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
snow white's picture
Replies 10
Last reply 10/14/2016 - 5:39pm

So Dad is going to City of Hope tomorrow.  But, I don't know if its with a Melanoma Specialist.  Can anyone recommend an excellent doc in the LA area?

Much Appreciated!!!!!


Login or register to post replies.

Elana's picture
Replies 2
Last reply 9/26/2016 - 3:46pm
Replies by: Elana, WithinMySkin

Hey Everyone,

I was diagnosed with Stage 3B in late June 2016. I joined the interferon/ipi vs keytruda clinical trial and was randomized to the standard arm and went with interferon. I know that decision is somewhat controversial but that's not what I am posting about here.

After 2 weeks of high dose interferon infusions we had to hold because my LFTs were off the charts. My AST was in the 500's and my ALT was in the 200s. A week later one of my LFTs was still 5x the normal limit so we decided to drop from the trial in order to not miss out on 2 full weeks of HD infusions (which my oncologist felt was the most important part). We waited 4 more days until my LFT's were in the 80's (ALT) and 60's (AST) to restart treatment. That was this past thursday 9/22. They restarted me on a 33% dose reduction (21 million units or something like that). 

Yesterday, after my infusion when I was leaving MGH, I felt like I was having epigastric pain. It felt like a lot of pressure or gas. I thought maybe it was heartburn and I took some tums and rested for a bit before I went to ultimate frisbee practice where I ran around for 3 hours without any problems. Then last night when I went to lay down in bed I felt this overwhelming pain and pressure in my epigastric area. It was not a burning sensation like heart burn. It kept me up most of the night and eventually I realized it hurt more on my right side. This morning it hurts to walk around and breath deep and the pain is dull but hurts more on my right side, just about where my liver should be. I don't have any jaundice, nausea, or any other symptoms. My stools are light brown and not clay colored. The pain goes away when I sit upright. I told all this to the nurses and a doctor took one look at me and said I was fine. 

Mostly I am just wondering if anyone else has ever had these symptoms?  What it might mean? Should I ask to get my LFTs re-checked? I have my last day of infusions for the week tomorrow.

In general I have been doing great with the interferon treatments, my oncologist cannot beleive it. I am 29 and was in the best shape of my life when I was diagnosed. I have continued to stay active and only really ever have symptoms on the first 2 days of treatment, and they are managed well with excedrin/tylenol/zofran.

Any info people might have is greatly appreciated. Thanks!



If you are interested in my whole story, I have been writing a blog:


Stage 3B 6/2016

Login or register to post replies.

CindyCo's picture
Replies 7
Last reply 9/26/2016 - 12:07pm

I was wondering if anyone could give us advice as to whether to have a surgical oncologist or colorectal surgeon perform my mother's surgery.  She will most likely need an APR resection and inguinal lymph node removal.  We have an appointment with a colorectal surgeon (who has great credentials and used to be chief of surgery) this Tuesday, September 27, but we cannot meet with a surgical oncologist until October 4 (he has a packed schedule because he is in demand). 

Because we are currently inclined to take the earliest surgery possible, does anyone have any insight as to whether we should hold out for the surgical oncologist or vice versa? 

Login or register to post replies.

Momofjake's picture
Replies 7
Last reply 9/26/2016 - 1:06pm

Quick question,

Jake is finally debating ipi. I felt a little inspired at 4am:) If he is going to give a new treatment a shot, wouldn't a combo be better?? Why not ipi/nivo?? Or what else? He has done: interferon, biochemo, rafiation(tons), pembro, and TAF alone due to side effects. I read his scan report. It's pretty darn good compared to 4 mo ago! It feels like he has a shot at clearing this out even more if he tries a combo. I think he is about to give up, go natural and feel good as long as possible without hospitals and feeling crappy. I want to give him some hope❤️

Thanks all--Kerri

Login or register to post replies.

MoiraM's picture
Replies 4
Last reply 9/26/2016 - 2:14am
Replies by: MoiraM, debwray, Polymath

I joined a forum in the UK because my melanoma specialist nurse hinted that she would really like me to. The forum is an obvious first port of call for people with melanoma in the UK, because it is part of the website of the biggest UK cancer charity. Even so, it isn't very active and there was no one contributing with endocrine side effects of immunotherapy.

My problem is, what do you say to people who have been diagnosed with malignant melanoma (or whose relative has been diagnosed with it) and are absolutely convinced that they (or their relative) have been condemned to death?

It doesn't seem to have any correlation to the patient's staging. Often it is someone who is stage 1 or stage 2.

I guess I could just not reply but that seems mean when they are reaching out. Also, it is often only after they reply to my response that I find out that they are not being swayed by facts or logic.


Stage 3C Ipi/Yervoy [3mg/kg] responder with phobia of doctors/hospitals and pituitary dysfunction caused by Ipi/Yervoy

Login or register to post replies.

