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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eturner's picture
Replies 4
Last reply 9/2/2014 - 10:06am
Replies by: eturner, Owl, Ed Williams

Here is an update on my husband... He has been on the braf combo for about 5 months now he stared having a slight amount of pain in July ( Oncologist said was probably nothing and CT showed stable bone mets), I knew in my gut something was wrong. Two weeks ago he finally said the pain was more than he could handle and he needed to go back for more scans..... CT showed stable bone mets, Doctor agreed to do MRI due to pain...... Friday he had his MRI, as of this moment I have yet to hear from his Oncologist.... His PCP however has callled me and said that the MRI shows his L5 Vertebra has a burst fracture due to tumor growth and a very large very deep met in is right femur, along with mets to spine, hip and pelvis from pervious scans!!! I am beside myself and scared out of my mind..... My husbands PCP said he was shocked no one had called us considering the severity of the L5 brake.

 So I know the combo has run its course and I know PD1 is the best option we have, I'm just nervous about what I've read about the time it takes for med to take affect. Advice and Support needed... THANK YOU!

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Schwan-a-cure's picture
Replies 1
Last reply 9/2/2014 - 1:17pm
Replies by: RJoeyB

Has anyone had proton therapy for brain mets?  Do you know if they can treat multipules at once or if they can treat more because of protecting uneffected tissue?


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Exhausted's picture
Replies 7
Last reply 9/8/2014 - 11:08pm
Replies by: Exhausted, Patina, Janner, Anonymous


I have a very dark brown mole that is literally 1mm in diameter that I've had for years that I am a bit concerned about.  My dermatologist has no concern, but I started searching the internet and found multiple stories of people talking about "pin head sized melanoma" which are getting me a bit worried.  However, I can't seem to find any pictures to compare.  Does anyone here have pictures, links to pictures, or experience with a literal pinhead sized melanoma?

Thank you!

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Anonymous's picture
Replies 7
Last reply 9/4/2014 - 9:02am
Replies by: hannahcopeland1, Anonymous, RJoeyB, Tim--MRF

Can anyone tell me if they have taken temozolmide and whether it has been successful

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jualonso's picture
Replies 3
Last reply 9/2/2014 - 10:03pm
Replies by: Bubbles, jualonso

Hi friends, 

i would like to ask for an advice from you, now i have to take my first important decision, Today my PET/SCAN has revealed Progression on COMBO BRAF INH. then i have to go one step forwards.

In this moment what i have available is Ipilimumab, because EAP of pembro is just after fail ipi.

Other Option could be wait a little to see clinical trials i can do it, Im in Spain and nothing interesting is available at the moment.

I have decided with my doc because just a new spot is in my lungs but other are still missing that we are going to continue with the braf inh, till i decide what to do next. I have low Tumor burden so far.

I would really apreciate your advices


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Johngifford's picture
Replies 7
Last reply 9/5/2014 - 7:52pm

Went to optometrist had images from two years ago when I visited him last month he said he found something that had grown significantly in the two years probably choroidal melanoma. so I went to my primary doctor Dr. Bailey's office in Ventura got referral for retina specialist Dr. Hung at Seaview medical Center nice doctor she agreed with diagnosis and wanted to send me to UCLA the closest and really only ophthalmolic oncology center in our area. so back to my primary doctor to get referral from my blue shield HMO, so their reply came back last Friday, need to be seen inside our network, and they referred me back to Seaview. Who had already told me I need to go somewhere else. And that my tumor is stable, which is not true. And I do not know where they got that from. I am frustrated, and I feel like too much time is going by. I don't know how to handle this Hmo Any response would be appreciated thank you John

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MattF's picture
Replies 6
Last reply 9/9/2014 - 11:59am
Replies by: Anonymous, jualonso, Bubbles, arthurjedi007, BrianP, ecc26

Been a while....

Stage IV since Dec 2013

BRAF Combo effectie fail after 6 months.

on 3rd infusion of Ipi next week.


Recent scans (July) showed 7 new spots on the brain. 

Start RadioSurgery on Tues 2 Sep 2014....

Still on Ipi and Xgeva for other tissue and bone mets.


So the brain mets...largest being 1.9cm x 1.5cm are the closest alligator to the canoe now and the immediate issue.

So the plan is in place.


oh as a side note anemic with low hemoglobin over the last 14 days needing 2 blood that also is of course on our radar.


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Schwan-a-cure's picture
Replies 5
Last reply 9/2/2014 - 12:54am

Hi Everyone,

My husband Joe (30) was diagnosed with melanoma at stage IIIb a little over a year and a half ago.   Had surgery to remove and lymphnodes out then was on a trial of yervoy for about 3 rounds until side effects put him in the hospital for a month.  At that point everything was coming back clear until 6 months later when we found a few brain mets and 3 spots in the chest.   We did whole head radiation and was put on zelboraf (he is BRAF positive).  Zelboraf seemed to work and cleared up the chest, but the brain mets have been annoyingly difficult.   He was put on temador and did radio surgery.   Things seemed to be doing well until the end of this July.   

We found that the temador wasn't working and that more mets had been popping up.  Radio surgery again on the biggest ones.   We have also done a PET recently and found 3 small spots back again ( 2 in liver and 1 in thigh).   His oncologist has started him on BCNU.

Then the biggest blow this week:   MRI shows more brain mets popping up and the radiologist essentially said that he didn't know where to start since there were so many (I believe about 40 small total now...)   and that another round of whole head was out and that the radio surgery wasn't really an option for fear of long term damage.   

