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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courtney2015's picture
Replies 1
Last reply 9/9/2015 - 3:08pm
Replies by: Kim K

Hi Everyone,

I posted previously about a strange new mark growing on the underside of my big toe. Im still waiting to hear back from the specialists in the city.

I have another mole thats concerning me. I actually showed the GP this mole when I first showed her my toe. She said it was benign just by looking at it. It was slighly raised, a mix of dark browns and what looks like abit of red (Its hard for me to get a good look at, its at the top of my arm, sort of towards the back of it) and its about 6mm and abit asymmetrical, A few days later I randomly thought to have a look at it and the entire surface of the mole had crusted over and was like peeling? I pulled the top off and it had spots of pigment from the mole. it was now completely flat. This rang alarm bells with me, as this is exactly how my original melanoma behaved right before diagnosis. I rang the GP straight away and saw her the next day. She still mantained that it looked benign but because it had peeled and melanoma is unpredictable, she wanted to do an excisional biopsy. Unfortunately my appointment has been cancelled a few times, and I may get seen to next week, Today the same mole had slightly risen up again and the surface peeled again! Argh! I cant find much info on the internet but I was wondering:

Has anyone had something simliar? 

Do benign moles peel at all? 

Thankyou so much in advance

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/9/2015 - 5:21pm
Replies by: casagrayson, fgevans, Anonymous

First thing is that i am a worrier in general and always think the worse.

about  1 /12 years ago i noticed on my lower back (just below the waistband a brown round lump on my side) - i was in a mirror changing and had not noticed it before. I showed it to my wife who said thats its been there a long time .

 

its a very round brown raised circle around 7 mm in diamter and around 1mm raised . it is rough to tough and not smooth.

 

Since being aware of it i have kept my eye on it and it has remained the same througout the 1  1/2 years.

 

it does not itch and does not bleed.

 

I also have another smaller light brown mole on the other side.

 

basically it does not look like any examples of melanoma i have seen online 

 

should i be concerned.

 

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aquamak's picture
Replies 4
Last reply 9/11/2015 - 1:19am

Had a CT scan 2 weeks ago and a follow-up abdominal MRI last week.  All clear!

Mela-No-More

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evieg's picture
Replies 4
Last reply 9/9/2015 - 8:11am
Replies by: evieg, jbronicki, aquamak

Can anyone please help and interpret what this means form the CT report..."Heterogeneity is suggested within the dome of the liver though no discrete mass is seen with certainty at this time".... So there is possibly something there??  Another place on the report..."the liver demonstrates mild heterogeneity....this is especially true throughout the dome on images 5-8....no distinct lesion elsewhere is noted"

Thoughts?

Thank you in advance!!

 

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Millykamp's picture
Replies 6
Last reply 9/16/2015 - 11:58am

Hello everyone

 

well it's a week before my WIde excisions and SLNB...  I don't do well with  pain and been told from a few it's hurts, it's burns or it's nothing...    So  I am curious from you guys that had it, what was it like?  And what will I expect?? 

Melissa 

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/10/2015 - 6:52am
Replies by: Anonymous, kathycmc, stars, CHD

Hi all, I am 36 male who recently was diagnosed with melanoma in situ on my back. I had a surgery and the margins were clear. My dermatologist says I need to see her on regular basis for skin check ups. Please advise. Thank you. Eric

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Richard_K's picture
Replies 3
Last reply 9/11/2015 - 1:31am
Replies by: DZnDef, Bubbles, Scooby123

I just got back from seeing Dr. “P” at NYU for a 12 week follow-up.  This visit included the review of CT scans (now taken every 24 weeks) as well as normal vitals and blood work.  Everything was fine and I continue on vemurafenib; today marks 5 ½ years on this drug!! 

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/8/2015 - 3:17pm
Replies by: CHD

Hi everyone,

I came back from holiday about a month ago and notice a light brown patch on my foot - it didn't look bad or anything, but after I started Googling stuff melanoma came up as a possibility. I went to my doctor and he thought it was nothing, he said come back in two weeks if it hasnt gone. 

Sure enough, it hadn't disappeared. I went back to him, he looked through a hand microscrope with a large light and said he wasn't sure what it was and has referred me to a dermotoligst, who I'll be seeing soon.

However, I'm just really, really worried! I started googling things (which I know was stupid but I get nervous) and I'm just scared...

The spot went from a light brown to a darker brown, and now it looks like its fading a little bit. Could this be something else? 

