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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Rawlins Mom's picture
Replies 5
Last reply 7/10/2015 - 9:55pm

Several week lurker, first time poster

My mother was diagnosed with mucosal melanoma (lady parts...not fun!) at the end of May.  She had surgery to remove the main lesion, and the PET scan showed several mets to the liver, lymph nodes, and one to the brain.  She had specific radiation on the brain tumor (not sure the exact procedure), finishes her daily targeted radiation today (4 weeks total I believe), and started on Keytruda 2 weeks ago.  Side effects so far are actually OK.  Some fatigue, and an imodium here and there, but overall OK.  

I really appreciate all the posts here, both the uplifting ones and not so much also.  Puts things into perspective, and now I know that there are many options down the line.  

 

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Thandster's picture
Replies 9
Last reply 7/14/2015 - 11:37am

I have been on BRAF/MEK with mixed success. It has helped many things, but my liver has gotten worse. My Onc. Is VERY concerned that I dont have much time left and so she decided today to take me off the MEK and use a combo of Dabrafenib and Nivolumab. I go first thing tomorrow morning for my first infusion of Nivolumab. Has anyone else used these two together? Any info or thoughts appreciated.

Thank you,

Thandster

(1 Peter 5:7 NLT). Give all your worries and cares to God, for he cares about you

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Anonymous's picture
Anonymous
Replies 4
Last reply 7/12/2015 - 6:50pm
Replies by: _Paul_, Jenncat0402, Janner, Anonymous

I have Melanoma on my anterior deltoid ( front of my shoulder) and will be having an excision about 6 " in length. Is there any advantage of having a plastic surgeon perform this surgery over my dermotologist? 

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democat's picture
Replies 9
Last reply 7/10/2015 - 10:34pm
Replies by: Anonymous, BrianP, jbronicki, Colleen66, SABKLYN, Mom2Addy

I've been waiting days. Kaiser SoCal usually takes a day or two or three, but are now making me wait over a week. Do they not understand that this is torture? Does anyone else have these issues?

 

Roxanne

 

 

Roxanne

Stage IIIa/IIIb

since 1/2013

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/9/2015 - 10:33pm
Replies by: arthurjedi007

Has anyone heard of a condition where Yervoy (ipilimumab) causes the bone marrow to stop making white blood cells?  I need some quick help ... 

 

Thanks in advance

Kim

 

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sassega's picture
Replies 1
Last reply 7/9/2015 - 12:51pm
Replies by: Janner

Hello, I'm a 65 year old female and in the past year noticed that several of my toenails developed black lines of various thickness and darkness of color.   They cover most of the whole toe...the right second toe, and fourth toe on left side, with a new single line on the second toe, left side.   I thought these were the result of getting ugly, old lady toes.  But a friend got melanoma on her foot and I decided to look up toenail melanoma and saw some familiar pictures.  It seems to me, though, that there would be a spot on the skin, under the toe and I don't see that.   I clipped the nail and the toenail clipping had the black line througth it.  The nail just keeps growing with the same discoloration all through it.   So would it just be a discolored, ugly old lady toenail since I don't see a spot on the skin?

 

BTW, I am Native American and have a Nevus of Ota on my face, and doesn't involve the eye.   I also have sundanced about eight years and have been a little paranoid about sunburned feet all those years.

 

Should I be concerned?

 

Thank you,

Glenda

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Anonymous's picture
Anonymous
Replies 9
Last reply 7/10/2015 - 3:22pm

My father recently was diagnosed with metastatic melanoma stage 4.  It was discovered during a routine biopsy on his head.  He has had a pet scan and it shows no attachment of any kind to his body.  How is it possible to be at stage 4 but not have anything showing in the lymph nodes, organs, etc.?  He is now recieving 6 weeks of radiation on his head.  He was told this was to hopefuly kill anymore spots.  Again I am confused.  To my understanding Metastatic melanoma cannot be cured.  What am I missing? 

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Rita and Charles's picture
Replies 8
Last reply 7/8/2015 - 10:00pm

Wish us luck - I have a good feeling that he will be good. 

Rita

Rita

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pookerpb's picture
Replies 8
Last reply 7/9/2015 - 7:25pm
Replies by: Anonymous, pookerpb, jamieth29

I am new to this forum and am the wife of a stage IV melanoma cancer patient. Husband was first in 2008 when husband was 37. He had a nodule (>4mm) removed from calf. lymph nodes tested negative. Was on interpheron for one year.

in 2014 it came back in small intestine. Had resectioni done and on IPI/Interpheron trial for 8 mos until some of the lymph node markers progressed.

