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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arthurjedi007's picture
Replies 12
Last reply 8/14/2015 - 12:50pm

I was wondering if this is normal. I made the trip last May to do the first face to face to see the doc. No openings for anything yet. Ok. I have the little card and the next day sent an email thanking him and he responded within an hour. Ok so that is a legit way to contact this doc. The phone numbers on the card are just for the office.

So I've sent 2 such messages so far asking about available treatment and no answer so far. I called and got to talk to one of his clinical trial nurses. She said I would have to come in again and then they would see if they had anything. Is that normal? In my head I'm like what the heck. I've already done the first face to face they say we have to do so later we can check back with them directly because we are now their patient. Am I just being naive and this is normal? When she said that I'm thinking in my head to heck with you folks it would be better worth my effort to go to a different maybe bigger place I haven't been before.

I dunno. Getting in this trial stuff is hard enough without this crud. Is this type of response normal?

Sorry I'm just already frustrated and annoyed on top of the normal disease and med making me hurt and feel crummy.

Artie

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Tim--MRF's picture
Replies 5
Last reply 8/14/2015 - 10:53am
Replies by: Tim--MRF, Ed Williams, Anonymous, Bubbles

We have been following discussions with the FDA around approving Opdivo (nivolumab) as a first-line therapy for metastatic melanoma. Currently the label require patients whose tumors have the BRAF mutation to have BRAF therapy first, then Yervoy (ipilimumab), and only take "nivo" after those approaches have stopped working or proven intolerable. Patients without the BRAF mutation must progress on ipi before taking nivo. 

The company who makes nivo, BMS, has applied to expand the approval so the drug can be given as the first treatment, instead of the second or third. The FDA said it would make a decision by September 30. They have now announced that the deadline for that decision has been pushed back by two months. What does this mean and how will it affect patients?

First, the reason for the delay is that BMS has recently submitted a large amount of new data focusing on patients with the BRAF mutation. The FDA simply needs time to review this data.

Second, based in the initial data the FDA could have approved nivo as first line therapy only for patients whose tumors do not have the BRAF mutation. With this additional data they are more likely to take action for all patients regardless of BRAF status.

Third, the oncology drug section of the FDA has done a good job recently of acting before their deadline, and sometimes well before the deadline, so we can hope this will be the case in this situation.

Fourth (and last!), many oncologist are prescribing either Opdivo or Keytruda (which has the same restrictions) as first line therapy despite what the label says. This is in keeping with other guidelines and has not generally faced any pushback from insurance companies around coverage.

The bottom line is that the delay is not a cause for alarm and may result in more patients having access to anti-PD1 therapy faster.

 

Tim--MRF

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Millykamp's picture
Replies 10
Last reply 8/14/2015 - 3:45am

About 2 weeks ago I had an shaved biopsy on a mole done on my neck. The derm had called and said we need you back in to redo the same spot. Due to what it had said  in the report its non cancerous but it's giving us some reading...  I go in tomorrow for re shaved. But this time more wider and deeper tissue is being biopsy on again...  

 

I am am confuse by the whole thing. Can someone explain it to me?   

Melissa 

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/14/2015 - 12:23am
Replies by: KMick, kylez

If you were amelanotic, what would you be looking for; skin wise for recurrence

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Jubes's picture
Replies 11
Last reply 8/13/2015 - 11:06pm

Hi all

my doctor and I have decided to have a go at stopping keytruda and see what happens. I will try and do 2 more infusions despite debilitating arthralgia/myalgia for which I have been on prednisone since April and trying to wean myself down. Just now on 7.5 mg per day but can't function on less. 

