said no CLND necessary.

Here is my plan and I would like to have feedback from you.

I will be given up a new scan schedule and all but even if my first scans come up clear (which I think they will given my short history) here is what I would like to try as adjuvant therapy.

I should say that I think Ihave more chances than others the mel cells have traveled through my blood stream and not so much my lymph nodes.

I am 48 male and in good health, lost all my extra weight this summer through dieting (20lbs) plus another 15 lbs since then out of anxiety. Apetite is there when moral is good and now I am taking more and more ownership of what's happened. I have no intention of letting this disease win over me. Have a beautiful soon to be 14 years old daughter and a very special girlfriend by my side. Work seems to resume for me (am self employed), phone rings and I have Life saying to me: are you going to continue living or what? Hell yes!

Here is my plan. Interferon: no. Ipi alone: no I dont see much advantages of doing this alone since only 20% respond to that drug. So I am looking at the combo ipi+nivo. I know its not standard of care and that it has its share of side effects but listen, if I progressed to Stage 4, I would be offered that combo so why not be pro-active instead? If I'm not mistaken, there is about a 50% response rate which is the highest rate out there.

That is my thinking. I dont have anything to report about lumps or secondary mel or lesions on my skin despite the huge amount of nevi I have. About inside my body I guess my first scan will show what the situation is. I think it will be negative.

In other words, I plan to remain stage 3 for the rest of my life or until they find a cure in about ten years from now.

Toughts on my plan? Sode effects to expect and for how long? Maintenance doses or not?

Login or register to post replies.

Surf Rower's picture
Replies 4
Last reply 10/18/2016 - 4:50pm

I am Stage 1A and preparing for a larger re-excision on my upper arm (with general anesthesia) since the first one didn't get it all. I am seeing a surgical oncologist now for the second one. He mentioned he was going to have the slide reviewed from the first excision, because it might not really be necessary. Preparing to call him back to check on this, I want to know what to ask.  The path report said Melan-A and CD68 were used but in some light googling I found (old) articles saying those were not the best markers, as they also show up in benign nevi. (My dermatologist was "surprised" that his biopsy came back melanoma, as the lesion was a pink/red small bump.) What do you think, and what should I be asking the oncologist, later today when he might call back.  Thank you!

Login or register to post replies.

Anonymous's picture
Replies 3
Last reply 10/18/2016 - 1:29pm
Replies by: casneek, Anonymous

we DO understand all treatment options out there and have been through most of the approved newer ones. Were are curently looking at intratumoral injections of il-2 . So far we can not find anyone curently doing this. They have done this at Huntsman combined with yervoy but not now. I think they are doing it now but not in the US. So if anyone has run across intratumoral injects of il-2 or combined with yervoy or keytruda / opivido let me know. If you get a chance ask around AND THANK YOU IN ADVANCE.

Login or register to post replies.

Dear friends,

We are looking for one patient (advanced stage) and one caregiver in the Dallas, TX area who are interested in participating in a usability study for a pharmaceutical website. These are similar to focus groups, but they are one-on-one. The goal of the research is to make a more user-friendly website for patients and caregivers. Participants will be paid $100 immediately following their sesion. Sessions will take place in the Las Colinas area on November 8-10, but those interested participants who qualify will only need to attend one 75-minute session on one day. 

If you are interested in this opportunity, please send me an email at Thank you for your help!


Shelby - MRF

Login or register to post replies.

snow white's picture
Replies 5
Last reply 10/18/2016 - 10:33am

Hi All-

whewwwww....its been a very eventful last few days.  I am finally at home to rest.  We stay with him 24/7 at the hospital, Mom and I take turns and I had him for 2 days straight, so exhausting since he can't do anything for himself. The hospital is about 40 miles one way from my house.

Anyway, as of this moment he is doing much better.  He is regaining his movement back!!!  Moving that left arm and hand that was almost paralyzed before surgery, still struggling with the left leg and foot.  Obviously he is still very weak, but thats ok.  He is still in the hospital and physical therapy is working with him.  He will probably be transferred by ambulance to a rehab facility tomorrow for 7-10 days depending on how he does.  So that brings up another subject.  We are 11 days out from his Gamma Knife procedure.  We had hoped to start him on NIVO this coming friday, but we are being told that once he is checked in to the rehab that we can't take him out for his infusion???  they say that he has to stay there.  This concerns me as I am very anxious for him to get started ASAP with the NIVO.  I am going to dig deeper into this tomorrow when I go back down there.

So far thats the latest.  Feeling relieved that he is doing better :)


Login or register to post replies.

An ad popped up on my Facebook page today for a company known as Science 37. Naturally, I was very leary about giving them any of my personal contact info, and questioned the validity of their business at all. However, after doing some poking around the internet, this looks legitimate. I'm just curious if anyone has heard anything about this, and if it is something a patient or their caregivers would be comfortable doing? At this point, I am still rolling NED... fingers and toes crossed for brain and body scans in two weeks... so I'm not in a position to need this kind of "at home trial" option. Buuuuut, I can see both positive and potentially negative potential here...........

