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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JoshF's picture
Replies 19
Last reply 4/16/2015 - 5:05pm

Ive got CT chest/neck today. Not feeling as confident about scans in past after 3rd surgery due to recurrence in cheek after combo of ipi and il-2. Send good vibes...I've got a major case of scanxiety!!!

Josh

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

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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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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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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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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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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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Chris in Minnesota's picture
Replies 7
Last reply 4/15/2015 - 12:04am
Replies by: Chris in Minnesota, Toby0987, Bubbles, Anonymous

Here is a quick story of my melanoma.  I had a 8cm tumor in my left axilla that was unresectable due to it involving a major vein. My melanoma oncologist then started chemo that included avastin, abraxane, and carboplatin in hopes to shrink it enough to shrink off the vein and surgically remove it.  It worked and within 4 months of starting chemo I was being operated on.  They did a CLND of my left axilla. They removed the mass and the pathology of the mass showed no viable tumor but "many" of the 21 lymph nodes showing "treatment effect".  The doctor said that meant it appears that many were once infected with melanoma but the chemo showed a complete response.  That surgery was in August 2013.  In October 2015 I had a round of radiation in that area and have been on GM-CSF ever since then.  I have been having clean scans since as well.  My question is this.  Has anyone very had a "complete response" with traditional chemo like this and did they ever have a recurrence?   I have my scans coming up next weeks and am a little worried this time as I've had a cough for the last couple months that won't go away

thanks

Chris

 

 

 

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Anonymous's picture
Replies 7
Last reply 4/20/2015 - 12:59pm

For those with Brain mets, how do you deal with them?  Are any of the therapies that you are on crossing the blood brain barrier?  Do you get yours radiated as they pop up?  And does it work?

My dad has had 3 brain mets to date, not counting the new one found today.  2 were resected via a craniotomy and then radiated.  The last one was radiated.  All 3 were totally gone for almost the past year.  Then scans today revealed another one popping up (only about 1cm).  They feel that they can radiate it easy enough, but I'm just scared of what is next.  There are clearly cells in his brain with melanoma, so this could happen again at any time.  What is working to rid the brain of melanoma, other than surgery and radiation?

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G-Samsa's picture
Replies 3
Last reply 4/6/2015 - 2:14pm
Replies by: Mat, G-Samsa, Ed Williams

Does anyone have the latest on the PDL1 (any updates on effectiveness or its ETA)?  In all the fanfare regarding approval of the anti PD-1 drugs, I've lost sight of the PDL-1, which was somewhat behind in the trials but in the same heat.   As I recall, the PD L-1 sets the blockade at a different place than the anti PD1 that in theory might be even more effective and have less side effects.  There were a couple of firms, including AstraZenica, that were racing to bring these to market.  Don't want to appear greedy, but it seems, many could use another option.

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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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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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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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Anonymous's picture
Anonymous
Replies 3
Last reply 4/5/2015 - 6:13pm

I'm just hoping someone can help me understand the difference between BRAF positive and negative in terms of treatment possibilities and outcomes.  45 years old and just diagnosed with stage 3/c-BRAF neg nodular melanoma on the bridge of my nose.  They are suggesting a radical lymph node dissection and then radiation once I have healed from surgery.

Any thoughts or suggestions?

Thank you all for your help.  Not sure what to think.

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