I will have done one year of keytruda when I stop. Has anyone stopped keytruda and had disease progression afterwards. My lung tumour has decreased from 7.9 cm to 3 cm or less with no new mets in this year of treatment and the melanoma in my nodes has disappeared. I am assuming it will take 12 weeks or so for keytruda to wash out of my system. But just wondering when ppl stop it how long has it taken for side effects to go away?

thanks for any info

anne-Louise 

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heiditemple's picture
Replies 4
Last reply 8/13/2015 - 8:03pm
Replies by: lmhl, DZnDef, DianaD, CHRISNYC

A few weeks ago, I had surgery to remove a lump on my neck that showed up basically right in the middle of where my radical neck dissection had taken place in December 2013. I was originally staged 3C. I went through a clinical trial where I received Yervoy, but I was kicked out of the trial after 6 doses because I developed severe endocrine issues. I got my pathology report back today, and the lump came back malignant. The problem is that they aren't sure what kind of cancer it is.. either it's a desmoplastic melanoma (my original melanoma was NOT desmoplastic), a melanoma recurrence, or a sarcoma. For now, they're calling it a malignant spindle cell tumor because the pathologists aren't sure. Apparently I'm a weird case. I'm headed back to Vanderbilt next week, but I was wondering if maybe anyone had any experience or insight into any of this.

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arthurjedi007's picture
Replies 16
Last reply 8/13/2015 - 4:52pm
Last Thursday I was at NIH in Bethesda for TIL screening. Before going we already did a blood kit and biopsy testing. I had no antigens they wanted so the other trials were a no go.
 
Also had to be at least 14 days off nivo PD1 so last Thursday was 16 days so 2 days overdue for nivolumab.
 
Not sure how much folks might be interested in so I'll try to include a lot of my experience. 
 
Basically pretty much everyone was nice.
 
If driving you want to go to the patient entrance. Security checks the car in my case a rental and you go inside where they check your stuff then give you a day pass badge.
 
Just a short little turn from there to the main entrance where dad dropped mom and I off. He parked in P1. Not sure much about that.
 
Lots of walking required but you can avoid all the steps. If you have to be in a wheel chair that disqualifies you immediately for TIL. My cane did not disqualify me. I ended up walking all over that place that day. Not easy but suprisingly I did it.
 
First stop after the men's room was admissions. They should have sent you a map of the interior of the building ahead of time. If not it's on their website. Basically they have you sign in and give you something to read then they call your number. Then another lady brings you back to make sure all your demographic stuff is right and things.
 
Next was supposed to be Clinical. That's on the 3rd floor. But it was 7:30 when I was supposed to get my blood work and they said no one would be in until 8 so back to the first floor we went.
 
Blood work was the now typical sign in and wait for your number to be called. I guess I was nervous trying to get everything done on time and one of the patients who had been going there for years said NIH stands for Not In A Hurry. So I felt better. Then they call your number and lead you back to in my case the guys cube. As he was checking all the tests and putting labels on the tubes he noticed a urine test. So did that and back. By then he had all 12 tubes ready. Sheesh. I was used to 2 or 3. 12 was like when I was first diagnosed over 2 years ago. So yes you got to be in decent health for this. Went fine and the small bump is almost gone after 4 days.
 
Now back up to Clinical. This is where the lady I've talked to works and the nurses and doctors that are part of the TIL. They did the usual weight, height, bp, oxygen, pulse, temp thing. Met the head nurse that has 4 that do the clinical. Met one of those. Signed the trial papers. Not the papers for TIL but the papers for evaluation of being accepted into TIL is a trial apparently. If everything was done could also have new patient orientation at 10:30 or afternoon if wanted or talk to a social worker for financial aid and anything else that concerned me.
 
Next back to first floor for head MRI. Got to the place that the sign above the lady's head says CT/MRI Reception. Said I was there for my 8:30 head MRI. She looked at her papers and said she didn't have me until 9:30. I said they said 8:30. She said well they sometimes do that because of the contrast. She said I had no contrast for the MRI but I do for the CT. Here's papers to fill out and have a seat. So I turn the papers in and wait thinking she knows what she's doing. At 9:15 another lady gives me contrast to drink. Parents go to cafeteria. At 9:30 they bring me back to change into scrubs. Not easy to change my shoes on a bench by myself but I somehow did it. Then another lady that does the IV. She said I was here for my CT and I was like yes but I was also here for an 8:30 head MRI. She took me to the real MRI reception. From the other one that was through a door, down a hall, around a corner and through another door. They said I had no MRI scheduled. So back for the IV and did the CT with more contrast in my IV. Went back to the CT/MRI reception lady and questioned about the 8:30 MRI. She said that was at 8:30. I said I know I talked to you at 8:30. So back to the real MRI reception and they said they would call me if they get an opening.
 
