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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Anonymous's picture
Replies 2
Last reply 10/5/2016 - 12:59pm
Replies by: Polymath, Bubbles
Rita and Charles's picture
Replies 4
Last reply 10/6/2016 - 7:51am
Replies by: Bubbles, Fen, Patrisa, Casitas1

So we have had our summer bubble, travel, family, lazy.................4 months off meds, first scan since July.  July PET showed lung tumor and lymph nodes almost no activity - Yay!  BRAF combo - whatever side effects Charles suffered were worth it - it kicked Mel in the butt. The side effects at the end became too much, we chose to live a summer of life, take another trip in November.  And yet now here we are - breathing the "scan day" air which always seems thinner, nerves more rattled...........wish us luck.  Results on Thursday with Onc.............we pray PET has no lights to show!



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SOLE's picture
Replies 6
Last reply 10/4/2016 - 4:47pm

Hi everyone,

Found out today that my WLE and SNB results are finally available from the hospital archives.

As some of you know, I had my surgery on Sept. 9th and my official appointment with my onco surgeon is Oct 13th...........

My question to you: should I wait until my scheduled appointment or should I go get the results myself asap?

Did you find any comfort having a doctor tell you your outcome? Was it reassuring? Etc...

Really looking forward to your input all of you

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Happy_girl's picture
Replies 5
Last reply 10/4/2016 - 4:49pm

I posted a few days ago about being nervous about my scan.  Well - I just had my scan and my doc gave me my results- she didn't have the official results, but she still looked at and compared both scans.  The sub cm spot was still there- it didn't change in size and no other spots showed up.  She felt comfortable and confident saying the spot is not melanoma.  My next scan - baring any unseen issues - praying that forever stays!

thank you all for listening and your support! 

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Anonymous's picture
Replies 5
Last reply 10/3/2016 - 2:25pm
Replies by: Polymath, debwray, Anonymous, btcedarr

I'm having a hard time understanding what insurance is obligated to pay for if a treatment fails. What's the best resource for understanding insurance obligations for covering treatment? For instance, if I were to start on Keytruda, would I be able to take an inhibitor, ipi/nivo, ipi or something else if that doesn't work? Does that change if I were to take ipi first, etc?

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Anonymous's picture
Replies 20
Last reply 10/3/2016 - 10:30am

Found out I had malignant melanoma and not pyogenic granuloma under my right foot right in between 4th and 5th toe. It had been growing for probably 6-9 months and given the nature of the thing, of course it was ulcerated (most pyogenic granuloma are). So my location is under the foot right at the cushion of flesh supporting 4th and 5th toe which supposedly is thicker (3-4mm) than the forehead flesh (1-2mm). Needless to say it is amelanotic. Type is acral nodular.

My initial pathology report said the following

Peripheral margins: involved in invasive melanoma

Peripheral margins: involved in melanoma in situ

Deep margins: involved in invasive melanoma

Breslow: 2.85mm at least (to base of submitted specimen)

Clark: level 4 at least (to base of submitted specimen)

Ulceration: present, extensive

Mitotic index: 4MF/mm2

Microsatellosis: not identified

Lymphovascular invasion: not identified

Perineural onvasion: not identified

TIL: present, non brisk

Tumor regression: not identified

Growth phase: vertical

Stage: Pt3b

I have underwent the WLE (not accepting amputation of my toes and skin graft is healthy and slowly healing: I think they got approx 2cm almost all around but maybe 4-5mm short beneath the toes particularly the 5th one) and SNB. Surgeon found two uneventful nodes and all was sent to pathology on Sept 9th. Believe it or not, I will likely get my results next Oct 13th... 5 weeks of excrutiating wait. Needless to say, my life has stopped and I have multiple anxiety problems. Girlfriend is as supportive as can be but I've been driving her crazy since the day I received my report on July 13th.

Now, what are, realistically my chances of having a negative lymph node result? I read 20% everywhere but I have looked at stuff on youtube given at the 2015 AimatMelanoma conference (or something like that) that basically said 10 times your Breslow deapth is your chance of finding microcells in your lymph nodes.

Can I have your guidance and wisdom please?

I am in total disbelief... Comments on my report and chances of being stage IIB and not III...








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Anonymous's picture
Replies 5
Last reply 10/9/2016 - 9:22am
Replies by: Anonymous


My husbands pathology report states the below in the comment section, could someone please help me work out what this means. 

'A difficult meloncytic lesion. There is at least melanoma in situ and in one early level a solitary atypical dermal meloncyte. This is deemed early largely regressed melanoma' 

it is the early large regression which has me confused. 

His report states 0.4mm, no ulceration, mitotic figure 0 per mm2, superficial spreading, radial growth phase, brisk TIL. I know all of these are signs of good prognosis however I can't help but think they aren't true as it had largely regressed therefore could have been deeper/VGP etc

Any advice would be appreciated :-) 

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BrianP's picture
Replies 7
Last reply 10/11/2016 - 5:28pm

Warning:  Long winded post may cause narcolepsy.  Recommend placing pillow near keyboard.

