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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Kimmie Kay's picture
Replies 5
Last reply 10/2/2012 - 1:17pm

I am hoping to find someone who also has Ocular Melanoma that can help me thru this!

I went to my eye Dr on July 26, 2012 to have him check a "shadow" that had developed in my right eye,

He saw "something" and immediately sent me to a retina specialist who would "see me as soon as I could get there"

Within 5 hours of getting out of bed that morning I had a diagnosis of melanoma..inside my eyeball! 4 days later, I am at the Universityof Cincinnati being scheduled for radiation plaque therapy.

My "official" diagnosis after biopsy and having the raditation implanted for 5 days is "Ciliochoroidal melanoma" that was 16.5mm acrossand 8mm thick. 

I am now legally blind in that eye and have a cataract beginning to cover the lense.  The Dr said the cataract can't be removed for 3-6 months. Has anyone here been thru this? Will my sight ever return?  While I am extremely thankfull that the treatment is working to shrink the tumor, I make my living driving a school bus! Obviously, I can't return to work with only one eye and am afraid I am going to use up all of my sick leave before the cataract can be removed.

Can anyone help me? 

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I am hoping to find someone who also has Ocular Melanoma that can help me thru this!

I went to my eye Dr on July 26, 2012 to have him check a "shadow" that had developed in my right eye,

He saw "something" and immediately sent me to a retina specialist who would "see me as soon as I could get there"

Within 5 hours of getting out of bed that morning I had a diagnosis of melanoma..inside my eyeball! 4 days later, I am at the Universityof Cincinnati being scheduled for radiation plaque therapy.

My "official" diagnosis after biopsy and having the raditation implanted for 5 days is "Ciliochoroidal melanoma" that was 16.5mm acrossand 8mm thick. 

I am now legally blind in that eye and have a cataract beginning to cover the lense.  The Dr said the cataract can't be removed for 3-6 months. Has anyone here been thru this? Will my sight ever return?  While I am extremely thankfull that the treatment is working to shrink the tumor, I make my living driving a school bus! Obviously, I can't return to work with only one eye and am afraid I am going to use up all of my sick leave before the cataract can be removed.

Can anyone help me? 

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sjl's picture
Replies 5
Last reply 10/1/2012 - 2:03am

My husband had his 3rd round of carbo/taxol for his stage 3 mucosal melanoma today.  Before the treatment, they did a scan and his tumors have shrunk 75% plus a second primary lung cancer is shrinking before they got to the radiation they are going to do!  The doctor is very happy and said that sometimes, with mucosal, they can get a durable response with chemo.  Anybody here have mucosal?  I'd like to hear of your expeeriences.  He will have at least two more rounds of chemo and another scan in 6 weeks to see how things are.  So many people are praying for him and our prayers are being answered.

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/28/2012 - 11:20am
Replies by: Liz C, Anonymous, Janner

A shave biopsy in early July, reviewed by 2 top dermatopaths and UCSF, indicates likely MIS.  Am trying to figure out how to proceed to get the highest possiblity of cure (most important) while minimizing scar visibility.  

This article from the April 2012 Dermatology Journal is influencing my decision greatly.  http://dermatology.jwatch.org/cgi/content/full/2012/406/

"To clear the melanomas, 6-mm margins were sufficient in 86% of cases, 9-mm margins cleared 98.9%, 1.2 cm cleared 99.4%, 1.5 cm cleared 99.6%, and 100% of lesions were cleared with 3-cm margins. The 9-mm margins were significantly superior to 6-mm margins (P<0.001).

My Mohs surgeon (former 11 yr. chief of derm surg at major medical center) is offering 2-3 mm margins to start with and immediate closure.  The plastic surgeon is offering a WLE with 5 mm to start, closure, and if that is not enough, the next cut is 5 mm further out past the first margin.  

In the article, 6mm margins has proven to be better -- and 9 mm is much better.  So, I'm considering wider margins than have been offered to me.  

It's very tempting to go with the Mohs surgeon -- the slow Mohs approach.   I will only accept path report on stained, permanent slides (with several en face cuts to the tissue so the margins can be examined well).  The path report will be done at UCSF -- where Mohs surgeons are trained. 