My parents are still in the cafeteria so I'm in scrubs with no phone, bill fold or anything except a bag with my street cloths.
 
So off I go to the EKG area. That was a quick take me into a room and lay down and wait. Finally some rest. They gave me the EKG paper saying to take it back to radiology.
 
So back to radiology but I didn't want to talk to the CT/MRI lady so I asked the chest x-ray lady that the EKG person said to bring this paper to them. Her eyes get big and says no no. If you want a chest x-ray she can do that. So that was on the list too so a simple stand in front of machine. Then turn and hold on to a couple straps and both xrays done.
 
Finally everything done except head MRI. Parents not back and it is about 11am. So up to 2nd floor cafeteria and no parents so back to radiology and they just got there so back up again to cafeteria. It is ran by Eurest. Same that used to be where I used to work. Same food and tastes the same. Not that great in my opinion but I was hungry and exhausted.
 
Back to Clinical at 12:30. Wait until sometime after 1 and they take me back to an examination room. Gave the head nurse I met in the morning the paper she had given me to fill out plus the EKG paper report. Also mentioned the head MRI issue so she got on it right away. Said it was scheduled for the next morning which wouldn't work too good since we fly out the next day. So she got it set for 4 pm.
 
The next folks that came in the examination room are to check my veins. Because if I'm accepted the next visit is surgery. But 2 days before surgery these ladies hook you up to a machine for 4 hours. The needles they use are way bigger than the normal cancer needles I'm used to. This machine filters your blood so they can have something to put the surgery tcells in to help them grow. They check your veins with a blood pressure cuff and visually looking at them.
 
Next came in the lady I've been talking to on the phone pretty much every week since early May. First talked to her last November.
 
Next folks that came in was a doctor. He spent most of his morning looking through all my records. He went over my treatment history. Had me explain the cane which is more of a crutch because I don't want to fall. But like I said last winter I had to have it. He checked me out a little physically and I think asked some more questions and answered ours. He was confident I was physically ok for the treatment.
 
Next that doc and a senior doc came in. She was focused on which tumor to remove to get the best cells. Like she said they do not do major surgery because the patient cannot recover enough to do the treatment. So reading between the lines in my opinion this is something they've learned from the poor folks who didn't make it through the treatment. For my best cells would be the tumors in the fat of my kidneys but that would be major surgery so a no. Also major treatment would be the one in my skull pressing on my brain so no. They would not consider the one deep in my leg because they do not want to risk jeopordizing my already problematic walking. Now the huge one in my shoulder might have been minor surgery which is the only type of surgery they will do. But since was mostly necrotic it would not give the cells they want. Last is the super clavical tumor would be minor surgery. She felt it and it wasn't as loose as she would like but they could do it. It is also big enough because it has to be at least 2 centimeters. But it is smaller than it used to be. In my opinion it is smaller because of last winter's radiation and maybe the pd1. But since it is smaller they believe it is responding to treatment thus a no. Like she said they could get tcells but if they are going to put me through such a treatment they want to make sure they get the best cells. So again reading between the lines I think that is one reason I picked up why they have better response they only go for the best cells. Probably also something they've learned from the folks that have gone before. So no tumors to harvest so she said they would make the final decision monday when they all get together but at that point she believed it would be a no. They said the first doc would call me around 1pm monday after their meeting.
 
