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
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 

Login or register to post replies.

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.


Login or register to post replies.

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.

Login or register to post replies.

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 :)


Login or register to post replies.

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.

Login or register to post replies.

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. 

Login or register to post replies.

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. 

Login or register to post replies.

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! 

Login or register to post replies.

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

Login or register to post replies.

Maria C's picture
Replies 6
Last reply 10/3/2016 - 5:13pm

Hi all,

Yesterday I had my third infusion of pembro and am dead tired today, with an achy body. We restarted immunotherapy after a summer (June - August) dealing with brain mets recurrences that have left my scalp very sore and tender from the radiation. I've also had all 4 ipi-nivo infusions last year.

What confuses me is trying to identify what are side effects from the immunotherapy and what are just "normal" health issues. For instance, I've had hot & cold flashes for many months now, and believe I am in menopause (I'm at that age). However, reading these boards I have learned that others experience fevers and chills (at any age). In addition, my knees ache today like I've got the flu, plus I walked all over the city yesterday surrounding doctor appointments ... but I've read on these boards that "joint pain" is a common side effect.

Also I noticed my feet occasionally feel differently lately but it's NOT tingling. Am I imagining symptoms or are they real? How do we know what's what?

Any & all thoughts appreciated!

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

Login or register to post replies.

Replies by: Melodygrace, slh4448

Hi all,

This may be a long shot, but I am wondering if any of you can recommend a good dermatologist in the Kansas City area. 

I have not had melanoma, but have had several dysplstic moles removed and have an immediate family member who had melanoma.  I know my risk is high, so I am looking for a reliable dermatologist.

Do any of you have an experience with university hospitals? Pros/cons? 

Or any websites where I could find reviews? I am having trouble finding much information right now.



Login or register to post replies.

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?

Login or register to post replies.

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...








Login or register to post replies.