Jan 2015 started the Keytruda/Peg Interpheron trial. Showed shrinkage with first 12 week scan, and then last week scans showed some stability with very minimal growth in others.

Had to come off treatment due to Pneumonitis. On very hight dose prednisone for a few weeks and hopefully back into study in 6 weeks (will have missed 2 doses).

We live in Northwestern PA and see Dr. Kirkwood in Pittsburgh who is a melanoma specialist. we have 2 daughters age 13 and 15.

The unfortunate thing is that my husband has a concerete business which is very labor intensive. I dont know how he goes to work each day and I hate seeing him suffering from his job (very physical).

Just wanted to say hello....

 

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tangerine1953's picture
Replies 2
Last reply 7/8/2015 - 7:48am
Replies by: jamieth29, Anonymous

Hi all.

The reason i post is because of a mole i have on my arm. A couple of weeks ago i noticed a mole on my arm had raised slightly, the thing that scared me the most is that i have just had a holiday in the sun. The mole hasnt grown in size apart from raising slightly, it isnt itchty, painful or bleeding either. The mole is about 2 mm in diameter, i have been to the doctors and he quickly dismissed it as being nothing. I noticed like a black spot inside the mole, this has now risen to the surface and formed a scab on top of the mole and the colour of the mole seems to have changed to like a flesh colour. Do i need to go back to the doctors or could it just be irritated or something??

 

Thanks in advance for any advice

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Bubbles's picture
Replies 10
Last reply 7/9/2015 - 6:41pm

How do you be, my friend?!!!  Wishing you well.  Hope you are at least a bit better.  c

chaoticallypreciselifeloveandmelanoma.blogspot.com

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Anonymous's picture
Anonymous
Replies 3
Last reply 7/7/2015 - 11:26pm
Replies by: Anonymous, Janner, Colleen66

I have searched high and low for answers to my questions, but kind of get run around answers. Everyone here seems very educated on the topic, so I thought I would give it a shot here. 

I have never watched my moles....didn't ever think about melanoma. Then the doctor removed two that looked odd. The first pathologist could not come up with a clear determination on classification, so it was sent to a second pathologist. This pathologist sent report saying one was severely atypical and the other was moderately to severely atypical. Neither had clear margins so I am having both excised to get clear margins. When I went to dermatologist for first time, she saw another suspicious one, and it came back moderate but had clear margins. 

My question is...I didn't realize these were odd, so never watched for change. I have several others which are odd looking now that I have done a body check. Since I have no idea which have changed, and which have always looked weird, and all three have come back atypical, should I be concerned that there could be one that is melanoma? I'm not sure what to do now. I don't want to wait around and have the bad one missed, and I cent find answers on what I should do. 

 

Thanks!!

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dfeng's picture
Replies 4
Last reply 7/10/2015 - 10:03pm
Replies by: tschmith, Bubbles, jamieth29, Mat

In march I was in severe pain in abdomen, during the surgery a 2cm tumor was found and removed. It turns out to be metastatic melanoma, stage IV. After three months, last week a CAT scan shows 6 more around liver size from 2cm to 3cm. It seems that I am really in bad situation.

 

I am going to do brain scan and chest scan again this Thursday. Since three month ago everything shows clear but now, anything could happen.

 

Talked to my doctor in MSKCC, I am going to start a clinic trial from next Thursday. I will never give up and definitely fight to the end of world.

I will try to keep this post updated.

D. Feng

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Anonymous's picture
Anonymous
Replies 15
Last reply 7/9/2015 - 1:17pm
Replies by: Anonymous

Does anyone know whether a 2 x 3 cm superficial spreading melanoma would show up on a PET CT or plain CT? 

I always think of these questions right after appointments, with another 3 months before I go back in.

My last PET CT was clear, but I got to wondering:  If superficial spreading melanoma spread internally, how big would it have to be to show up on PET?  Unless it took a more nodular form, it seems like it could grow for awhile before being detectable. 

Would it even show up at all on a regular CT scan? 

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uccio2014's picture
Replies 23
Last reply 7/10/2015 - 5:21am

TY

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