So back to the 1st floor real MRI reception. Signed in and they verified I already had an IV and scrubs. Waited and took 2 tylenol and went in. Typical remove glasses and leave cane. The typical small tube but at least they blow cool air in this one. Most of them get so hot I burn up so that was nice. Did the first part of the scan fine. They put the contrast in and the guy no sooner got to sit back down when I say I'm choking. I had felt a metalic taste in the back of my throat which I vaguely remember from a couple years ago they said is normal. So I swallow and all of the sudden fluid is in my throat that is too much to swallow and I'm choking. He says he's coming right in. As he's coming in he asks how I'm doing. By then I have so much fluid in my throat I can't talk so I just squeeze the ball. He says he's hurrying. Then the fluid starts filling my nasal passages so I can't breathe at all. Seems like a long time but total it was probably only 10 seconds from me saying I was choking. That guy was fast. Probably another miracle the scheduling got messed up so he was there to be fast for me. He then had me out and my back propped up going to put me on a strecther. Once I was propped up I guess it was gravity because all the fluid just rushed down. I kept my mouth closed otherwise I probably would have made a mess. So at least now I can breathe I'm just coughing and gagging as they wheel me into the corridor. Suddenly a gazillion medical people are around. They check me out and see my face and upper chest are flushed so they give me benedryl. They page the first doc that I had saw a little while ago. They are trying to decide what to do. Whether to keep me in the hospital over night or what. But since I seemed ok they started talking about finishing the scan. The tech said there was 12 minutes left but it turned out to be 18. Since my parents saw all those medical folks running they thought it was for me although there was at least a half dozen or so other people back there. They were very worried so some medical people talked to them and when I was ok they had them come see me so they knew I was ok and went back. They checked me out some more and cleared me as being ok and to never have magnavist mri contrast again. So the tech brought me to the men's room and I could see my face was still a little red. Then I got back into the tube and finished the scan. 
 
They wheeled me in a wheel chair to the main entrance. Then we waited for dad to get the car and left. What a fun day. lol
 
So today. Monday at 4pm their time I called the first doc and he confirmed it was a no. But if that one in my super clavical ever grows they want to know about it.
 
So I got a message out to my Chicago doc waiting to hear if he has an opening in any of his good trials.
 
Also called my Saint Louis doc where I'm at and already got setup to get back on my PD1 tomorrow afternoon. So only 1 week late.
 
Thinking about that trial Celeste mentioned about Keytruda plus some inhibitor pills. Also thinking about that trial Catherine posted about Keytruda plus daily IL10 injections. Also thinking about going to MSK or MDA. Especially since the t10 ablation and cement it seems I can fly some granted there was almost no turbulence and very soft landings. Certainly going to have to pray for what to do next.
 
So that's it. Maybe some tidbit in there will help somebody sometime. I dunno.
 
Artie
 

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Banders's picture
Replies 2
Last reply 8/13/2015 - 1:13pm
Replies by: dfeng, Mat

My fellow stage 4 Braf Positve on Mek/Taf:

So I've been on the combo sine March with incredible results and little to no side effects.   Even feeling good enough to do some yard work.   About a month ago I got into some poison ivy while pulling some weeds in a part of my yard where I've gotten poison ivy rash before.

 

No big deal and it went away.  About a week ago pulled more weeds in that area (yea, I'm not very smart) and once again bumps and a rash.  However, it didn't look the same as previous poison ivy episodes and today my oncologist looked--doesn't think it's poison ivy.

It's a red rash that is oozing and it's primarily on both wrists--both of which are swollen.

 

Sorry for the length, but does anyone have any experience or thoughts?

Onc. thinks it might be a side effect caused by sun exposure.  It's right where my long sleeves that I always wear end.

Thanks ahead for anything.  Can't see dermatologist until next Monday.

 

Brett Anderson

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anitarivera's picture
Replies 5
Last reply 8/13/2015 - 12:01pm

I thought I recently posted, but can't find my original post. I'm new here, diagnosed last October with stage 1b melanoma, had a WLE and no further treatment. I consider myself extremely lucky.

my husband and I want to have another baby but no doctor will give us a straight answer about the possibility of the pregnancy causing melanoma to rear its ugly head again somewhere on my body. We are scared/confused and would appreciate anyone's experience or knowledge with regards to this topic.

thank you!

