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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ChristianDude1990's picture
Replies 1
Last reply 12/10/2015 - 10:05am
Replies by: Janner

Hi I had 2 moles removed, one behind my ear and one on my leg. Please can someone explain in lamens terms what these results mean?

 

MACROSCOPY

A hairy excision of skin, 0.4cn.

An excision of skin, 0.9 x 0.7cm. The epidermis contained a pigmented lesion, O . 6cm.

MACROSCOPIC EXAMINATION PERFORMED BY DR E RAAN MICROSCOPY

SPSCIMZN 1 :

The excisional biopsy displays skin with pigmented intradermal naevus. The epidermis displays irregular acanthosis. The dermis contains nests of pigmented naevus cells and single naevus cells descending the underlying dermis with

maturation. No dysplasia or neoplastic changes are present.

SP3CIMSN 2 :

The excisional biopsy displays skin with architecture distorted pigmented compound naevus

The epidermis displays irregular acanthosis. Located at the epidermal/ dermal junction are single pigmented naevas cells and nests of naevus cells

representing junctional activity. The papillary dermis displays lamellar and

eosinophilic fibroplasia. The dermis contains pigmented naevus cells arranged in nests and single lying. Free lying melanophages are present in the dermis.

No atypical mitoses or pagetoid infiltration of the epidermis is identified.

The features are consistent with architecture distorted pigmented compound

naevus .

DIAGNOSIS

SKIN FROM RIGHT SKIN ?ROM LET LOWER LEG

PIGMENTED NAEVUS.

ARCHIECTURE DISTORTED COMPOUND PIGWNED NABV3S .

 

My doctor just said the one on my leg was "weird" but there is no cancer on either mole. What does he mean by weird and what does this report actually say?

 

Thanks in advance!

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-f7-forlife's picture
Replies 2
Last reply 12/10/2015 - 10:16am
Replies by: Janner, -f7-forlife

Hey everyone. First-time poster. I won't lie, I feel a little guilty, albeit selfish, for making my first post a call for help. I also feel very uncomfortable about this because I have never spoken about it with anyone. It has remained a secretive issue, one that has always dented my self-image.

I've always had more moles than the average person. They're all over me. They range in size, but none have ever been very concerning. They've typically followed the ABCDE's.

More recently, however, in the past few years, more have been popping up all over me. There are a bunch of small red ones in every location of my body. There are enough now to where it has become a serious concern. I won't take my shirt off around anyone- it has damaged my social life and I don't feel comfortable discussing it with anyone close.

The one time I made mention of it was when one of my friends asked me why I always had bandages on my arms and legs. I told him I was using ACV to eat away some pesky moles and he told me I was insane. He did not react supportingly at all to my insecurities and was kind of freaked out by it. I know this isn't a good idea because it can hide malignant melanoma, but when you're so down in the dumps about it and don't have the money for professional care, what else are you going to do?

It's so bad, I haven't had a lay in over three years. Any time a lass comes along, I push her away out of fear that she'll be disgusted once I take my shirt off. It's that bad. Be as it may, however, I can live with a poor sight of a body because I can still be ambitious and try accomplishing things in life. What I can't live with is a hidden melanoma, because I know melanoma is a swift killer.

I am 25 years old, and unfortunately, the unlucky one of the family to be born with a fair complexion. On summer outings, the focus was always on me to wear sunscreen, and a whole lot of it, too. I always believed if I just tanned up enough, that I could do away with the sunscreen and join my peers without fear on the beach.

Sadly, life doesn't work this way. I've endured several extreme burns that have left me in agonizing, itching pain. When I thought I was some beach-hunk, I ended up paying for it for the next week by keeling up next to a fan to keep my burning skin cool so the itch wasn't so intense.

I believe I am now paying the price for my ignorance toward proper skin care in the sun.

Maybe all of this introduction could have been skipped. I'll now explain why I'm here.

Three years ago, a mole developed on my chest, one that isn't like the rest. It is not symmetrical. There is a light shade on one side, but the other side is darker. Here is a picture of it. I know that I will be told to see a dermatologist if I'm concerned (working on that), but I would like to see what you guys think.

This mole hasn't changed, at least from what I can remember, but after reading more about melanoma and seeing sample malignant images, some have come across looking exactly like the one I have.

Here it is: http://i67.tinypic.com/2zznhq1.jpg

This is located on my left pectoral, slightly below my collar bone. At the bottom center of the image (or center of my chest) is one of those red moles I was telling you about. They are all over my body and have been rapidly appearing over the past few years.

It doesn't ever itch or bleed or any of that, but when I saw sample assymetrical images, I started to panick. I know that melanoma can spread rapidly, and if this is malignant, I may already be screwed because of how long it's been there (which may explain the rapid formations everywhere else. Who knows, I'm no doc).

I was just curious to see what someone else thought before I start collecting my things to see a dermatologist. Life is short enough already, I would rather have some extra time to go out and do things I love, instead of living in constant fear. Who wouldn't, though?

 

Thank you for bearing with me through this introduction. I am so sorry for being selfish and making my first post a call for help. I really didn't know what else to do, though. Any opinions or advice is graciously welcomed.