In this particular location, on the cheek, I'm unclear about WHEN the value of Mohs surgery starts to drop off (if it does?) and WHEN does WLE start to offer better cure.  Does the Mohs surgical site marking technique still carry much value -- if the best way to handle MIS is to keep expanding the margin until no more abnormal melanocytes are found? 

Thank you very, very much for any clarification you may be able to offer -- or documents to suggest.   

p.s. FYI, separating Mohs surgery from the pathology work (by sending tissue elsewhere) is considered by AETNA to not be Mohs surgery at all. 

  Aetna Note: 2012:  Note: Mohs micrographic surgery requires a single physician to act in 2 integrated, but separate and distinct capacities: surgeon and pathologist.  If either of these responsibilities is delegated to another physician who reports his/her services separately, the use of the Mohs micrographic surgery CPT codes is inappropriate.

 Source:  http://www.aetna.com/cpb/medical/data/300_399/0383.html

 

"A diamond is just a piece of charcoal that handled stress exceptionally well." —Anonymous

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NYKaren's picture
Replies 7
Last reply 10/3/2012 - 9:25pm

Hi everyone.

 

 I just came from Dr. Wolchok's office, where I was expecting to be put on a stronger regimin of chemo.

Several months ago, I had mentioned DPCP to him, which someone here on the board had suggested to me.  (Frank, Jimmy??)

He and my onc. derm, Dr. Halpern, have been frustrated because they couldn't find anyone here to compound it.  Turns out, it's been on his mind all these months, and he had just (as in earlier today) met a reseacher from Rockafeller University (research university, Dr. Leves, who uses this compound.   I just spoke with him, and he told me that "I'm just what they're looking for!"  Imagine that!  So I'm waiting for the nurse coordinator to call me to set up a screening. 

I'm beyond shocked that this has been on Dr. W's mind for all these months...that's just the kind of guy he is.

Could it be that maybe, just maybe, this would work?  Stay tuned.

karen

Don't Stop Believing

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Maureen038's picture
Replies 12
Last reply 9/29/2012 - 3:14pm

My husband just found out results of his lung biopsy and his one cm lung nodule is melanoma. He met with a surgeon today. He was stage II in March and now we are dealing with stage IV! I am so scared!! They will remove the nodule very soon, but he will be dropped from the study because the interferon didn't work. We live in the Washington/dc area. My husband is also negative for c-kit and BRAF which really limits our choices. Does anyone have any recommendations? yervoy? Anti pd-1? Supplements? I am desperate to help my husband and keep my sanity at the same time. We are seeing a melanoma specialist at WHC, but we are scheduling a second opinion at Hopkins. Thank you for any help!
Maureen038

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kbc123's picture
Replies 16
Last reply 10/24/2012 - 8:34pm

Hi All - I feel the need to post this current situation I was handed.  I am 3A, doing my follow ups as I should with a Melanoma Specialist ( as well as had two visits to NYU for a second look )   I go for my body checks and CT scans consistently.  I had a CT scan in January which showed I had a mass on my Gall Bladder.  Had an Ultrasound that showed - Yes there is something there.  Now, DO you watch and wait and take your chances or get that part removed?  Of course, my personality, get it out.  Comes out two weeks later, I find out it was NOTHING, a benign tumor.  Okay, that problem over.   The stress is enough to kill you. 

Fast forward to September - I again have a follow up CT scan as I should.  Chest, fine  Pelvis, fine  Abdomen?  Well there is a spot on your liver.  Radiology is suggesting a PET scan for metastasis to Liver.  Now, I am besides myself.  My doctor tells me, no PET scan, we want an MRI to see it more clearly.  He doesnt think its anything to worry about.  Oh, OKAY.  No worries. 

I had the week from HELL, never have been so scared in my life.  I get the MRI Monday, wait for results but in the meantime, i read into everyone's moves - the radiologist attitude ( she was so nice to me, she must KNOW i am on my way OUT.  )  Even when the doctor called me yesterday, I heard the voice on the phone and in that instant, I just hear that they are trying to find a way to tell me the horrid news that i am now a Stage IV.   Well, my craziness and assumtions are totally wrong.  I have a clear MRI ( as the doctor said )   The liver is clear.  Gall Bladder surgery and messing around in there back in february could have picked something up or I could have breathed wrong or had an internal muscle reflex that made a spot show.  I cried, all day.  Tears of happiness, tears of stress release.  I really cant explain it.  Maybe someone out here knows what I am talking about.