What I was hoping to get from all of you was some advice:   Any reccomended drugs or treatments that you have had good experience with knocking out brain mets? Drug combinations? Should I look for a second oppionion from another radiologist or is this pretty common?   We are happy with our oncologist (at an amazing cancer center John Stoddard in Des Moines, IA) but I'm wondering if there might be a better melanoma specialist or center we should look into.   Any advice would be great.  I'm curious about the cancer treatment centers of america but I'm a bit skeptical since I see so many commercials on tv.   Also,   I'm interested in any complementary or homeopathic therapies you might suggest. 


I know things are looking rough... and that I might be grasping but I have to believe that we can still fight this.



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Ginger8888's picture
Replies 2
Last reply 8/31/2014 - 9:47am
Replies by: Ginger8888, BrianP

Has anyone tried this?...I have been doing some reading on this in hoping it will be come legal in my state soon.I've read a lot of success stories..

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Annalive's picture
Replies 1
Last reply 8/30/2014 - 11:09pm
Replies by: RJoeyB


I am scheduled to do 3 fractions of Tomo Therapy totaling 15 Gy. for post surgical  residual tumor near L4-L5 left facet joint.  I guess the simple question is ,What type of radiation is delivered?  This may be a lame question but I can't find it onlie.  Is it a radioactive isotope?  A radio frequency?  I just want to understand. Doc not easy to access between visits.  This is my first time being treated with radiation.  Thanks, Ann


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Anonymous's picture
Replies 3
Last reply 9/1/2014 - 4:13pm
Replies by: Becky, Anonymous, Janner

I just noticed a dark brown "freckle" on the gum above my front tooth. I don't know how long it has been there, because it can only be seen if I lift my upper lip to expose the gum.  I only noticed it yesterday when I was checking to see if I had food in my teeth. It does not hurt. It does not blanch. The skin does not appear to be broken or damaged. I was diagnosed 8 years ago with SSM, Stage 1, Clark level 2, posterior upper arm. I doubt the two are related, but is it possible to have, at some point, SSM and oral melanoma? Also, can my dermatologist biopsy this? I wanted to post a pic of it, but I don't know how? I would appreciate any input you can give since this happens to be a holiday weekend. Thank you in advance. 

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Anonymous's picture
Replies 2
Last reply 9/2/2014 - 8:00am
Replies by: Anonymous, arthurjedi007

My mother has been diagnoes with melanoma recently. Can anyone advice on diet and lifestyle that can help in fighting this beast?

Stay blessed!

God bless you

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delora's picture
Replies 4
Last reply 8/31/2014 - 12:08pm
Replies by: BrianP, Brendan, Nal64

Hi All,

I am currently Stage IV in a clinical trial with Ippy and a clinical trial drug.  I love my Dr.  She is the absolute best.  However, the nurse in charge of my clinial trial is a disaster.  She has made some major mistakes, put in for incorrect blood tests, delayed my treatment on two occasions, sent me to the wrong Dr for my week off treatment bloodwork, and a few other things.

For my last two appointments, she has stayed in the room.  My "feeling" is that she is worried I will tell the Dr.  She apologizes over and over every time the Dr leaves the room.  At first is was no big deal, I just figured we all make mistakes, but too many apologies makes me feel really uncomfortable.  I am unsure of what to do.  I want the focus to be on treatment, not on complaints.  However, I am really uncomfortable with her and, honestly, I am very stressed when she stays in the room.


I just don't want to say something that could potentially upset my Dr or her.  I think the trial only lasts six more weeks.  Part of me just thinks I should ride it out.  

I know this isn't the typical stuff we talk about on here.  I just don't know what to do.  I don't usually have experiences like this.

Any thoughts or similar experiences?  From my understanding, she is the only person who works with folks in the clinical trials.  


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JerryfromFauq's picture
Replies 1
Last reply 8/30/2014 - 11:28am
Replies by: Resilient4Life

What is pharmacogenomics?
Pharmacogenomics is the study of how genes affect a person’s response to drugs. This relatively new field combines pharmacology (the science of drugs) and genomics (the study of genes and their functions) to develop effective, safe medications and doses that will be tailored to a person’s genetic makeup.
Many drugs that are currently available are “one size fits all,” but they don’t work the same way for everyone. It can be difficult to predict who will benefit from a medication, who will not respond at all, and who will experience negative side effects (called adverse drug reactions). Adverse drug reactions are a significant cause of hospitalizations and deaths in the United States. With the knowledge gained from the Human Genome Project, researchers are learning how inherited differences in genes affect the body’s response to medications. These genetic differences will be used to predict whether a medication will be effective for a particular person and to help prevent adverse drug reactions.
The field of pharmacogenomics is still in its infancy. Its use is currently quite limited, but new approaches are under study in clinical trials. In the future, pharmacogenomics will allow the development of tailored drugs to treat a wide range of health problems, including cardiovascular disease, Alzheimer disease, cancer, HIV/AIDS, and asthma.

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

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Mostly for Gsamsa and Brian P, as well as any of you who are interested: After we had talked about pneumonitis.... I was reading, then posting, an article that actually included some data about its occurrence with anti-PD1 therapy!  The article is a little older but does address some of the latest combo therapy.  And...because it is a compilation of data from a year breaks down the beginning results, with commentary re side effects, and some pretty cool, straight forward explanations of how it all works.

For what it's worth:

Wishing you all my best!  Celeste

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