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Kare83's picture
Replies 7
Last reply 12/11/2015 - 9:29pm
Replies by: mjanssentx, Anonymous, Kare83, Janner, Patina

HI there,

With a lot of help from some others here on the board, we worked out that my melanoma removed last week was a Stage 1a (Clark Level II, 0.4mm).

I am feeling great and the amount of information and support I have received from MRF and other Melanoma organisations in my city has been amazing!!

I was just wondering how everyone here keeps on track of their moles and tracks changes?

I have a lot of moles, freckles and age spots turning up all of the time. I downloaded one of those body mapping apps earlier today and took a few photos of some moles, before realizing that it is absolutely hopeless as I more moles than what I can even count.. 

My doctor tells me I have nearly every kind of mole imaginable.. I feel like a walking canvas!

It's really frustrating and I know I can ask my husband to help keep an eye on my back but I can't help but stress over everything I can't see. I have new moles appearing all of the time and I just don't know how I'm supposed to stay on top of this. Any tips or advice would be greatly appreciated!

I'm 32 with a history of melanoma in the family (grandfather & brother).

Is there any way of telling when will the moles might stop appearing? How do you all monitor everything?

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jodaro's picture
Replies 2
Last reply 1/13/2016 - 6:37pm
Replies by: jodaro, AshleyS

Hi All,

Quick backstory, I'm a 42 year old male, no family or personal history of cancer. I have dark hair but blue eyes so I'm probably considered fair skinned. I'm definitely someone who enjoys being outside, and while I wouldn't consider myself a sun worshipper in the typical terms, I'm out enough that I, admittedly, should be better about covering up and wearing sunscreen. I have taken it more seriously recently, but I've definitely had my share of sunburns.  

This past summer whilst on vacation my wife and kids said there was a mole on my back that looked strange. I didn't take it that seriously, and said I'd go in and have it looked at but always had some excuse as to why I hadn't yet called the doctor. I hadn't been to see my primary care physician in a few years as for the most part I'm healthy, active, don't have any major health issues (aside from asthma which is very well controlled). I'm also a fantastic procrastinator and someone who is good at minimizing the severity of things.

Eventually I got around to calling my doctor and scheduling an appointment (last month, November 2015). I figured I'd bundle in a cholesterol and blood pressure check, flu shot, etc. I could also ask him what the current suggestions were for a 42 year old in terms of prostate and colon screening.

I showed the doc the mole and he said "dysplastic nevus", wasn't terribly concerned but absolutely agreed that a trip to the dermo (to which I have never been, incidentally) was totally worth it for peace of mind. He recommended a practice that was a bit more of a drive but that he had good experiences with. I called and made the appointment immediately, assuming that if I didn't do it now while it was on my mind, it might not happen.

I believe they saw me the next week. I showed the doctor the mole, and she looked around a little bit more at my back. "Yeah, we could biopsy that ... but I'm actually more concerned about this one." She pointed to a much smaller mole further up near my shoulder/neck. "Which?" It had never really stood out to me (probably in part because I couldn't really see it). She took a picture and showed me. That one? That's nothing. Nonethless, she did a shave biopsy of the two of them, and I was on my way.

Over the next couple of weeks, I read up briefly on the types of skin cancer, but didn't take it seriously as I figured I had nothing to worry about. Of course interspliced within the waiting period was the Thanksgiving break, which added to the delay of the results. Every couple days it would pop into my head "Huh, I wonder if those lab results have come in ... ", and then about as quickly I'd forget. There was probably nothing to report. Eventually I'd call them and they'd say "oh, yeah, nothing there, carry on!" On the Monday after Thanksgiving, I thought "I'll call them this week." I didn't. They called me on Friday.

It was the doctor. "That mole you came in for is nothing. But the one further up came back positive for melanoma. The initial lab sent it on to another lab for a closer look, and they verified it. You should have it removed completely for a more in depth diagnosis." (OK, thats not an exact quote, but that's what they said). I was in shock, but I didn't panic really. I scheduled the procedure for the following Tuesday, which was yesterday. I should have asked more questions, but I wasn't really prepared.

Between last Friday and yesterday, I read up on as much as I could about melanoma, trying to stay on the clinical/factual side and not too much on the anecdotal/personal story side. It obviously isn't that the latter information isn't important, but I really just wanted to know the facts for now. I had more questions about the labs findings but given the timing, I wasn't able to reach the doctor and figured everything would be available when I got there. The best thing for me at the time was education.

When I got to the doctor's office  yesterday, armed with the knowledge of diagnoses, stages, procedures, etc. I asked for the pathology report. Here are the specs:

Nevoid melanoma, Breslow thickness of 0.75mm (at least), no ulceration detected, mitotic rate of 1/mm2, vascular invasion not detected. The stage is pT1bNxMx ... I'm guessing those x simply mean that they can't determine the spread to lymph nodes/distant sites because the biopsy is only the raised layer from the shave.