-- Niki

Login or register to post replies.

SOLE's picture
Replies 4
Last reply 10/17/2016 - 11:16pm
Replies by: Linny, Ed Williams, Anonymous

Back from my oncologist appt. I should say right away that I live in Canada.

All she wanted to talk about was adjuvant treatment in light of what is accepted by Health Canada. Hear that: interferon or watch and wait or c'inical trials but I got to have a CLND. No Ipi available in Canada as adjuvant for stage 3... And the triials offered now are pembro-interferon or placebo-vaccine.

I am completely lost. Even with my light tumor burden, she could not pass by the fact I am a 3B she stood firm that my chances are 50-50. Not supportive is an euphemism. Did not want to expand on anything else...

I wanted to finally get support in this battle and I got the complete opposite.

She seemed young like in her 30s.

Anybody has some solid melanoma specialist name to give me in the Montreal area...

And only 2 scans a year because of all the toxicity involved... so how do you keep a close eye on my situation? France and the US for the first 2 yesrs is 4 scans per year... 

Please someone help.

Login or register to post replies.

Ross's.Mom's picture
Replies 13
Last reply 10/17/2016 - 1:58pm

I posted on here the end of Sept. about my 11 year old son's recent melanoma diagnosis. He underwent the wide excision biopsy and sentinel lymph node biopsy on 10-4. Path reports came back with clear margin at the tumor site (his ear) and no spread to lymph nodes. He had reconstruction surgery with full skin thickness skin graft on 10-13. After the clear path report it was simply a, "Great news, we'll follow up in a month in the clinic. No further treatment." Maybe I am being paranoid, but I am unsettled with that. You are thrown in to this children's cancer world and then just like that they say we are done. PLEASE do not get me wrong, we are so relived with his path results! But, we question if there is any further therapy (immunotherapy??) or tests/scans that should be completed. I guess I am wanting a second opinion from a pediatric melanoma specialist- someone with experience treating ped melanoma- his Dr has only had 3 pediatric melanoma cases in 10 years. I am not second guessing the procedures up until now... I am second guessing the going forward and if there is anything else we could/should be doing. Clinical trials? Research? Does anyone have any insight or similar situation to share? I have put in a consultation request at St. Jude's and am waiting to hear back. 


Login or register to post replies.

Anonymous's picture
Replies 6
Last reply 10/17/2016 - 1:48pm

Dad is still here at the hospital.  The progression is very slow. He still cannot move well, walk, feed himself, get on the toilet etc.  Its so scary.  Mom or I are here with him 24/7. Not sleeping more that about 1 1/2 hours at a time.  He is so miserable.  Last night he told me he wanted to die.  I know he is just frustrated and miserable, but I hate hearing him say that. 

So the game plan is to start him on NIVO (I hope I have all of the names correct, the last few days is a blur).  The thought process is that he is 72 years old, just had brain surgery and is recoving from it.  We need to get somthing going ASAP. The Ono (that Dad likes) met with the Brain tumor board that included a Melanoma specialist yesterday and that is the conclusion that they all came to, his Ono is also in communication with the doc at City of Hope and USC.  They feel that he will tolerate 1 drug better right now instead of starting on a combo of Nivo/ipi? and they feel that we can add anthother drug later if he doesn't respond well.  The Brain surgeon hopes that he will be released this coming Thursday (we shall see) and they are hoping to start with the NIVO on Friday.

Thats the latest.


Login or register to post replies.

Maria C's picture
Replies 9
Last reply 10/17/2016 - 10:10am

Hi everyone,

After a spring-summer major battle with brain mets, my fall MRI shows nothing new and previous tumors all shrinking! The surgery + SRS +  pembro seems to be working, although the pembro is knocking me out physically with sore and weakened muscles and major fatigue. Small price comparatively now that I finally feel I have a shot at controlling this monster disease! Just wish I felt well enough to celebrate with a long hike in this gorgeous weather!

Am on ibuprofen in the hopes of warding off another steroid episode but am nervous we'll inadvertently knock out a gland or two if we wait too long....??? I've gotten used to steroids playing a safety-net role during side effects. 

Main news to share is that the ringing in my ears has nothing to do with active tumors. So, Happy News!!



Maria - Stage IV, MM, brain mets, responder to ipi/nivo combo

Login or register to post replies.

Gert's picture
Replies 3
Last reply 10/17/2016 - 7:24am
Replies by: Anonymous, youngann, Jango

Hi all...originally diagnosed in 2003, stage 1a, WLE, no further treatment. Have a flesh colored mole on my forehead, has been there my entire adult life that is now larger and darker and hurts. I'm scared...calling my derm on Monday. 

Login or register to post replies.