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evieg's picture
Replies 6
Last reply 8/12/2015 - 3:07pm
Replies by: arthurjedi007, SarahA, dkeagle, Anonymous

We found out that my husband has 24 small brain tumors. He will be doing three weeks of Whole Brain Radiation .  When we met with the Dr. she said that when he is done with the WBR he will then have Biochemotherapy.  She said he does that or his other option is Hospice.  Needless to say we are devastated. Of course, my husband will continue his fight against this beast, but I know the odds are not in his favor. We were told that there is a 60% response rate and out of the 60%... 7-10% go into remission or NED .... The other 50% will get an extension of survival for how long? Of course, no one knows.   Just so so scary.

Would greatly appreciate any input or experiences you have had  good or bad... 

Thank you and God Bless each of you.

Evie

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Hayden30's picture
Replies 13
Last reply 8/12/2015 - 1:15pm

Hello, 

I've recently started the Taf/ Mek combo which has immediately started shrinking my subcutaneous tumors. I realize that these drugs will most likely eventually stop working. I would love to be able to start nivolumub now while the Mek/Taf are working fast to reduce tumor burden, and the nivo will hopefully work for longevity. My doctor says that it is not possible to do these at the same time because they are not fda approved to be used this way yet, so insurance won't pay for it. Has anyone heard of someone doing the BRAF drugs while doing nivo or keytruda? And how did they gain access to this? Any info would help! Thank you!

 

Hayden

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DianaD's picture
Replies 4
Last reply 8/12/2015 - 12:59pm
Replies by: DianaD, ldub, stars

I had the mole on my back removed yesterday at the University of Chicago, and it is being biopsied.  The doctor thinks it's one mole, rather than two, because she could see scar tissue, from the excision ten years' ago, separating the two "halves."  The mole measured 7mm long, by 3.5 mm wide.  The doctor performed a shave biopsy, because it was the only way she could get the mole in one piece, and she wanted to preserve it in one piece for pathology.  She said that sometimes moles grow back, where they have previously been removed, and they look like melanoma, but they aren't.  The only way to tell is microscopically.  Finally, she said that I would receive a call regarding the pathalogy report within 2 days to two weeks.  My impression is that the longer it takes, the more likely that it's melanoma, because they perform additional tests. 

DianaD

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Lyric17's picture
Replies 32
Last reply 8/12/2015 - 11:44am

Hi everyone,  my name is Lyric and yes that is my real first name. I am 30 years old and I seem pretty healthy except for an issue I have going on with my index finger nail.

 

About a year ago I noticed a small skinny pale light brown streak on my nail. The line is near the side of the nail and not the middle of my name. It runs from the cuticle to the end of the nail. And to be honest I use to smoke and had quit about a month before I noticed this discoloration of a line on my nail. So when I spotted this I thought it was nothing more than cigarette tar stain to my nail and it would slowly go away since I was smoke free.

 

Six months went by and nothing changed. The small skinny light pale brown streak was in the same spot with no changes. My fiance kept telling me I was worrying over nothing and just to forget it and as you age your body changes. At the moment I went along with what she said but at times in the back of my head I didn't feel right about ignoring it. Kind of like it was my body telling me something or a possible warning. 

 

Finally at about a year I got tired of looking at it and after several hours of non stop looking online the only thing I seen remotely was something called Subungual Melanoma. My fiance did her own research and it's all she could come up with as well. She grew a little worried by now and so did I.

 

Next day I called my local clinic and doctor to get an appointment. I was able to see the doctor about an hour later. So the doctor looked at my index finger nail and was speechless. She said she had no idea in all her years of practice had she seen something like this. I mentioned to her what I found online and she left the room to do some searching. She came back and stated she had no idea and she called making a referral and appointment with a Dermatologist Clinic and Cancer Specialist next town over.

 

I had to wait about a month before I went to see the dermatologist. Once the dermatologist looked at my fingernail she asked if I'd like to have a biopsy done that day or later and of course I chose now. So the dermotologist comes back and ssys she is doing a punch biopsy of my nail and the skin area below the nail which is where melanoma/whatever it is is. She does the punch biopsy and not to much discomfort. 

