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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theresar's picture
Replies 2
Last reply 9/2/2014 - 4:55pm
Replies by: RJoeyB, BrianP

I frequently read on these posts people talking about their tumor burden or tumor load. What exactly does that mean? Does it have have anything to do with the LDH factor or some other lab tests or just the number of tumors one has.

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mwcollins's picture
Replies 2
Last reply 9/2/2014 - 4:51pm
Replies by: BrianP, RJoeyB

Hi all! Kevin & I have been quiet for a while since his last surgery and scans. Stage 4, but NED. Lately he has been having some mild discomfort in his belly on the opposite side of where he had his small bowel resection. He thought he might have tweeked it at the gym, but it just won't go away. As I know you are all keenly aware of being hyper sensitive to anything out of the ordinary, he is at the doctors. I am so praying for it to be nothing, but can't rule anything out either. Please keep Kevin in your thoughts and prayers. Thanks!

Megan

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Anonymous's picture
Anonymous
Replies 5
Last reply 9/2/2014 - 3:38pm
Replies by: Anonymous, Janner

Hi, everyone.

My husband, age 72, had a melanoma removed in May with wide excision. At the time, the plastic surgeon said that for the most part the margins were clear but one cell remained.

Recently, small, pink bumps have been coming up on his scalp. He says they hurt when he presses on them. 

He is supposed to have an appointment soon with his dermatologist. I am going to go into the appointment with him because he doesn't hear well and I have some questions.

We haven't been given a pathology report - is that typical? So I know nothing other than that my husband said the dermotologist told him this was the 'best' kind (husband's interpretation) to have. However, the plastic surgeon, whom my husband knew professionally, asked him, "You do understand that this is cancer?" and told him it was malignant melanoma.

Any thoughts are most welcome!

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Anonymous's picture
Replies 7
Last reply 9/2/2014 - 3:18pm

My husband will start pembrolizumab next week, after having had Yervoy with no results, and disease progression during the Yervoy treatment period.  What I'm looking for is some GOOD news from those folks who have had (blessedly) good results with the pembrolizumab.  Let me hear it!

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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?

Thanks,
Allison

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awillett1991's picture
Replies 15
Last reply 9/2/2014 - 12:21pm

I started dabrafenib about a month ago, then added the Mekinist 2 weeks ago. I was fine, only slight side effects, on the dab, but the MEK has reduced my quality of life to 0. Either fever or chills, cannot get out of bed, Aleve & Tylenol don't help. I am off it all for the weekend as my Dr is out of town.

Thanks,
Amy

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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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Anonymous's picture
Anonymous
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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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.

Thanks,

Allison 

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casagrayson's picture
Replies 2
Last reply 9/1/2014 - 6:58pm
Replies by: jahendry12, Fen

One of my dear friends has been battling Stage IV melanoma since March 2013.  As so many others, he had a melanoma removed years ago and then completely forgot about it.  He went to the ER last March for kidney stones, and the scans picked up tumors in his abdomen.  He tried everything,  starting with biochemo at MDA and finally got on the Anti-PD1 trial.  Unfortunately, the melanoma was just too aggressive.  After three brain surgeries in less than four months, his family chose to move him to hospice ten days ago.  He lost his battle early this morning.

RIP, Trey.  

Strength and Courage,

Susan

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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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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 ago....it 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:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/08/combination-therapies-for-melanoma.html

Wishing you all my best!  Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

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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.  

Delora

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

Hello,

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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Brigitte's picture
Replies 10
Last reply 8/30/2014 - 10:31pm

I had a conseratvie excision on my back. Yesterday I got the stiches out, and was told I didn't have to do any wound care. The area still feels raw and I was wondering if there is anything I can do to help it heal faster? I dont really want to put valsine on it. 

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