Thanks

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Anonymous's picture
Anonymous
Replies 5
Last reply 9/9/2015 - 8:25am
Replies by: pookerpb, momof4boys, Anonymous, beans920

 A year ago, I had a severely dysplastic mole removed from my calf by exicsion.  The excision didn't heal properly, so when they took the stitches out the whole thing opened up, and took several months to heal.  While it finally did heal, I've noticed some dark purple spots in the scar.  One is toward the bottom and is flat, and the other is at the top and raised.  I'm worried that i's a recurrence, even though they said it came back with clear margins.  While the spots have been dark since healing, the raised spot on top has recently looked blue.

 

The blueish color seemed new, and after I carefully picked at it with a pin, the blue seemed to fade.  Now a week later, almost the same exact thing.  I noticed sort of a blue streak, and after messing with it a bit, it's gone back to looking purple.  Has anyone had anything similar to this?  Could it just be hard scar tissue, perhaps built up over a stitch?  If the mole has grown back, why hasn't it come to the very top, but seem to be staying right under the top layer of skin?  Any comments are appreciated!

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/9/2015 - 10:05pm

I recently had a PET scan that welcomed me to the stage 4 club.

I have a small met on L2 and one small met 5mm on the liver and some lymph node involvement in the groin.

I met the oncologist today and he wants to start me on Keytruda next week.

He told me that even thou the statistics show only 30 percent response that this is for shrinkage and that he is getting a lot of people that remain stable whilst on Keytruda and that being healthy to start with and with a low tumour burder is a big advantage.

He said if i dont respond he will put me on Opidivo and/or Ipi.

Keytruda is only 30 odd dollars per infusion.

Hey says that I am lucky because it was only just recently approved here in Australia.

I am a bit worried about the side effects but he seemed to downplay them saying most people dont seen to have too many issues with the drugs.

Any tips from people out there pre infusion would be appreciated?

 

 

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/8/2015 - 10:30pm
Replies by: CHD

I have a mole on my arm that has been there as long as I can remember. The Dr measures it & checks it good when I am there which is now every 3 months. I'm worried it could become melanoma even if not making changes. I plan to have a biopsy done but does anyone have experience with this

Melissa Riley

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mkirkland's picture
Replies 16
Last reply 9/16/2015 - 4:33pm

Hi - I have stage 3 nodular melanoma. I am scheduled for lymph node dissection of the right groin this Friday along with another wide excision in my foot. Any tips on an easier recovery? Pretty nervous about the pain and down time.

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akamo's picture
Replies 4
Last reply 9/8/2015 - 2:51pm
Replies by: DZnDef, ET-SF, Anonymous, Colleen66

Hi. I am wondering what others thought about drugs that suppress the immune system? My husband has psoriatic arthritis (and psoriasis) and was put on low dose prednisone because he was in so much pain that he couldn't function in everyday life. Within about 4 months of starting the prednisone he developed melanoma. He has since went off of it because we thought it would slow his recovery (stage 1A with a WLE). As of now, he is back to being in excruciating pain. Is there anyone in this group who has arthritis and takes prednisone or methotrexate? I have read that they both can cause melanoma so imagine he would have a greater chance to get it again. Thoughts? Thanks-Robin

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stars's picture
Replies 6
Last reply 9/9/2015 - 2:35am

Hi - this is kind of a trivial post in the scheme of things but I wonder if others can relate. Since March I've had 3 WLEs, so three big scars - one is pretty much hidden in my normal clothing (upper thigh), but the other two would be quite visible if I wore, for example, a short sleeved shirt.  When I had them done, just within the last few months, I bought some new tops that cover them (elbow area and upper chest). Its becoming quite an effort to keep them covered as the weather is getting warmer here, but I'm intensely uncomfortable showing them or having to tell my story to well-meaning colleagues who ask. I'm only just coming to terms to what happened to me (3 synchronous primary melanomas) and I'm not ready to share. That, and I find them ugly. Does anyone else have any thoughts on this? I'm in a very public job and I'm sure I would get either stares or queries from well-meaning people, I"m just not ready for that.

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Rita and Charles's picture
Replies 5
Last reply 9/7/2015 - 7:24pm
Replies by: Anonymous, Wheels1994, Rita and Charles, mrsaxde

I think that I must be crazy asking this question...I'm super straight, but my husband has chronic pain  from broken back, leg, etc - struffling for yearsm and it seems like the BRAF combo had amplified it.  He can no longer walk our dog and we are so happy that the combo is shrinking the tumors but life is still filled with pain. 

 

Thoughts??

Rita

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