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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Replies by: Anonymous, Cooper, POW, pd1gal

Hello all,

I represent Cancer Commons, a nonprofit partner of the MRF. We aim to give patients the information they need to make the best possible treatment decisions with their care team. As part of our efforts, we're co-hosting a special program for patients and advocates at the 2014 Personalized Medicine World Conference in Silicon Valley, CA, Jan 27-28.

If you are curious about how things like molecular testing and targeted therapy are changing the treatment option landscape for patients, please join us! You will be able to learn about and discuss these and other personalized medicine topics with other patients, advocates, doctors and researchers.

Registration is available at a generously discounted fee ($100 down from $1500). Learn more about the program, topics and speakers here:

Happy to answer any questions!

Sarah - Associate Editor at Cancer Commons

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Pink's picture
Replies 6
Last reply 1/19/2014 - 3:43pm
Replies by: Jahendry12, Pink, POW, Fen, BrianP

First brain radiation today, and the next 3 days

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triciaches's picture
Replies 10
Last reply 1/16/2014 - 8:05am
Replies by: Colleen66, BrianP, JerryfromFauq, Nadia, Anonymous, Mat, Gene_S
  • I recently had my 2nd melanoma removed. The first was in 2009 on my left shoulder, the 2nd on my lower left leg.  After wide exsision, SLN & margins were clear. My official diagnosis statis is "Stage 1b" (T2a NO MO)

    My November LDH level was 219 with the standard range of 125 - 250 U/L. Since this is on the high side of the range, I am a little concerned.  I have not had any CT/MRI or PET scans done to date.

    Does anyone else have any insight on LDH levels??

Tricia Chappell - Chesapeake, VA

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CasieLV's picture
Replies 4
Last reply 1/19/2014 - 4:01pm

I am a stage 3 melanoma survivor and started my own small business. We sell melanoma t-shirts and give eight dollars of each shirt sold to current cancer fighters in need. We are small, and usually give out anywhere from $100-$200 per person to use on expenses not covered by insurance. Fill out our submission form at


Thanks and keep fighting!



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FayFighter's picture
Replies 5
Last reply 1/20/2014 - 1:51am

Hi Everyone!  First thank you all for being on this site. It has been so helpful since my husband was diagnosed with stage 3C in early August.  My husband finished his fourth round of Yervoy (3mg/kg) on Dec. 20th. Soon after he started having colon issues.  They have him on prednisone to help but I am interested in knowing if anyone has been able to modify their diet to also help with the symptoms. Any and all advice is welcomed.  And again thank you.

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meldad's picture
Replies 7
Last reply 1/22/2014 - 11:14pm
Replies by: HelenQLD, POW, meldad, aldakota22

Hi everyone,

I don't post much but read everyday.

My dad was diagnosed stage 3 in Feb2011  had surgery and 4 weeks radiation. Everything was good until March2012 when scans showed it had spread to lungs. He was on Zel for a good 10months with amazing results but became resistant in May2013. 

Recently, he's just finished ipi at the start of Decemeber and first scan showed 80% reduction/tumors gone but 20% had continued to grow. We just got more scans back this week and it shows continued spread. The Doctors here have said he's only got a few months left!? I feel like they're just giving up, he hasn't tried anything else other than Zel and ipi. Does anyone know anything else he might be able to get into or try here in Australia? I'm desperate! 

Good luck to you all.


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BrianP's picture
Replies 3
Last reply 1/15/2014 - 4:46pm
Replies by: Anonymous, JerryfromFauq, arthurjedi007

This is a video from Jun 13 that I stumbled upon tonight.  I hadn't seen it posted on here before and thought it was a pretty good overview of immunotherapy by Dr. Wolchok.

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JoshF's picture
Replies 10
Last reply 1/15/2014 - 10:55pm

Finished yervoy Dec 9... Scan on December 20th showed no progression and doc said she wouldn't even be concerned about lung nodule as it was a shadow and the obvious prior knowledge of tumor. Felt it was very encouraging news. So had a nice Christmas break with kids and went into hospital Jan 6 to start HD IL-2. Did 11 bags... Couldn't get last one in Friday...couldn't get urine output. 

Anyway, feeling a bit better but wow feel like I've been run over by train. 27lbs of fluid retention... Scary. My dad took pic on day 1 and last Hardest thing is not being able to sleep well. If I could I think I'd feel 1000% better. Cold feet, get chills... General flu like feeling. Not looking forward to next week in terms if dealing with side effects but looking forward to getting on with it. I wish complete response rate was better for patients.... This drug is high price to pay.



Let's work for better treatments....for a cure!!!!

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LKN Captain's picture
Replies 5
Last reply 1/15/2014 - 2:17pm

Just diagnosed Friday, melanoma in situ in my right shoulder. Shave biopsy.

