MPIP: Melanoma Patients Information Page

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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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davekarrie's picture
Replies 15
Last reply 11/14/2010 - 2:49pm

My name is Dave, I am very healthy at 36, and I was diagnosed with melanoma yesterday after having what I thought was an innocent large mole removed.  The dr. said it was stage 4, but after reading I am hoping he meant thickness 4.  He said there were 5 stages, but he wasn't too confident.  I am going to meet with a surgeon Thursday and sounds like they want to take a larger area around the mole and test lymph nodes. Very scary for sure, and my world is now upside down.  any info would help.  I will call and get my biopsy report so I can look at thickness etc.

Live life to the fullest and enjoy each day! #noonefightsalone

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naty's picture
Replies 3
Last reply 11/12/2010 - 10:22pm

I've posted a few questions a wk or so ago.  We finally got the insurance to ok a consult, what do I need to ask/demand for treatment at MD Andersson?  My ftr has brain, lung, spleen, and liver mets.  He finished his WBRT on Monday.  I did ask his current oncologist to test for BRAF and he is positive, but I do not believe any other testing has occurred.   Thanks-I want to make the most of this visit!!!  Get him on a trial and get some quality of life.

Anyone here have surgery for brain mets?  No option given here currently (just in case no response to radiation).  

Thinking for him (IF he qualifies) the PLX4032 study vs IPI.   Or will they be big advocates and informative?  here his dr knows nothing other then WBRT and temedor.  

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dian in spokane's picture
Replies 9
Last reply 11/13/2010 - 9:34pm

For those following my little clinical trial, I figure it's time for an update. I had my 7th shot on Wednesday. They rotate these shots between my two thighs and my right arm, my left arm is a 'no-stick' arm. So far, my most consistant side effect to my vaccine has been a headache, which I did NOT have this time. My site reactions have consistantly gotten worse with each shot, and the reaction on my arm this time was pretty fast and continued to get worse till about this morning, but is much better tonight.

This month's reaction has given me a new empathy for those who suffer from lymphadema. My arm was swollen from shoulder to below my elbow. Last night was fairly painful, with the swelling around my elbow giving me the most problems, making it very difficult to bend my arm without pain. I'm still swollen tonight, but it's not painful anymore, and I think the itching has stopped.

I still feel like the side effects of this trial are very mild, especially when compared with other treatments and trials.

Hard to believe but I only have ONE shot left. I go back for skin tests and shots next month from the 8th the the 10th and then I am done with all of these trips to California. I feel very confident about making it through the trial without any recurrences.

This month it's been 2 yrs since I advanced to stage IV and, needless to say, I am thrilled to still be NED. I was NED for 11 months before starting the vaccine, so I guess there will never be any way to know if my continued good status is a result of the trial, or just my own good luck

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kellie1979's picture
Replies 10
Last reply 11/16/2010 - 7:06am

I posted earlier this week that I had not got my pathology reports back yet from the doctor and was afraid of the unknown.  Well I got the phone call today at work that I do have Melanoma.  They want to schedule for me to have surgery to remove the area on my back, and to have tests done to assure that it hasn't spread.  I am going to go to a different doctor, I called them today and they said once they recieve the pathology from my current doctor then they will call me next week to schedule my surgery.  I still don't know the depth or anything, my doctors office didn't even know.  The pathologist called them and told them that it is Melanoma so that they could call me and let me know before the weekend.  Any advice on how to get through this from here would be great.  I am trying not to worry and hoping that it hasn't spread but every time I look at other moles that have changed recently I just worry more.  The current doctor said I need to have a chest x-ray is this standard procedure after being diagnosed?

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Carrie's picture
Replies 8
Last reply 11/17/2010 - 9:45am

It's been a while since I have posted on here.  Here is a little background on my family...My mom was diagnosed with MM 3 1/2 years ago with four primary melanomas (deepest one had her staged at IIC).  She moved to Stage IIIB after several intransit mets were removed near the site of one of her primaries.  She has been NED for 2 1/2 years and is doing great!  Six months after my mom's originial MM diagnosis, my sister was diagnosed with MM with two primaries.  Fortunately, she is staged at IA.  She has been NED since her diagnosis.  Doctors have suggested there is a good possibility of our family having the familial atypical multiple mole melanoma syndrome.  We have not done genetic testing.