So , instead of putting myself in a Stage IV warrior category, i am still my same ole, same ole 3A and waiting for the next three months to go by so I can do this all again.  STRESS can KILL You.  I am currently looking for someone to help me with that part of my disease because I think that STRESS will kill me before the beast will. 

I hope this note finds all having a happy healthy day. 

 

Kathy from NJ

Still and hopefully always will be a 3A

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Rinn2012's picture
Replies 8
Last reply 10/4/2012 - 10:31pm
Replies by: simone, shelbug66, Janner, Anonymous

Hi I have been newely diagnosed with melanoma stage 1B. The Path report stated 1.2mm in depth, and less than 1mm for mitotic rate and no ulceration.  I have to have a wide margin biopsy and lymph node biopsy.  I have surgery the 5th.

I was wondering has anyone else had the stage B and have it come back?

I know I should worry about one thing at a time, since I havent had surgery yet, but I have seen so many of you that started at stage 1 and then it has come back and moved up stages.

thanks for your input

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losborne00's picture
Replies 5
Last reply 12/1/2016 - 12:13am
Replies by: SUE LONSWAY, losborne00, Anonymous, Janner

Hi Y'all,

I'm new here and looking for some information on what "melanoma ulceration" is. I had a melanoma that developed under a toe nail and was diagnosed 2 years ago (although the lesion had been there about 6 years).Sub ungal acral lentiginous melanoma was the official diagnoses. The first biopsy was a 2mm punch that described no ulceration present. After my toe was removed at a leading hospital in the southeast, I got a copy of their path report and it seemed to be lacking recommended diagnostic measurements. The pathologist was presented the entire toe to examine. The path report lacked important info. No mitotic rate, lymphocyte infiltration, ulceration present or not etc. The only info was Breslow's depth, tumor mass, visual description of the lesion and confirmation of melanoma. The breslow's depth was 4.5mm. I was staged IIb with the only thing keeping me from IIc was ulceration which wasn't mentioned in the second path report. Since there is a LARGE difference in survival rate between IIb and IIc I'm a little concerned about ulceration and it's medical definition regarding melanoma. When my toe was amputated the lesion had "consumed" my entire nail and left a reddish depression where the nail was. There was also flaking skin that sometimes bled and was sore. The entire toe was inflammed and reddish along with the usual dark spots of melanoma cells in and around the former nail bed. It looked ulcerated to me but I'm not sure what the medical definition is. Is it a definite test that is done or is it a subjective observation of the pathologist? Can ulceration be diagnosed by the first punch biopsy? Thanks for any help!

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POW's picture
Replies 2
Last reply 9/29/2012 - 7:56pm
Replies by: aldakota22, Mickey n Jo

My brother is Stage IV with mets in brain, lungs, adrenal, and intestines. Had WBR in early July and started Zelboraf in late July. He had no problem with side effects. MRI in early September showed old brain mets stable, but 3 new ones appeared. Clearly, Zelboraf wasn't doing what we wanted in the brain. However, we didn't know what was happening in the rest of his body. Was Zelboraf working there?

So he stayed on Zelboraf for 3 more weeks (total 2 months) and got CT scans yesterday. All non-brain tumors shrunk by 50% or more; several small ones gone entirely (including adrenal), and no new ones. That's great! We don't know what's going on with the brain-- did those mets get started in the 4 weeks before he began Zelboraf? Is Zelboraf doing some good in the brain but just not enough? Nobody knows. Zel is too new for anybody to have much experience with it. Trying to schedule gamma knife at Moffitt now. Will continue Zelboraf for 2 more months and then repeat MRI and CT. Overall, very good news. Champagne tonight for all!!

