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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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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Aundrea's picture
Replies 1
Last reply 4/7/2015 - 8:03pm
Replies by: Julie in SoCal

Not sure if yall can pull it up or not but my husband and I caught a series of 3 shows all about cancer.  Melenoma was on one  of them and it talked about the drugs alot of you alreay take and the drug my husband is fixing to recieve.  I hope yall can watch it online.  Very informative.  This really helped us understand better and it gives you some hope.  

 

The website is pbs.org and look for these 3 videos.  

Cancer: The Empores of All Maladies Majic Bullets 

The Blind man and the Elephant 

Finding the achillies heel 

 

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catrob2015's picture
Replies 3
Last reply 4/7/2015 - 6:41pm
Replies by: JulieW, Janner, Anonymous

Hi all,

Just looking for abit of advice/reassurance as my husband is about 1.5 years from his diagnosis of stage 1b  of superficial spreading melanoma, it was 1.33 breslow deep. p2ta 

I have obviousley been worried throughout but for some reason i am just so worked up and obsessing about it at the moment, scared beyond belief that it will come back for my husband. My husband is very very moley with big moles and seems to be new ones appearing all the time, little ones, just feel really scared that i am going to miss something or his dr will miss something. We are in the UK so i worry the treatment isn't as thorough as it might be in the U.S and again that it will be missed, particurley when there are so many moles to look at. 

I am finding myself constantly searching/reading re stage 1b melanoma and making me incredibly anxious and depressed. We have a young 3 year old autistic son and i am 5 months pregnant and scared gonna lose my husband and what will i do and that it is a ticking time bomb :'( 

How likely is it to come back?? Is it more likely to show in skin or lymph nodes? And any other stage 1bers that have gone on to be ok, i worry as he has so many moles it is inevitable it will come back :(?

Sorry for the long post and rant. Just really to talk to people who understand, i know there are people a lot worse off and very grateful for where we are now but still can't stop myself from worrying about it.

 

Thank you 

 

Catherine

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Mat's picture
Replies 6
Last reply 4/6/2015 - 10:12pm

Hopefully I didn't mess-up the link below.  I'm not aware of a better source of "one stop" information on melanoma than Celeste's blog.  In her latest post, she summarizes her story--and, in doing so, provides hope and guidance to all of us.  Good reading for a holiday weekend.

http://chaoticallypreciselifeloveandmelanoma.blogspot.com

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csellers23's picture
Replies 14
Last reply 4/6/2015 - 4:40pm

I don't know what to do. The last 3 day we have been to the ER 4 times. High temp up to 104. They just send us home. He was seeing things and wasn't making any sense. They said what do you want us to do.. I got his temp down. But now it's like 83.9 to 94.9. Buy has been in his right mind. The while watching the UK game tonight. He started stuttering hid words and the left side of his lip went up. I called 911 they came took his bp and all and told me it sounds like he has a tumor on the part of his brain that controls his temp. And the pressure prolly caused it all. I called his doc and ask about hospices and he said he don't think we need it yet that it could be the keytruda killing the cancer. But it's like every day I'm calling 911 and it's getting old to them. But what am I to do. I weigh 90 I can't make him do anything. I have 0 help and 3 kids that I am so missing out on. And I'm so afraid he will have a seizure and come after me, or I will walk in one day and find him..... I don't know doing something that will scare the shit out of me. I give him His meds over 40 of them all at different times some 2 4 8 12 hours and others as needed. I can't eat. I don't know if I'm sick or just scared and my nerves tour up. I don't know where to turn or what to do. Any advice would be great Thank you. Ps he has tumors in brain bone lung soft skin tissue.

Crystale

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