With that being said, I have been closely monitored by my dermatologist twice a year for skin checks.  I have a number of biopsies done with 3-4 moles being mildly to moderately atypical.  I just recently had a mole removed from my upper chest area.  My derm called me today with the results.  That mole was moderately atypical, however, the mole also had some characteristics that melanomas tend to have.  She started telling me what those characteristics were, but she immediately lost me on that.  On Monday, I'm going to get her to fax me a copy of the path report.  The following week, I'm going for a re-excision. 

I was wondering, is this normal?  She said none of my other moles that were atypical had these characteristics.  Should I request to have another pathologist look at the biopsy?  I have always thought that an atypical mole was atypical and melanoma was melanoma.  She has really confused me!  Any advice would be appreciated!



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emilypen's picture
Replies 7
Last reply 11/12/2010 - 8:21pm

Normally when my cell phone rings at 8:15am in the morning, I expect to hear not so good news as my family and friends know we're not morning people.

But today it was my husbands oncologist, calling to tell us that they got all the final measurements from the latest CT scan and his tumours have shrunk by 12%, after only 7 weeks on the study drugs.


Earlier this week we were told there had been no change.... which was great as well as his disease had been really aggressive. So this was just icing on the cake.

Don't usually like to start my day crying but today they were happy tears.

Have a great weekend all.



Husband Stage IV, bone & soft tissue mets

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Last night, pathology confirmed that the lymph node removed from my neck Monday tested positive for melanoma (unknown primary).  All other pathology and my PET-CT scan are clean.

I will contact an oncologist today, but from everything I read and what my doctor says, my next step is a left posterior neck lymphadenectomy.  My doctor suggested that I would be "knocked on my back" for about a week with one more week recovery before I could return to work and activities of daily living.  I do better when I know what to anticipate.  Please help me.

I'm sure some of you have had this procedure.  How did it go for you?  What was recovery like? How long did it take to get back to a "normal" daily routine, and what was different when you did so?   What surprised you about the process?  What helped you get through it?

Thanks for your help.  I've been reading this board since Monday, and it's a wonderful community.

Stay strong, everyone.

Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill It ain't over 'til it's over. Yogi Berra My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

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Suzan AB's picture
Replies 8
Last reply 11/12/2010 - 1:48am
Replies by: Suzan AB, Jenjen, Jim in Denver, Cynthia C, Charlie S, Anonymous

I have been away for some time, livin life and working to pay previous medical testing and the like.  Received some sobering news that I have some nodes/lesions/mets (? I don't know the proper terms) in my right lung.  I am  BRAF: exon 15 V600K mutation.   Please share treatments that have kept the Stage IV Warriors on the War Path.

My best to all with biggest of hugs and loads of blessings from above!  Most importantly...Many Thanks to You All Who Brave the Waters of Fear and Keep Us Informed!!!

Suzan AB  Stage IVa...well maybe Stage IVb now...Purple Painted Warrior Against Melanoma!  With a splash of bright Yellow!

Life is great, PTL!!!

Presently...One Day At A Time.

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Anonymous's picture
Replies 3
Last reply 11/11/2010 - 6:42pm
Replies by: Janner, Brandi, Jim M.

I am 39 yo female with stage 1 diagnosed 6 years ago. Whithin a past 3-4 days I started to feel pressuse in my chest (around sternum) and I have now burning sensation which starts in the lower part of sternum, then moves up almost to the neck and then goes down again. I don't feel the pressure any more and probably burp more that ususally and have the hot feeling in the throat. I have never had such feeling before. Does it sound like a heartburn? I am not sure because I can not distinguish whether it is behind the sternum, in the sternum or this is skin feeling??? I am so worried. Any idea what it could be???? Thanks!

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I am 39 yo female with stage 1 diagnosed 6 years ago. Whithin a past 3-4 days I started to feel pressuse in my chest (around sternum) and I have now burning sensation which starts in the lower part of sternum, then moves up almost to the neck and then goes down again. I don't feel the pressure any more and probably burp more that ususally and have the hot feeling in the throat. I have never had such feeling before. Does it sound like a heartburn? I am not sure because I can not distinguish whether it is behind the sternum, in the sternum or this is skin feeling??? I am so worried. Any idea what it could be???? Thanks!