I really enjoyed Julie’s “Update & Plan A & B” post and found it quite helpful.  I was pleased to find our methods were very similar.  Here’s my update and lesson’s learned over the last couple months.  A quick summary for those unfamiliar, I completed a 2 year sequential ipi/nivo combo trial in Aug 15.  At the completion of the trial I had two tumors that had been stable for the last 18 months of the trial and for one year post treatment.  A Petscan on 3 August showed a couple new suspicious nodes with mild uptake.  Due to location of the tumors and some other factors I made the decision not to biopsy and rescan in 8 weeks.  I did that scan last Wednesday which showed increased uptake on those nodes and confirmed my recurrence. 

Waiting the 8 weeks for the second scan was tough mentally but it did allow me some time to see several experts in the field.  Like Julie I did as much research into the science and did a lot of searching on  Here’s a little trick on I found very helpful.  Go to Advanced Search and type in “melanoma” in Search Terms.  Under Recruitment select “Open Studies”.  Select Adult under Eligibility Criteria.  For location select United States (or as appropriate) or you could select between 1 and 3 states near your location.  Under Additional Criteria you could select the Phase trial you are interested in or leave it blank.  Click search and depending on your location criteria you will get 2 or 3+ hundred results.  What I discovered is the “Search Details” tab near the top.  If you open that tab you can then usefully filter your search.  For instance if you are looking for an anti-PD1 trial click the “PD-1” term and it will filter down to only the trials with anti-PD1.  If you are a Stage IVer you can click the “Stage IV melanoma” term and find the trials for stage IV patients.  Maybe I’m the only one that didn’t know that but I’ve been using for a long time and never knew that.

Another lesson I keep relearning is how to prepare for meeting with the melanoma experts.  When I go there with specific questions and objectives for the consult I always come away with more useful information.  If I go there “hoping” they are going to tell me what I need to know I am usually disappointed.  Sometimes after a consult I realize that I’ve received lots of information but the doctor never really said what I should do.  I have to remember the question, “What would you do if you were in my shoes?” question.

So in my specific case I struggled through a few competing treatment thoughts.  As a previous anti-PD1 responder there’s no guarantee but a good chance I would respond a second time.  Do I want to go back to a PD1 drug and hope to get another 1 or 2+ years out of it and hope for new and improved treatments to come along in the future.  The other competing thought was do I try something outside the box and keep PD1 in the back pocket.  And the third competing thought was a compromise between the two where I look for a PD1 + experimental drug combo trial.  I will say I was impressed with the amount of phase I and II trials with PD1 combo.  I think it was Tim Turnham after ASCO 2016 who said we are 1 or 2 years out from the next “big PD-1 like” announcement.  If the number of Phase I and II trials on is any indication I think he is right.

I struggled with the decision but have decided to go with the outside the box option and try the” Cellular Adoptive Immunotherapy Using Autologous CD8+ Antigen-Specific T Cells and Anti-CTLA4” (Josh’s trial).  There’s a few beliefs I’ve had from the beginning of my melanoma journey.  One of those was that I was going to try as many things as I could while I have the ability.  I’ve read so many stories of patients not having success with their first, second, or even third treatment but eventually something worked before they ran out of time.  That also formed one of my other beliefs in the cumulative effects of treatments.  One treatment may not be your solution but it provides just the right amount of impact on your immune system for the next treatment to finish the job.  I also figured this was a good time to try a trial like this where you have to wait up to 8 weeks to start while I still have slow disease progression and low tumor burden. 

Well that’s it for now.  If you made it this far I salute you!



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Happy_girl's picture
Replies 4
Last reply 10/3/2016 - 10:07am

Well- it's almost time.  I get my scan on Monday.  The history- my last scan in June they saw a sub cm spot on my liver.  It was too small to tell what it was ( this was through a ct scan)  my scan before that was a pet - and they didn't see the spot.

my doc (James cancer center - osu-Columbus Ohio) was very positive saying she is fairly certain it is just a cyst - but to rescan just to check.

so now it's time for the rescan and I'm scared to death.  I'm hoping cysts would be common and this is a cyst! I know this isn't really a question- just needs to share! Feel free to let me know your thoughts! 

Oh yeah- I'll be 2 1/2 years ned stage 3a if this scam comes cack clear!!!

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Jenine's picture
Replies 5
Last reply 10/6/2016 - 7:10am
Replies by: Bubbles, Jenine, debwray

Hello All,

Has anyone participated in case study 13-105?  My husband is considering this as an option for treatment. From what I understand it has been in trail phase for 2 years but feedback is limited.  Thanks.

