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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rmclean306's picture
Replies 3
Last reply 4/13/2015 - 7:49am
Replies by: Marianne quinn, casagrayson, Anonymous

My doctor just told me that he suspects subungual melanoma on my left thumb. I go to a dermatologist next week. It's scary to think about. How do you post a picture for others to see?

 

Robyn

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Anonymous's picture
Replies 5
Last reply 4/11/2015 - 9:52pm
Replies by: Anonymous, dvd, Ajricc00, Jubes, sweetaugust

Hi, I just returned from my dermatologist's office where i had a growth on my upper thigh biopsied.

 

The background:  a few months ago I noticed a painless little bump that kind of looked like an ingrown hair or something on my upper thigh--but I tried popping, and nothing came out. In any case, I wasn't worried about melanoma bc I knew the ABCD's and it didn't follow that pattern. But this past week I noticed it was increasing in size quickly--so I did another google sweep and stumbled across nodular melanoma and--terrifyingly--my bump had these characteristics. I saw my dermatologist today hoping he would look and say "NBD"--but he was decidedly cautious in the way he spoke about it to me.

In a nutshell, he said it was either a hemangioma, or a type of melanoma that I cannot for the life of me remember what he called...something with an "a"--referring to the fact that it didn't have the melanin that makes things brown? Does anyone know?

He said it looked purple, which was promising--as most are brown or black--though that conflicts with what I've read about nodular melanoma.  He also said that he was happy that it bled when he biopsied it--but I have no idea how indicative that is.

That was most of the substance--the rest of the convo was him trying to walk a really fine line between comforting me and preparing me for a negative diagnosis.

Now I have one week of waiting...and I just wish I could find some positive stories about this rare type of melanoma...but I'm coming up short. Most just talk about how aggressive and deadly it is. Or find at least one bit of info about a hemangioma that looked like what i have--but nothing there either.

I have an 8 month old and I can't stop thinking about him growing up without a mother, and not getting to see him grow up. 

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/11/2015 - 9:40pm
Replies by: Squash
The Truth About Cancer - 48-Hour Replay Marathon is Happening NOW!
 
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Anonymous
Replies 10
Last reply 4/11/2015 - 4:58pm
Replies by: _Paul_, Anonymous, ldub, akls, Squash

I found this link and wondered what others thought of it. I went to U of M. It took me a total of 3 months to get my wide excision and node biopsy, then a partial node removal. I often wonder if surgical intervention quicker would have made a difference in the status of my node.  Of course, they said it wouldn't when I asked them.  Just seems like an extraordinary amount of time to wait when you are dealing with Melanoma.  Thoughts anyone?       http://www.dailykos.com/story/2015/04/08/1376427/-Yale-study-reveals-mel....    I am not on Medicare and have private insurance.    

 

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The treatment developed by Carl June that is mentioned in the article (and was featured in the last hour of the PBS special) will be tested in melanoma in the near future.

http://www.philly.com/philly/health/20150409_Comparing_immunotherapy_to_other_cancer_weapons.html

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ldub's picture
Replies 8
Last reply 4/10/2015 - 2:03pm
Replies by: ldub, Janner, Squash

I am having my WLE tomorrow on my left lateral calf for an in situ lesion that was approximately 5 mm.  I know generally what the procedure is and have read up on appropriate margins, shape of the excision,  etc. but am wanting to hear from those of you who have had these in the past  - about how long is the procedure, how large was your incision, did it hurt a lot?, do they just use a local, how long were you supposed to stay off your feet (if at all) and average recovery time - when could you exercise, take a long walk, run again?   I was thinking that I was supposed to take it easy for a couple of days and not exercise for about 2 weeks, but the dermatologists at my melanoma center have made it sound more painful with a longer recovery than I imagined.    So now I am a bit more anxious.  Thanks for any input. 

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RGal's picture
Replies 3
Last reply 4/10/2015 - 10:59am
Replies by: RGal, Ed Williams, Mat

My father has been on a study for only 6 wks.  PD-1 infusion every 2 wks + inhibitor.  He went today for scans which according to my mother "aren't good" so they are stopping this regimen and beginning something else in 3 wks.  Two questions, why wouldn't they give it more time and also, do they need to wait 3 wks for these drugs to be eliminated from his system.  I hate the fact that nothing will be done for so long.

Any advice would be most appreciated.  