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Wendi Lynn's picture
Replies 10
Last reply 11/15/2010 - 6:23pm
Replies by: Anonymous, LBN, Napa K, Wendi Lynn, Jan in OC, Kim K, Fen

Hi All!

I have a coworker that is currently being treated for breast cancer at UCLA and she was kind enough to ask about melanoma specialists there for me.  The doctors she was referred to are Dr. Glaspy, Dr. Ribas and Dr. Chmielowski.  Has anyone worked with any of these doctors?  I'm currently Stage III NED (waiting on brain MRI results) and my current oncologist was checking into local trials for me before we decided anything.   Just wondering if anyone has experience with these doctors....

Thanks in advance!


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Anonymous's picture
Replies 9
Last reply 1/30/2011 - 5:40pm


I'am 31 years old, living in France. Last september I was diagnosed a melanoma on my back, 4,01 mm, not ulcerated, 2 mitosis. So from one day to another, I started learning a lexicography I have never heard before.

My PET Scan was clear, as well as the ecography. Then I had a surgery for the Sentinal node biopsy. And it came negative, so it's clear as well.

The dermatologist told me last week that I am in Stage II B (just for 0,1 mm I guess, otherwise it would be stage II A). And she suggest me to take Interferon three times a week for 18 months. Another dermatologist I called, told me that the use of interferon is controversial, and that I should think it well because of the side-effects.

I know that is a personal decision and that is quite difficult to generalize the side effects. As an amateur in melanoma, I will appreciate if you guys, can help me to make myself clear. Thanks,



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ShariC's picture
Replies 10
Last reply 10/27/2011 - 8:57am

Hi All - I just wanted to check in with the board and say that I've finished my first round of bio-chem.  Brutal!  In fact, I'm pretty scared to go back.  I'm scheduled for 4 rounds with surgery to remove a small tumor in between rounds 2 and 3.  I so much appreciate reading this board, but it also scares me so much.  Losing people at 20, brain mets, etc...I just can't believe this road ahead.  Thanks for all the support, advice and kindness.  - Shari IIIb/c in Nebraska

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Jim in Denver's picture
Replies 13
Last reply 11/12/2010 - 10:26pm

BMY is changing the name in anticpation of FDA approval.  There will be a meeting on Dec 2.  Here is an excerpt about the meeting  and a link to the FDA site for more information:

Public Participation Information

Interested persons may present data, information, or views, orally or in writing, on issues pending before the committee.

  • Written submissions may be made to the contact person on or before November 16, 2010.

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kellie1979's picture
Replies 7
Last reply 11/11/2010 - 11:00pm

I went to a dermatologist for a spot on my leg that was hurting....luckily it was only a cyst.  However, she noticed that one of my moles was concerning so she removed it and took a quick look at my back and removed two more.  I am only 31 and never even thought that I needed to worry about my moles yet.  They came back abnormal, I went in for what I thought was a full body check.  The PA did NOT check my whole body (I wish I had known at that time what a full body check was supposed to be) she removed 5 more, 3 from my back, one from my stomach and another one from my leg.  Four of those came back abnormal, the other one the doctor sent back to confirm that to him it appears to be Melanoma.  I have since met with a cancer genetists who thinks I need to be tested for Dysplastic Nevi Syndrome due to my family history of cancer and the amount of moles that I have.

Well anyways, it has been over three weeks since I found out that it may be Melanoma.  Does it always take this long to find out?  I am trying not to worry too much but I seriously have not been sleeping well at all and am about at my breaking point.  Many people in my life do not understand why I am concerned as most of them do not understand there is a difference between Melanoma and the other types of skin cancer that are not as threatening.

I already know that once my pathology comes back (hopefully tomorrow) I am going to go to a different dermatologist as I keep finding moles that look similar to the ones that were removed.  And I don't know if I am just paranoid now but I swear everytime I look in the mirror I find a new mole that I didn't know I had.  I am also worried about my daughter, she is 7 and has had several moles appear lately.  Is this normal or should I be worried about what this means for her?

I am sorry for the rambling, I just don't know what to expect and am not finding much support in my personal life.

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