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
Millykamp's picture
Replies 5
Last reply 9/22/2015 - 4:55pm

Made a post and have NO CLUE where it is..  


Ok ok I got an embarrassing question to ask 


I had WLE and SLNB done 5 days ago 


my WLE doesn't hurt at all  my SLNB does., I still have a dressing on it and some kind of derma bond tape of some source. They said it to stay on till I see the Dr. a few weeks 


The SLNB was done on the shoulder armpit area not quite under the armpit. Anyways. It hurts, even on my side of the breast.  I am wondering is it because do they cut deep? Cut into the nerves??   




Login or register to post replies.

sweetaugust's picture
Replies 10
Last reply 9/22/2015 - 10:04am

Hi all,

As of October 1st it will be 3 years since my stage 4 diagnosis.  I've been on Keytruda (10mg every 3 weeks) since Halloween 2012.  I'm still on it with no end date planned and really am not having any side effects from it at this time.  

I scanned again a few weeks back and all is great.  I haven't really been on the site for the last few months because I was out enjoying the summer and just enjoying life with my boyfriend.  I quit my job in June and moved out of the city to live by the ocean and live a more natural, calm life.  All is great and I hope you all had a great summer as well.

All my best, Laurie

Login or register to post replies.

jamieth29's picture
Replies 3
Last reply 9/22/2015 - 9:29am
Replies by: dentholla, jbronicki, DZnDef

Feel like the first positive news I've had. As i posted before i have been taking braf inhibitors for 6 weeks now. My local oncologist is on vacation but i am able to text him. I asked if he seen my ct results from scan last Thursday and he replied that the 18mm iliac lymph node that showed on last scan has shrunk to 7mm. I knew the drugs were working because the in transit spots that were visible on my scar had all shrunk. I so wish the braf drugs would keep working. They are powerful drugs. Hopefully this gets me back to surgically resectable. I celebrated by helping a buddy track a big 10pt buck and proceeded to have a couple to many beers today! I am from Wisconsin so today was great. He is going to text me full report tomorrow.

Login or register to post replies.

_Paul_'s picture
Replies 21
Last reply 9/22/2015 - 12:21am

What an odd thing to celebrate - my one year anniversary of stage 4'ness. When my oncologist told me I was stage 4 on 9/10/14 he said the "conventional" survival was less than a year. Googling revealed several sources citing that 7 months was the median survival.

But here I am and not dead yet!

I am truly (as are all late stage survivors) on bonus time. Without all the help from my team at SCCA, and the considerable melanoma research that has been and continues to be undertaken all over the world I am pretty sure I would not be able to type these words in. Also, I have learned so much from all the contributors to this site that has allowed me to make intelligent decisions about the path I am on.

I have absolutely no idea if this will just be a respite from the disease or a long term durable response, but I do know enough not to waste my bonus days!

I am just so humbled and so incredibly grateful.

- Paul

Login or register to post replies.

_Paul_'s picture
Replies 2
Last reply 9/21/2015 - 11:57pm
Replies by: _Paul_, Bubbles

I thought I would take a minute to share my experience with this new drug.

I have been experiencing greater and greater fatigue the more Keytruda treatments I take. It got to the point that I needed to take 6 weeks off work. My oncologist suggested a Keytruda holiday, which did result in my fatigue resolving, but after the subsequent treatment it returned.

A friend suggested I try Provigil, a newer drug originally prescribed for those suffering from narcolepsy and other sleep related disorders. It is gaining popularity for off label uses, including ADD.

Anyway, I have been on it for the last several days and it has brought me back to feeling normal. It is a huge relief. I do urge anyone considering taking it though to consider the fact there are no long term studies available yet. So there is some risk for sure. For me, with all the other uncertainty one faces at stage 4, it is worth it for the quality of life.

I hope this post is useful to others suffering from fatigue.

- Paul

Login or register to post replies.

momof4boys's picture
Replies 1
Last reply 9/21/2015 - 10:40pm
Replies by: ET-SF

So I had my clnd done 2 years ago and out of nowhere I know have 2 little black dots on my scar. They are close together. I know it's not a stich because I have one of those on my wle. It's not a hair either. What do you guys think? I think I see my derm next month.

Login or register to post replies.

Debbieamccoy's picture
Replies 13
Last reply 9/21/2015 - 10:24pm

4 weeks ago all my scans were clear to day a MRI showed probable mets to liver after first dose of yervoy 3,weeks ago I am so upset and discouraged any and all advice 

Login or register to post replies.

Anonymous's picture
Replies 8
Last reply 9/21/2015 - 8:51pm
Replies by: Anonymous, ET-SF, Never Gonna Stop, casagrayson

It's two days after being told my biopsy was cancerous, and I'm very worried.  I've been reading up on things as I can.  I have an appointment with a surgeon in 1.5 weeks for sentinel node removal and analysis.

