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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AshleyS's picture
Replies 2
Last reply 10/6/2016 - 8:55am
Replies by: debwray, Anonymous

Ugh. I've tried posting multiple times so I'm going to keep this short. 

My 4-year-old daughter has a mole that I've been watching for awhile. Honestly, I've been worried about it but with my history (stage IV, currently NED) I get paranoid with my kids' skin. Today I noticed it is scabbed. Of course she doesn't remember scratching it. 


We live in rural North Dakota. I doctor at MD Anderson for oncology but see my dermatologist in ND because I feel like she's more thorough than anyone I saw at MDA. Should I push for it to be removed (it's on her left temple)? Should I trust my local docs or go somewhere bigger? If we stay in ND, should I ask for the biopsy to be sent to Texas?

Im jumping the gun because my doc's office was closed but I'd appreciate thoughts. 




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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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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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snow white's picture
Replies 3
Last reply 10/5/2016 - 7:03pm

Just found out that Dad is BRAF Negative :(


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Daisy27's picture
Replies 2
Last reply 10/5/2016 - 5:31pm
Replies by: Daisy27, jyc

My husband has now had four different cancers...bladder, colorectal, vocal chord and now mucosal melanoma.  He is getting Keytruda infusions every three weeks and is waiting to be acceptes for a clinical trial where they will inject directly into the spot on his neck.  Would love to hear from thers with th same unusual melanoma and how it has been treated.

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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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Anonymous's picture
Replies 3
Last reply 10/5/2016 - 3:01pm
Replies by: Treadlightly, Anonymous, debwray

Hi everyone,

I'm brand new to posting but have been lurking for a couple of months. I have a LOT of moles so have been monitoring them fairly closely for a number of years and have been on a 6-month skin check schedule with my derm for the last 3 or 4 years. I have had several moles removed in the last 10 years that were in various stages of dysplasia. I had a mole removed from my upper back in May of this year that came back melanoma in situ. In a lot of ways I was not shocked because my father died of cancer (not melanoma) and my mom died from a retinal melanoma that metastesized to her liver and other organs so I certainly had the family history. The mel was removed and then I noticed a dark mole on my left cheek that was not very big but that I had not noticed in previous months and it looked really strange (in a bad way) so just had it biopsied earlier this month and it also came back as MIS and will get it excised in a couple of weeks. I had just kind of come to terms with the first MIS and was really taken aback with this second one because I didn't expect to have another mel in such a short time period. I have felt anxious, depressed, sad, but grateful and know I am very, very lucky to have caught both of these in the early stages. But it has really rocked my world and left me depressed and not knowing what the future holds for me. I look at all the moles I have and think they ALL look questionable at this point as I am super-scrutinizing everything. I know that is unreasonable and I think it is just a stage that I need to get through. I have an appointment with my derm next week just to sit down and discuss my situation to answer my questions and see if there is anything else I could be doing (other than the obvious and important things of staying out of the sun, wearing sunscreen and long sleeves, etc.)

I guess I just wanted to "unload" all my feelings on the boards and most of all wanted to say thanks to everyone for posting all the great information and stories about what they are going through. I am trying foremost to educate myself about mel and be super vigilant on my monthly skin checks. I had my husband take a lot of photos of my body so I can compare against them every month. I have a lot of moles on my back, which are a lot more difficult for me to monitor and I get very anxious about those especially having this 2nd mel. Thanks for letting me tell my story and to vent my feelings and emotions and thanks for all the communal support each and every one of you provide! I have found it so helpful.


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Anonymous's picture
Replies 1
Last reply 10/5/2016 - 2:48pm
Replies by: debwray

This trial aims to test safety and effectiveness of the combined treatment with pembrolizumab (Keytruda) andvemurafenib (Zelboraf) in patients with stage 3 or 4 melanoma. The main outcome to be measured will be the response of the tumors to the treatment. This trial is recruiting in Pittsburgh, Pennsylvania (US)



Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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snow white's picture
Replies 4
Last reply 10/5/2016 - 2:16pm

My Dad (and Mom) met with Dr. Christopher Dumas and Dr. Amanda Shroyer today at Hoag.  Dr Dumas is a brain surgeon and specializes in the Gamma Knife.  Dr Shroyer is a specialist with the Cyber Knife.