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Mickey n Jo's picture
Replies 5
Last reply 9/26/2012 - 10:11pm

Hi, again. Let me begin by saying that we almost feel a little guilty posting a question knowing what Kevin and Brenda are going through right now. All else pales in comparison. My husbands most recent scan came back pretty much the same as the previous one, with a decrease in size of some mets and a slight increase in size of some others ( no new ones though ). I guess this is good, since he was off the Zel for almost two weeks due to the side effects. He's feeling a lot better now and has started on the Zel again, 3 pills morning and night, and so far no side effects. Should he continue with the Zel, since it is working, or should he consider switching to Yervoy? He's leaning towards continuing, especially since he hasn't had a problem with any side effects now.  Any information would be appreciated. Thanks.   

                                                                                                                   Jo

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bron's picture
Replies 1
Last reply 9/27/2012 - 8:50am
Replies by: AllyNTAus

hello again,

please let me first note.

i have been following everyone on this board and are constantly amazed at your strength, both as individuals and as a group.

 

My daughter is still waiting on the large hospital here to give her an appointment , however, bless her local GP who has decided to

give my daughter a very thorough check up (no scans yet). Ironically the only health issue that has come out of this is a seriously low vitamin D issue.

Obviously she cannot "sunbake" (in australia you would fry or get another melanoma before you would get enough vit D from our sun) so she is on supplements

and upped her natural intake through food.

We have contacted the Poche centre in sydney (we are in Brisbane) and they say they will look at her path results both initial and from her

surgery (we didn't get any from the surgeon so that is another delay while we request them).

I have become very determined to have some of these australian sites to give more information and feedback... i keep referring them to this site as a model to copy. It must be terrifying to people here in Australia to be diagnosed and not have anywhere to get basic information. It was for us before i found this site.

Something as basic as testing for vit D (needed for the immune system) was not even mentioned by the surgeon...

It seems in Australia that if you don't do your own leg work you remain afraid and in the dark. My daughters surgeon made the comment,

(when i complained about lack of information) that ""most people don't want to know so i don't tell them anything"".

My comment on this.... give them the choice...

very kind regards from bron

 

 

 

 

 

 

 

 

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kpcollins31's picture
Replies 1
Last reply 9/30/2012 - 8:35am
Replies by: triciad

Reached stage IIIC a couple weeks ago after a lump in my arm turned out to be a lymph node swollen by melanoma. Surgery yesterday to remove the cancerous lymph node in my left arm and to perform another sentinal lymph node biopsy. Arm is sore as would be expected. The mapping process this time around seemed much more thorough to me - nice work by the folks at Wake Forest Baptist Health Center. They very clearly identified 4 lymph nodes. The locations were surprising to me since they were in my upper arm (between my armpit and elbow). My first SNLB over a year ago took some lymph nodes below my armpit area which was much further away from the original melanoma site. Interestingly, the cancerous lymph node that was biopsied about 2 weeks ago did not get mapped - they speculated that the biopsy might have damaged the lymph pathway.

Now it is the waiting game again. Pathology results expected in a few days. Hoping that none of the other lymph nodes contain signs of melanoma. If they do, I am just going to ask them to put in a zipper down there :).

Kevin

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Angela C's picture
Replies 2
Last reply 9/26/2012 - 9:24pm
Replies by: jag, Charlie S

Hi everyone.

Those of you who have had SRS, can you fly after that procedure? Is there a certain amount of time you are supposed to wait before you hop on a plane? I have SRS scheduled Octioer 1st and then I fly back to NIH for a follow up appointment on October 27th. They know I'm having SRS, so I assume it must be fine. But, just wondered other people's experience?

Thanks!

~Angela

Be kind, for everyone is fighting a great battle. -Plato

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Dhoke3's picture
Replies 7
Last reply 9/29/2012 - 4:28am

Hey all, I recently found out I had melanoma in situ. I was very lucky to see my dermatologist only a month after I noticed the spot and had it removed. I now know though about sun smarts. I dont go out in the sun with out sunscreen... hat... the usual... My question is that I get very frusturated when going to the beach with friends or hanging out with people who just want to "lay out" and "look healthy". I cried the day I realized I had no tan lines on my body because I was so happy,  to me that was what it meant to be healthy, but other people have different points of view. How do you handle being in situations where other people are laying out in the sun and you are hanging out under your umbrella? I often will hear people  saying things like "Oh why are you hiding under there! Come on out and get some color on your skin!" And I want to crawl even farther under that same umbrella. Any advice would be greatly appreciated! Thank you! :) 

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