I visited my GP today who had the pathalogy report.  The things I remember from the doctor are:

* superficial spreading

* Clark level IV (this is the part that scares me)

* non-ulcerated

* I saw the number .85mm but don't know in what context (the width was around 5 mm)

* mitosis of 1 / mm^2

Are there any words of encouragement or analysis of the data that I do know so far?  Or is it too early?


Login or register to post replies.

Rea's picture
Replies 5
Last reply 9/21/2015 - 8:45pm

Hi everyone

My husband will begin Yervoy next week.  I want to stay ahead of the game and make sure he's getting good nutrition during the treatment.  Any suggestions from those that have been through the treatment and what worked best for you?  Also how did you handle side effects?



Login or register to post replies.

Dear MPIP Community:

We wanted to let you know about an upcoming melanoma support group, sponsored by CancerCare, that is currently recruiting patients. This 15-week online support group is for people diagnosed with melanoma who are currently receiving treatment. In this group led by an oncology social worker, patients give support to each other and share resources and information.

To join this group, you will need to complete our online registration process HERE

After joining this password-protected group, you can read and post messages 24 hours a day, 7 days a week.

The support group will run from October 1, 2015 - January 15, 2016.


Shelby - MRF




Login or register to post replies.

pookerpb's picture
Replies 10
Last reply 9/21/2015 - 10:45am

I see so many of you go great distances in hopes of being part of new trial, or seeing a specific Melanoma Specialist. My husband was just kicked out of his most recent trial, and although he can continue to have his Keytruda portion of it fairlyl close to us, I would like to look at other options since its obvious it is not working fast enough to keep his stage IV stable.

We have been traviling back and forth about 3 hrs for the last few years which seems like so far initially. After hundreds of trips it does get shorter as it seems. I know that there were several individuals who flew in to where we going from Chicago, NY, all over. With two young teens at home, the 3 hour drive for us one way, was exhausting enough and come home and do the day to day stuff that needs done.

I am curious how some of you travel and afford to travel to different places for consults and such? Once you are established in your trial, do you fly there for each and every treatment, scan etc?

I guess I am not willing to accept that continuing Keytruda when it isnt working for my husband. But I dont know how to proceed. I know my husband does not want to take the time away from family, traveling all over and God knows we dont have the money.

Can anyone give me any suggestions on maybe a way to make it feasible to do, or how you do it?  Especially for those still working?



Login or register to post replies.

Christine.P's picture
Replies 17
Last reply 9/21/2015 - 10:04am

I am currently said to be a stage 3b melanoma patient and will be having scans next week to determine if there has been any spread to distant nodes or other organs. My surgeon feels optimistic that it hasn't spread past the one (rather large) sentinal lymph node that he removed two weeks ago.

He also seems to be sort of half-heartedly recommending Interferon if I am indeed staged at 3b. It's as if he knows the statistical benefit isn't that great, but has no other options at this stage. I will know more at my next appointment next week. 

My question is this: Are the side effects of Interferon worth it to see only a 3% improved chance of longer-term survival? I am researching some articles and leaning toward not doing the Interferon at this time, but also don't want to be too hasty in deciding. 

Does anyone have information or personal experience that can help me make this decision? I want to fight this insidious disease, but also don't want to live with flu-like side effects - and worse - if the benefits are negligible. 

Thank you in advance for your input.

Christine P. 

Login or register to post replies.

Remi's picture
Replies 8
Last reply 9/21/2015 - 4:47am
Replies by: stars, Momofjake, ET-SF, Anonymous, Remi

I was diagnosed just over a year ago with 0.4mm VGP no miotic rate which was all removed and I had a year of quarterly check ups. I was discharged in June and haven't given it much thought since until this weekend as I have a red spot growing in the middle of my scar and can feel it as a tiny raised bit. Can you gets spots on a scar? Should I be concerned our would it be black if it was recurrence of melanoma?

Login or register to post replies.

CHD's picture
Replies 14
Last reply 9/21/2015 - 12:02am

Haven't seen her here for awhile.   Enjoy her posts!  Has anyone heard from her?  Is she doing ok?

Login or register to post replies.

peppi's picture
Replies 2
Last reply 9/19/2015 - 2:19pm
Replies by: peppi, vivian

I have both Lupus and Melanoma and am finding it difficult ot find treatment options other then surgery as my oncologists will not give me immunotherapy due to the Lupus. Does any one know of other treatment options or trials for those with both Lupus and Melanoma? I am stage iv with my 2nd wide excision on July 11th 2015. My treatment plan is to repeat ct in two weeks with close monitor. I had mets to one node under my right armpit. The idea of monitor and wait to see is not comforting. Any suggestions?


Login or register to post replies.