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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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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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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NSA's picture
Replies 5
Last reply 9/27/2012 - 8:28am

Hello,

My dad found out last week that he has melanoma in his stomach.  He had been having stomach cramping and issues going to the bathroom since the end of July.  He was going in for his 5 year colonoscopy and told the gastrologist about his symptoms so they did an upper endoscopy.  During the endoscopy they found three spots on his stomach.  They took a sample of one of the spots and called a week later to tell him the results showed it was melanoma.  He went to see a dermatologist (which he had never done before) and they removed a suspicious looking mole, but told him it didn't matter what the test results were on that, he need to see a specialist.  We live in the Richmond, VA area and he has an appointment scheduled for next week at UVA.  That's all we really know at this point so now i'm just trying to research as much as I can for him.  I've been a little overwhelmed with all of the info I have found and would just like to know what we can expect going forward.  What will they most likely do at his first appointment?  What questions should he ask?  Should he get a second opinion?  I've read enough to know that once melanoma is discovered in intermal organs it is stage 4 and it looks like clinical trials are the most common treatment. . . is that right?  Any advice or information would be greatly appreciated.  My dad has always been there for me and I want to do everything in my power to help him fight this. 

Thank you,

Nick

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Maereard's picture
Replies 11
Last reply 9/27/2012 - 7:05am
Replies by: Lori C, Anonymous, DebbieH, Janner

Hi All!

I have ANOTHER question;)  Will life insurance companies still insure someone who has been diagnosed with melanoma?  I applied with Metlife a week before I was diagnosed, only because my father-in had just passed away from lung cancer and it occurred to me that I did not have a life insurance policy.  I did inform them that I had recently had basil cell removed and that the doctor had removed a spot for possible melanoma but the chances were very unlikely.  There is no cancer history in my family.  Well a week later I am hit with the news that I am the first in our family and I have melanoma.  The policy with MetLife is still pending because of a lab mix up with my blood and urine, strange yes but nothing surprises me much anymore.  Anyhow my question is, is there anyone out there who has applied for life insurance after an actual diagnosis has been made and were they able to recieve it?  Who did you go with?  Just a google search made it look a little impossible for a few years until I can convience the insurance companies (and maybe myself) that I am out of the woods.  As always thank you all for your replies:)

Beth

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hola's picture
Replies 6
Last reply 9/27/2012 - 7:02pm

My dad was diagnosed in July 2011 (Stage 4), 18 years after the first outbreak !

Metastases in the liver and lung. (4 on the lung and something between 13 and 18 mets on the liver)

After researching, we found out, that zelboraf was approved by the FDA, in Europe it was still only available through clinical trials, doc did not really want to make a second biopsie, which would have been necessary to get into the trial.

I started to fly once every 6 weeks to the US to get Zelboraf there until it got approved in spring 2012 here.

Last CT did not show any liver mets reamining, regarding to the result it is unclear if there are still any mets on the liver at all.

On the lung are 3 left which are greatly reduced up to 70% and way less solid, only one met kept its size (reduced by 10% in the past year)

Condition of my dad is quite good, only sideeffect he has is the sensitive skin (no sun) and sometimes problems with the feet. Age 69 

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Hi all,

Sorry I haven't been too good about staying in touch with everyone on this board but think of you and pray for all every day!  I've been living life!  Tomorrow is my 10 year anniversary with NED!  Diagnosed with Stage IIA melanoma in September of 2002.  Had a high mitotic rate and other unfavorable factors, offered a clinical trial, but decided to just go with the "watch" plan.  Well, ten years later and I'm still here!  Wishing all of you well and hoping and praying that some day soon they will find a real cure for this beast.   Blessings to all, Jenner

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Maureen038's picture
Replies 2
Last reply 9/25/2012 - 3:40pm
Replies by: Maureen038, Linny

My husband has stage IIIb acral melanoma in his left big toe nail. The toe was amputated at end of april and he had one sentinel node with microscopic. His c-kit and BRAF are negative. He had groin dissection in may and everything was negative. He entered a study where he had a 2 out of 3 chance of getting yervoy, but unfortunately got interferon. He went through the month of July with the high dose and started giving himself shots after. His first CT scan a week and half ago showed a 1 cm nodule in his right lung. We are scared to death waiting for the results of needle biopsy which should come tomorrow. We are working with Dr. venna(melanoma specialist) at Washington hospital center who is wonderful and a compassionate oncologist in Gaithersburg. We are also asking for a second opinion at John Hopkins. If anyone has any advice, we would so welcome it!! My husband is 55 and is in good health otherwise.
Maureen

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