A little background; I'm 28 years old, sum worshipper all my life. I spend summer on my boat or riding my jet ski. Never was a fan of sunblock despite my wife always nagging at me about it. Last summer she noticed a few spots on my back and one on my shoulder that she didn't like. As a typical walking specimen of testosterone, I declined to see a Dr. I've always put up a huge fight about going because I just don't like to see a doctor and be told what to do. The company I work for demanded that we all get routine physicals if we want them to post for our insurance. My wife finally had the leverage to get me to go and show them the coupe of moles.

The doc examined the moles and said, These over here look completely normal, this one on your shoulder is very small, but I do not like it." It was smaller than a quarter of an inch.

He took a shave biopsy (which I am now reading isn't the greatest) and confirmed it is in fact melanoma. He gave me the results a day and a half after the biopsy on his day off. We really appreciate that. He referred me to someone down the hall that has 23 years experience in working with this and is a dermatologist/dermotopathologist or whatever, whom will be doing a wide local excision in two days from today.

His original diagnosis was in situ stage 0. He added that it was caught early and this will not kill me, just leave a scar and so fourth.

Coming to find out staging is very difficult if a shave biopsy is done and I'm wondering why they would specify if it is unknown.. Probably to keep me sane until the procedure is done? I nearly lost consciousness having the biopsy because I looked at what he was doing. I've never passed out sober before, I just became very confused and couldn't hear him talking to me, then the nurse ran in and the lights went dim.

Any questions I should ask on Wednesday when I get my shoulder whittled on?

Thanks in advance.

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Anonymous's picture
Replies 12
Last reply 1/19/2014 - 11:27am

I've poked around using the MPIP "search" function.  I'm not finding many ipi success stories (other than Jerry from Cape Cod).  Maybe a question for the old timers, but can you recall situations where the patients have had the standard FDA-approved course of ipi (4 infusions) and got great results?  Maybe all of those folks have left their melanoma lives behind and no longer post here?

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Anonymous's picture
Replies 4
Last reply 1/15/2014 - 2:20pm

I recently had my 2nd melanoma removed.  The first was in 2009 on my left shoulder, the 2nd on my lower left leg.  After wide exsision, SLN & margins were clear.  My official diagnosis statis is "Stage 1B (T2a NO MO) 

I wanted to find out what the standard protocol is for both imaging tests (PET, etc.) as well as treatment protocols others are using. 

I fully appreciate that, at this point, I am considered early stage...and I am profoundly thankful for that.  But given that I have now had "2" primaries, I would sleep better if I were given a PET scan or something to put my mind at ease!


Tricia Chappell - Chesapeake, VA

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Anonymous's picture
Replies 3
Last reply 1/13/2014 - 2:51pm
Replies by: POW, Anonymous

This is only available for two days, free full text.  I tried to save in pdf, won't work.  Saved to text file messes up the chart.  So, after two days, I can provide the text if the spam filter does not block it again.  Sorry, very frustrating.

It looks like it is very good info.

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Anonymous's picture
Replies 5
Last reply 1/13/2014 - 7:24pm
Replies by: Richard_K, POW, Anonymous

Again getting the spam filter blocker message, like last week.  Have a full text article only available today and tomorrow on braf inhibitors.  Looks to be very important.  So, please fix that spam blocker.

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Replies by: Golda_, Tina D, Mat

Merck Initiates Rolling Submission of U.S. Biologics License Application for MK-3475, an Investigational Anti-PD-1 Immunotherapy, in Patients with Advanced Melanoma

Expects to Complete Application in First Half of 2014
January 13, 2014 08:30 AM Eastern Standard Time

Read more: Merck Initiates Rolling Submission of U.S. Biologics License Application for MK-3475, an Investigational Anti-PD-1 Immunotherapy, in Patients with Advanced Melanoma - FierceBiotech
Subscribe at FierceBiotech

I'm me, not a statistic. Praying to not be one for years yet.

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Golda_'s picture
Replies 2
Last reply 1/14/2014 - 2:43am
Replies by: Golda_, GAngel
Hello all!
Friends , we need your advice.
As I said , we are self-treatment my Mom. In our city treated melanoma still with chemotherapy.
Mom started taking Zelboraf with November 2013 . Had a lot of side effects. After 5 weeks of treatment ( 8 tablets , then 6 , then 4 ) mom took a break of 12 days. It seemed to her that the tumor began to grow. Then again began to accept : a few days 8 tablets , 6 ... 4 ... After 18 days of receiving again took a break ...
Swollen hands . Under the skin on the palms have air bubbles as the after burn . Mom does not go out into the street. Fell eyebrows and hair began to fall .
I read a lot about taking Zelborafa with pauses . 4 weeks + 2 week break . 4 weeks &4 weeks .
Does anyone have experience of receiving it Zelborafa with pauses ? Share your story !
Can 8 tablets is too much weight to 62 kg = 137 lbs?
Reading the forum , there was one more question: When you receive combo drugs are taken without pause?
Who first took Zelboraf and then Combo - why you switched to a combo ?
Thank you!

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