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Anonymous's picture
Anonymous
Replies 7
Last reply 4/10/2015 - 9:58am
Replies by: Indiana82, jogo, Fen, yazziemac, dvd

Recently diagnosed (January 2015).  Tumor in parotid gland (salivary gland) turned out to be metastatic  melanoma. Had surgery to remove parotid gland (partial) and tumor (with clean margins).  No evidence of primary melanoma found (nothing on skin, eyes, throat, nose).  Clean brain MRI and body PET scans. NED. Going to Mayo next week for another opinion about further surgery and any possible adjuvent treatment.  This past week had a consult with a second ENT surgeon who wanted to remove 15-25 lymph nodes from the neck area near the original surgery site, but decided to wait on this after hearing my original ENT surgeon's thoughts on this.

Has anyone else had a melanoma in the parotid gland, and if so what has your treatment been?

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Joe.Pro's picture
Replies 5
Last reply 4/9/2015 - 10:34pm
Replies by: Anonymous, _Paul_, dentholla, arthurjedi007, tschmith

I'm new here - but how much do you guys know about this already?

http://m.ksl.com/index/story/sid/34059559?mobile_direct=y

 

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Jewel's picture
Replies 11
Last reply 4/9/2015 - 1:53pm

Hello there,

My husband managed to complete all 4 doses of Yervoy 1/19/2015 with very little side effects. Scans on 3/3/2015 showed NED. My question is slowly in the past month or so the itching/rash has become worse and worse, to the point that his sleep has gotten very disrupted, I plan on calling our Oncologist Monday but I was just wondering if anybody might have some advise. He has taken Benadral,  used all the creams, Sarna, Gold Bond Medicated Etc, nothing really touches it. I know they might put him on a tropical/oral cortiosteroids. Poor guy has had enought, thankfully during the day doesn't bother him nearly as much. Any thoughts?

Thanks,

Jewel

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Hi everyone!

I want to share with you the good news that the Melanoma Reseearch Foundation recently hired an online community coordinator. His name is Adam Smartt (asmartt@melanoma.org) and he will be driving the MRF's online awareness efforts, including but not limited to social media, blog, chatrooms/forums and monitoring for/removing spam on MPIP. Please don't hesitate to reach out to Adam about any issues regarding the MPIP bulletin board, especially as it pertains to functionality and spam. We're so pleased to have Adam as part of the team!

You can learn more about Adam by reading his bio on the MRF staff page. Thanks!
 

- Lauren, MRF

LSmithDyer@melanoma.org

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Replies by: GAngel, JimsWife, rosa1, Patina, Issy

Hi y'all, I've been browsing this board for a few months and am so thankful it exists. Hoping you guys can weigh in and lift my spirits.
A little background: My husband Jim is 34, Army National Guard veteran - 14 years of service, 2 tours overseas to Afghanistan and Iraq. He was diagnosed on 12/23/14 as stage IV with multiple brain, lungs, and bone mets (in his lower spine, left hip and femur) BRAF and PTEN positive. Primary diagnosis was a mole on his right temple in 2007, that was removed.
He had SRS in January to 11 lesions in his brain, then another MRI revealed there were 20+, so he had whole brain radiation in February. He also took Temodar during this time. After a couple weeks break, he started the braf/mek combo on 3/2. The side effects were mild until recently. He now has a nightly low fever, chills, headache, loss of appetite and fatigue. It seems to be getting worse and I'm so worried. Smoking pot doesn't help the appetite anymore and he just started cannabis oil 5 days ago.
I should add we've only been married 19 months and I'm 25 weeks pregnant with our first child. This has been so hard to deal with but lately I've been having a really hard time, especially now that I can tell he feels so bad. I hate this disease so much and what it's doing to him and our life. Any positivity would be appreciated :)

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Chantel's picture
Replies 2
Last reply 4/7/2015 - 11:43pm
Replies by: arthurjedi007, Anonymous

My father was just diagnosed with recal spindle cell melanoma stage 2. He is undergoing surgery in one week - colectomy and removal of rectum with a stoma and bag placement (colostomy). From what I have read even with Surgey this is a bad tumor.

Are there any other treatments he should be seeking after surgery- chemo, radiation, immunotherapy or gene therapy available? Any advice on this tumor, treatment and prognosis is appreciated

thank you. 

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Anonymous's picture
Replies 9
Last reply 4/7/2015 - 10:19pm
Replies by: bonusfries, _Paul_, Anonymous, kathycmc, Janner, Jubes, Mat

I am 35 years old male, who was recently diagnosed with Melanoma in Situ in February 6th 2015. 

I had my surgery done, and got my final results. All margins are clear. Even though that my doctors told me that it was just on the surface of the skin, I still have fear and questions. In 2014 I helped my mother to fight breast cancer, and year later I have been diagnosed with my Cancer. I hate that!

Thanks?

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