My Dad called me (unfortuanely I am away on a Business trip that he was supposed to take) this afternoon and sounded very good on the phone, he said he felt very confident in the Doctors and felt that they answered any and all of his and moms questions.  Dad was worried that he had to many mets (8+) to do it, but the doctor reassured him that he has done 20+ before and not to worry.  Dr. Dumas inquired where else Dad has mets and Dad told him that he has them in the Spleen, lower abdomen and upper thigh.  Dr. Dumas said that they could use the Cyber Knife on those, but that the most important right now is the Brain.  They will do the procedure on Thursday with a High Def MRI just before.  I told Dad not to be surprised if they do the MRI and they see more than they origanally told him that he had.  So he is prepared for that.  

We still havent heard back from Dr, Margolin at City of Hope to see what treatment he will do afterward, she is on Vacation until the 13th.  

So praying all goes well on Thursday!!


PS. Still absolutely no symptoms, he said "I feel just fine, just like I did before" LOL.  I said well that's a good thing :)


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Anonymous's picture
Replies 2
Last reply 10/5/2016 - 12:59pm
Replies by: Polymath, Bubbles
Daisyduke's picture
Replies 12
Last reply 10/5/2016 - 12:35pm



I just got back from my appointment and what t thought was a Stage III B prognosis turns out is Stage IV and the Doctor wants me to start either Keytruda or Opdivo,  Which one do most people use and how bad are the side effects?


What have you found to be the success rate when you go back for further scans?  The Doctor seems to feel that this is the best option for me and probably the only choice for right now.  I guess once you are on this drug it is for life is what I have heard.


What is the best and easiest way to get these drugs administered that you have found, going in through an IV in you arm, a PICC line or a PORT?  I am still trying to cope with this new information so I can move on and make the right choice.


I know that with this support group out there I will be able to cope and make it.


Thanks everyone.

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Lizz's picture
Replies 9
Last reply 10/5/2016 - 10:17am

Hi I was diagnosed with melanoma three weeks ago.  Its all very scary and everything feels so uncertain.  I just want to make sure Im doing everything I should be.  I had an appointment yesterday with a surgeon who said at the moment I was at a stage 2b.  He spoke about a sentinel lymph node biospy giving me the impression that this was not the best route to take and I should just "sit and wait" and see how things go.  I really dont want to just do nothing and wait for the melanoma to spread!.  I decided to go for the sentinel lymph node biospy regardless.  I am hoping to have an appointment within the next two weeks.  The brislow on my nodular melanoma was 5.5 (on my arm), I get the impression that because it is so large that it is likely that the melanoma has spread?  Anyone else had a sentinel?  If it has spread to lymph glands does that mean it has probably gone elsewhere as well.  Sorry for all the questions but  im new to all this. 

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Sgarceneaux's picture
Replies 4
Last reply 10/5/2016 - 8:51am
Replies by: Fish, Becky, Anonymous, Janner

My 11 year old daughter was just diagnosed with an atypical Spitz tumor that started in the scalp and now has moved to the lymph nodes in the neck. The initial pathology was done at UCSF and further test are being done at Sloan Kettering. We are currently seeing our local Pediatric Oncologist/Hematologist who has advised us to hold tight  for the test results to come back and do a PET scan in 2 weeks. I am looking to get a second opinion as not to waste time and he said he would facilitate this for us but I want to make sure I go to the best place for this second opinion and don't waste anymore time. Does anyone have any experience with this type of tumor and where the best place would be to go? Any info would be greatly appreciated. 

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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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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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