SOLE's picture
Replies 10
Last reply 10/16/2016 - 10:46pm
Replies by: Linny, snow white, SOLE, Anonymous, SABKLYN

My voice is becoming somehow extinct in the last 3 days. This began with, I think, intermittent very mild ear pain 6 weeks ago. I had maybe 6 times that little pain in the left ear. Also for the past 5 nights, when I go to sleep, I experience mild night sweats.

And just now, I've had like an inside flaming of the thorax that went to my throat.

Anyone has had those kinds of things?

Am scheduled to see oncologist for the first time on Monday and am currently staged 3.

Have I progressed to 4 already? My WLE and node results came in 2 weeks ago...


Login or register to post replies.

Sandra_story's picture
Replies 12
Last reply 10/16/2016 - 10:12am

Hello and thank you to this forum for the all the information that I have took in.

This is our story and I apologize for any spelling mistakes and or lack of proper writing technics.

About 8 months ago my mom had got what we all thought was a really bad cold/flu. No one was sure including her doctor. At this time she had what would be considered normal flu/cold symptoms. This issue was that this never seamed to go away. Mostly her upper tract symptoms like abnormal amount of mucous and or saliva that was present. During this time until about a month ago she a seen her gp over 14 times always going through the same thing as the gp insisting that she had some sort of cold or sinus infection and mostly dismissing any concerns my mom had. My mom had to be overly proactive with her gp in stressing that she felt something more was going on. Too make this part of the story a bit shorter, about a month a half ago she noticed her lymph node on the left side of her neck was swollen. A clinc doctor was concerned and ordered a ultrasound. After that a cat scan was preformed and results came back as highly likely that there was some sort of cancer. A biopsy was preformed around a month and a half ago. We waited a week for the results. During this time of wating my beloved grandfather and my moms dad had passed away at the age of 97. A few days after his memorial we a learned the results from the biopsy. Well it came back back as Melanoma in her lymph node on her neck. As we all know and can appreciate that this news came as shock and  to say very hard to deal with. At this point In time my mom had been losing significant amount of body wieght, about 20 lb over the course of the month and had been noticing her desire to eat decress. She had was having a harder time swallowing food and a that with the lack of desire to eat. After the biopsy results we had more wating to meet with the oncologist in our area (Ottawa, Canada) We were lucky to get a Melanoma specialist. Here is a bit of the report after the first meeting. Again I'm sorry if this post is too long.

the following is from the oncologist report:

Thank you kindly for referring this very nice 63-year-old lady regarding her metastatic melanoma. She is well know to yourself and came along with a very caring and supportive family.


She has been generally healthy all her life. She is fair active, but had no other risk factors for melanoma in terms of exposure or family history. She first developed a lesion over her upper back in 2003; that was excised and she underwent negative sentinel node sampling with no adjuvant treatment felt required.

she has been under regular dermatological surveillance all along. There has been no suspicious or recurrent lesions.

However, she noted a lump in her left side neck at the jugulodigastric area a couple of months ago. It has been increasing rapidly in size, even since her recent CT scan. She had a consult booked with ENT service shortly. 

However, her health has been health has been decling with about 27lb of wieght loss in the last couple months. This seams to be due to increasing digestive complaints, having marked dysphasia for solids and thicker fluids. 

(I will now just summarize in my own words as to keep this short , although I know this is too long of a post)

They are clearly concerned for my mom health. The oncologist sent out to review for BRAF MUTATIONS as of today no results are in.

we had a gi tract endoscopy which revealed no tumors in the tract but a a closing of her tract and upper air way due to a lesion or tumor behind her tract.

She is on Iv hydration and also had a feeding peg put in. Wieght seamed to stabilized after this. 

Ct and bone scan have been done along with MRI.

we met with our oncogist today for the second time today. The tumor on her neck has been growing and she has been having more difficulty with shortness of breath and saliva build up due to her blockage of her gi tract.

we were giving these options today and this is were I need the advice form the fourm.

option 1: Pembrolizumab alone ( can start in 4 days )

option 2: If BRAF mutation: dabrafenib + Trametinb (pills) We still don't know the results of the BRAF TEST

Study: Pembrolizumab + Tvec viruses injections [ this a randomized trail being conducted and would take at least two weeks to start with no gaurentee of getting the Tvec or placebo)

option 3: Nivolumab + ipilmumab. [ more toxic and need to be in good health ]  Doctor was on the fence for this option considering my moms current state.


So my question to all the wonderful people on this fourm. Are we headed down the right path. Are there things that we haven't considered that can be important. Treatments that aren't available in Canada but else were that can help? 

I want the best for my mom and love her more then anything. I wish I could portray this better in writing. i have also reached out the an alternative cancer clinic in Ottawa that works with naturopathic doctors and traditional we will see them on Wednesday.

Any advice will be so much appreciated and also I would like to put out there too all the forums family's and friends that have affected by this my best wishes and positive thoughts.  I hopefully Want to be in a position to offer advice instead of just taking.

thank you so much for taking the time to go through this post. You are all so much appreciated in taking time to help other and for that I will be ever grateful.



Login or register to post replies.