Anonymous's picture
Replies 5
Last reply 9/25/2016 - 3:03pm
Replies by: Ed Williams, debwray, Anonymous, MoiraM

Hi,  I have been scanning these boards and have been inspired and immpressed by the knowledge that exists here.   I know I probably have a very unique situation that probably no one can offer much help with but I wanted to ask in case.  Here is my background.  I had a legion on my arm removed in 2008 that came back "atypical spitz nevus" with heavy lichenoid inflammation.  I had it further exised and have never gave it much thought since.  In 2015, I had a suspicous mole on my toe removed that they pathologist kept sending off for 2 and 3rd reviews.  However, when the final consensus came back it was determined it was fine.  That place on my toe grew back (was a shave biopsy) and the dermatologist did not seem concerend.  However at my last 6 month checkup, he looked at it and said he would have it excised completely since it continued to grow back and given the fact that I was pregnant.  So, I went to the surgeon to have this done.  However the surgeon recommended against the removal due to risk to the baby.  So, I decided to wait till after delivery.  Over a year ago, I had read of the Oncoblot Test (an early detection cancer blood test) and decided to take it.  Well, to my suprise the results came back last week Positive for melanoma.  The blood test is suppose to be able to detect a tumour that is 2mm or larger.  Which is why they call it early detection, however from what I am reading on melanoma 2mm does not seem that early.  So, now I have this information that I have melanoma but am not even sure where.  Plus the fact that I am 8 months pregnant.  I thought about trying to get into MD Anderson as I feel my case is unique.  I am not sure what to do.  I did call the surgeon about my toe and they indicate I can not be seen untill November 21! 

Login or register to post replies.

Hello all,

There is a new peer support group for melanoma patients, fighters and caregivers starting up in Alexandria Virginia.  This is part of a program supported by the Melanoma Research Foundation to seed new support groups around the US.

Meetings will be the second Thursday of each month beginning October 13, at Commonwealth Baptist Church, 700 Commonwealth Avenue, Alexandria VA 22301, at 7:00 pm.    

Questions, comments, or suggestions?  Reply to this thread or email



Login or register to post replies.

Anonymous's picture
Replies 1
Last reply 9/24/2016 - 11:16pm
Replies by: debwray

I had a mole removed from my neck a little over a week ago. It was itchy and inflamed and had grown recently. The doctor put in the orders that they were trying to see if it was melanoma. I think she used the initials AMM. I got my printed results today and I'm kinda confused. The nurse called and said my mole was basically growing scar tissue; however, I'm unsure why an uninjured mole would do this. These are the pathology results that were written down: Desmoplastic compound nevus. p16,

MART-1, and Ki-67
immunostains examined.

Specimen labeled right neck is a 0.6 cm in diameter x 0.4 cm in depth
punch of tan skin with a 0.4 cm central brown papule. Entirely
submitted in 1A - three fragments.

Is this something to be concerned about or get a second opinion on? 

Thanks for the help. 

Login or register to post replies.

Anonymous's picture
Replies 6
Last reply 9/25/2016 - 11:32pm
Replies by: Patina, Anonymous


I recently had a melanoma scare.  Everything is fine now.  I want to get continuous screening from a dermatologist that is a melanoma expert.  All dermatologists I found are mainly cosmetic.  Any recommendations of melanoma dermatologists in LA or the OC area?  Or Southern California?

Login or register to post replies.

tkilburn's picture
Replies 6
Last reply 9/24/2016 - 12:31pm
Replies by: Anonymous, tkilburn, debwray, Julie in SoCal

Can anyone help me understand what all the stuff on the pathology report means? 

Login or register to post replies.

beans920's picture
Replies 3
Last reply 9/28/2016 - 8:47pm
Replies by: beans920, Polymath, Fen

Hello to everyone,  I have been a poster in the past  but have not had much to say as I awaited my quarterly scans.

Finally had my Pet scan, MRI and blood work on Wed.  I have had 2 wks. of radiation  and was started on Pembro now receiving my 6th dose.  Blood work was all in normal range. Full  Pet scan only showed the tumor on my sternum which has shrunk by 60%.  I figured it was down as I couldn't feel it anymore.  I did have a speck  show on the MRI on my left front brain area.  Dr. not sure if its new as I have not had MRI before always full body Pet scan.  Pet scan showed nothing active in brain area.  Will repeat MRI in six weeks during my 8th dose of Pembro.  No side effects yet, feeling good.  Prayers and Best wishes to everyone out there.   Beans

Login or register to post replies.

CindyCo's picture
Replies 13
Last reply 9/25/2016 - 7:25am

My mother was diagnosed on September 6 with Anal Melanoma.  After CT/MR/PET scans, we have learned that the mass is 4 cm and that it has spread to her inguinal lymph nodes, but nowhere else.  The doctor told me that she has 10-15 months due to micro metasteses, which broke our hearts.  However, I see that there are a lot of long term survivors on this message board. 

Does anyone know of a survivor with a mass as large as 4cm? Even the cutoff on the drop down menu is 4mm, not cm. 

My mother is also afraid of an APR, especially since the doctor told us that he wouldn't recommend it since it won't extend her life. 

We are part of Kaiser Permanente, which does not seem to be very specialized in this area, but since it's a closed network I'm having a difficult time trying to get them to agree to giving her a second opinion at one of the bigger institutes I see all over these boards(EX: Dana Farber, MD Anderson, Sloan Kettering).

We have also put her on a vegetable-heavy vegan diet for the time being.  We figure this can't hurt.

Login or register to post replies.

BrianP's picture
Replies 2
Last reply 9/22/2016 - 11:47pm
Replies by: debwray

Research at MD Anderson trying to discover why immunotherapy doesn't work in some patients.

Login or register to post replies.

Spl25's picture
Replies 4
Last reply 9/23/2016 - 11:57am

I'm a male, 30 yo. Diagnosed in July-  stage 4 w multiple mets to bone, liver lungs and spleen. largest tumors are 2-3cm. I've been on pembro since august 4, and have my first ct/MRI coming up. If it shows progression of disease, is the next logical step ipi/nivo? Fairly certain I'm braf mutated. If I'd like to explore clinical trials/travel to MD Andersen etc, should I pause treatment to do so? Or jump right into whatever my doc here (a Midwest NCI research Hospital) recommends? Perhaps they have their reasons for doing so, but my doctor has been pretty opaque about what they will do next. 

Login or register to post replies.