 

Now I had to wait a couple weeks for the results of my biopsy. If I got a letter in the mail it was benign and if the called me it's malignant. Well today my results came by a phone call. But the RN says the results showed nothing but something is there and we need to figure out the cause of it. She said that this time I will be seeing the head main dermatologist next visit who will performing a deeper biopsy sample of the area. The RN stated they knew it was some type of melanonychia but don't know exactly why or what. So they don't know if it's benign or malignant or nothing. So now I have to do a second biopsy of the same spot and a little deeper. And now i gotta wait another month till my next biopsy. This concerns me a lot and has me extremely worried. My fiance keeps saying things will be alright but that people die young everyday - which this is not very helpful.

 

Can anyone give their thoughts and opinions here? I'd really appreciate it a lot. If you know anything about, anyone who has been through or if you have been through this please let me know more information. I feel lost and kind of like it's a type of cancer that many doctors don't know about. Help please!!!

 

BTW I have recently became a member also of Cancer Compass asking for help and thoughts. The people there have been really nice and I have had a couple replies but I would like to see thoughts and help also from those from melanoma.org site here. Please if you've have had experience, know someone who has or any information please let me know. I have included a couple pics as well of my index finger with the supposed issue. In the photo you will see the light pale brown line near the edge of my nail and you will also see where a recent punch biopsy was performed. As stated above that biopsy came back inconclusive and I have to now go in for a second biopsy which will be deeper. 

I'm a 30 year old white male btw just to give a little idea of my age and race.

I'm very terrified and scared. I have cried almost every day over  and can't imagine dying and leaving my two dogs and two cats. I can't imagine leaving my fiance as well who will not discuss or talk about it all. I have no family to talk to as I was adopted and have not talked with my adopted parents in over 10 years. I don't know my real parents and family so medical history and support is not there. I have no one to really turn to and I'm sorry for asking for help and support. But then again this could all come back benign but from what I've read one benign cases are more common in african american but with caucasian it's very rare and more possibly malignant. Plus the life expectancy is horrible. Help me with information or anything if you can.

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strideam's picture
Replies 5
Last reply 8/12/2015 - 4:47am
Replies by: stars, strideam, tsykes1

Hi, so thankful to find this group. I'm 39 and on July 27th was diagnosed with melanoma in situ, had a WLE the next day. I don't have the pathology back for that yet. Pure chance that I asked my regular derm to look at the funny mole on my calf--she biopsied it immediately. I have no family history of melanoma, no tanning beds ever, but a few sunburns I can remember and I've lived in SoCal for 15 years. Still, I was absolutely shocked at the diagnoses.

I went to a derm specializing in skin cancer and had two other 2mm moles removed and am awaiting those results as well. She referred me to an oncologist here who is a melanoma specialist just to get any questions answered, etc. and I see him Wednesday.

In the meantime, I'm freaking out. I have a three year old. We were going to try for another baby and now I'm scared to do that.  I'm rereading my biopsy obsessively, as the dr. who did my WLE barely discussed it with me. I'm posting it below if anyone has any feedback...it SEEMS good, but my biggest fear is it'll be more advanced after the WLE pathology.  WHY DOES IT TAKE SO LONG?! Ugh.

Melanoma In Situ

R/O DN VS MIS 4mm

There is an asymmetric proliferation of atypical melanocytes arranged as irregular nests and single cells along the dermalepidernmal junction as well as above it. In some areas there is more uniform arrangement of junctional nests and intradermal melanocytes in the form of a preexisting dysplastic nevus. Heavily pigmented melanophages are present in the dermis. The atypical junctional melaoncytes extend to the lateral margins. A severely dysplastic nevus was considered, but given the extensive pagetoid spread, a melanoma in situ arising in a compound dysplastic nevus is favored.

Amy

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stars's picture
Replies 2
Last reply 8/12/2015 - 4:44am
Replies by: stars, dfeng

Hi - just a shout out to DFeng - how are things going? Any news to report? I understand that you are undergoing treatment for recurrence, hope things are all on track.

Stars

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