Wishing everyone strength and good health♥️ 


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Anonymous's picture
Replies 4
Last reply 10/3/2016 - 9:57am
Replies by: cancersnewnormal, Anonymous, debwray

About 2 years ago I noticed a pink/brownish bump on my thigh.  It was a small perfect circle. I suffer from ocd and health anxiety so I was constantly poking and prodding at it.  At one point the top got some flaky skin on it.  It never grew and the flaky skin was the only issue.  After looking at thing for 8 months I asked it be removed and the doctor said it looked fine but he would remove it.  It was 4mm and he did a shave biopsy.  

I was told I needed to return to have it excised and was told it was an atypical traumatized spitz Nevus/ differential diagnosis of benign spitz.  The shave apparently got the entire mole because the excision was completely clear.  

I am 34 years old and started researching spitz Nevus and started getting anxiety that it might have been melanoma that they missed.   Spoke to my derm and he put me in touch with the dermatopathologist.  He is university of penn trained and worked under bernard akerman.  He went to great lengths to explain what he saw in my spitz and he said in his trained eyes it was a traumatized spitz Nevus and when I explained that I had been picking at it the doctor said then tgat explains the changes I saw ! Then tried to explain trauma in a mole.  The dermatipathologist said we removed it with clear margins and that is the standard of care.   He said in an adult a diagnosis of a complete benign spitz Nevus can never be made because they have atypical features.   He said get my yearly check ups and that the likely hood that this tiny lesion ever haunts me is almost non existant. 


For those who understahd this stuff it sounds like the only concern he had was the trauma of the spitz and the rest met the criteria for a benign spitz.  Is it reasonable to relax and put this behind me  and why is the trauma significant ? 

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Replies by: Anonymous, Bubbles

Samantha posted some replies to my earlier post even though she was dealing with the passing of Mickey. I am grateful for her contributions (as I am everyone's) on this forum.

From 9-29-16

"Sadly today I will lay my sweetie to rest.  He had passed away at MDAnderson on 9-24. His LMD was under control and he had started the TIL trail for progression in his liver,lungs and lymph nodes.  They did a CT of the chest and abdomen on Sunday  and all was stable. The third day in his blood oxygen were low and blood pressure was low, they did a chest X-ray that showed possible aspiration gave him lasiks then they took him to the ICU where he passed away. They asked if I wanted an autopsy I said no more cuts.

Mickey's LMD was in his spine and they did do radiation there so that maybe way he had to have the flow test both times.  He did the intrathecal with the IL2  but had to stop to get on this trial.  We were going every eight weeks.  In 2013 Mickey developed hydrocephalus (which is a side effect if intrathecal) that was when they put the shunt in.  he had had WBR and two gamma knifes done and by the end of 2015 his brain was getting tired.  He had the intrathecal done in 12-15 and by the time I got him home he could not make his legs move so we went back down there nothing found he got better we went home then the next one after being home an hour he couldn't talk we went to the ER here at home they said it was a seizure. When we went back for the next one Mickey progression had gotten worse so they wanted to try to get him in this trial.

I keep coming back here for the LMD Warriors, I know he would say he would do this treatment all over again. It was bumpy but I would go on the journey again knowing what I know."

Wishes of strength and support go out to you over the next weeks and months Samantha. Always think of Mickey's arms wrapped around you in his warm embrace. From now on every round of Mickey's includes a hole in one.


Even after the warriors have past they continue to contribute to those left behind. As the anniversary of Artie's death (which hit me especially hard even though I had never met him) I find myself reviewing many of his posts in search of pain relief options for Adriana.

My gratitude to all.



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Anonymous's picture
Replies 3
Last reply 9/30/2016 - 9:14pm

I am a 23 year old white male with numerous freckles and moles. After a friend pointed out a very atypical mole on my calf, I went to a dermatologist for a biopsy. I was diagnosed with a melanoma In-situ, and was okay after my dermatologist explained the excellent prognosis. I have had my WLE with clear margins. I went to pick up a copy of my pathology report for my files, and noticed the diagnosis was an "irritated early evolving melanoma in Situ". I am a bit of a hypochondriac, and it worries me that I haven't seen this exact diagnosis with my google searches. When I went in for my WLE, the doctor assured me that it was in situ. Can anyone more knowledgeable than myself explain what the "irritated" component of the diagnosis means? The pathology reports last line reads "there is perivascular lymphocytic inflammation with melanophages". Thanks in advance for your help!

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Replies by: Hukill, debwray, Anonymous

We live in Miami Florida. This week my father who is diabete and 74 yrs old received the following results from his dermatologist.  Any advice and recommendations the first appointment with the oncologist is this monday. I am going with him and I want to be prepare as much as possibe.

Thank you for any information and help you can provide. 

Skin Biopsy, Mid Upper Forehead -
Malignant Melanoma, Clark's level at least IV
Breslow thickness at least 2.8 mm
Ulceration - present
mitoses -<1mm 2 square
panthologic stage - pt3b
Note: the lesion extends to peripheral and deep histologic margins. Pan melanocytic cocktail Mart-1 and tyrosinase) is performed. 

How bad is this?
What is the best possible treatment for this?

Thank you
from his son 

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