The doctor did a wide excision with a 1cm margin, the whole thing is about 2 inches long (and still bandaged). Fortunately, I think it went fine, and now, a day after, I don't have much pain. The doctor said that she didn't think a sentinel node biopsy was required a this time, and to see what the full diagnosis from the sample was before proceeding. She did order an LDH test and a chest x-ray in the meantime. She checked lymph nodes in my neck and groin and said everything felt fine there.

That's where it all stands. From my searching and reading, it sounds entirely likely that, aside from yearly trips to the dermo, I could be done with this. I hope that's the case. I don't think I have any major questions right now, but any insight or things this community thinks are worth looking into further would be greatly appreciated. I think I'm doing ok emotionally, and trying to just hang in there until I know the full extent. It will most likely be a couple weeks until I have the next results. 

Thanks for reading.

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Anonymous's picture
Anonymous
Replies 0

Hi all - I wanted to share these sunscreen dispensers with you as I think this could be a great thing to raise awareness and get future generations remembering to wear sunscreen. The plan is to put these dispensers in all public areas for free. Hopefully this can become a movement and help lower the rates of skin cancer in the future. Let me know what you think. www.thesunshield.com

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fallingstars's picture
Replies 15
Last reply 12/11/2015 - 1:42am

Hi people, I was diagnosed with stage 1A melanoma, 0.4mm, no ulceration, no angiovascular or lymphvascular invasion, mitosis less than 1/mm, clear margins already after the basic excision (no less than 1,1 mm) two weeks ago. Tomorrow, I will undergo WLE. During the five weeks I was waiting for the excision (yes, five weeks!), I was going through hell already knowing that it will probably be bad, but not cetain how bad exactly... After the diagnosis, I was on one hand oddly relieved it is thin, but on the other hand, I am having hard times coping with the diagnosis. There are better times when I have a lot to do and do not worry that much, and then there are worse days (like today) when I come back to this foru.m and just worry about the future. I would love to stay positive all the time as I do have the probably irrational fear that for every second of not believing it will strike back sometime in the future. All these stories of recurrence here...:-( However, I am thankful for this forum cause it gave me a big insight and hope. I know that I was pretty lucky catching it earlier than later, but it still changed my life for ever... I was always an optimist, but now I just cannot find myslef in the right place...:-( I can turn from a laughing girl to a sobbing hypochondriac (yes, I constantly touch my lymph nodes, observe my bones, and revealute my health status which makes me of course not feeling well at all) in a second nowadays...my boyfriend should be given an award for patience, actually :-)

However, Inhave several questions I would like to ask you guys:

1. I plan to change the derm after the WLE cause I am not entitely convinced he's the best... What is the best recommended procedure with my stage after WLE? I already spoke to a melanoma specialist (one of the best in our country) and he was very kind (opposed to my derm) and told me the recommended procedure for my stage after the WLE are dermatologic check-ups twice a year. Is this correct? My derm was talking about x-rays and ultrasounds (but no SLNB, which I find very odd... He just told me that's way they do it here), the specialist said he considered it unneccessary with my pathology report and that he would opt for letting me live without this fear from scan outcomes (unless something is wrong, of course). Is it Ok to just go wit the regular derm checks? I'd from neurosis with the x-rays...

2. I am 32 year old girl without kinds yet. I have a good career, love my job, but this diagnosis changed my perspective and I do not want to wait. I read research studies that there is no proven connection between melanoma and pregnancy, and some articles and doctor statements that it is OK not wait with pregnancy in my stage. Is this true? 

 

Last but not least, sorry for my English - I am from the Czech Republic, so it may not be prefect.

Thanks in advance for your support guys, some of the stories here are petrifying, but some of the NED stories here are so full of hope I cannot even tell how it can help. Luck to everyone of us!

 

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ndfrc's picture
Replies 6
Last reply 12/9/2015 - 6:22pm
Replies by: BrianP, Anonymous, Jubes, ndfrc, Patina

Hi everyone,   so my wife(42) who has been diaged with stage 4 mets stemming from breast cancer about 4-5 yrs ago now, went thru the chemo, radiation, under arm lymph nodes removal, breast lumpectomy, etc, things seem to be okay from that perspective, now in the past month or so now she has melanoma, a good sized section was taken from her shoulder/arm area(stg2), that took 2 times to get it clean, a week ago she had more spots 'shaved' of her back, at that time a swollen lymph node was detected on her elbow(same arm) which needs to be removed, going to the surgeons on fri to discuss this procedure. So now she is beside herself.. reading so much on the internet(never a good thing, cant get her to not go there), melanoma with lymph node invovlement certainly doesnt sound entry level, Its been challenging at best to support in whatever way I can, but besides just being there for her, it is the most frustrating thing to wactch what is happening and not being able to do a damn thing about it, and now with melanoma.. where is this going??

I know we will find out more in a couple days, and i know there are many out there that are in the same boat, but geez... work, kids, , just everything, why isnt this happening to me instead of her?

thanks for listening, i guess i feel better.. i needed to regain focus.

-keith

 

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Good questions and answers to the problems I have had..

 

http://melanomainternational.org/2015/12/december-8-2015/#.VmdRv7grKM8

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Augrad80's picture
Replies 1
Last reply 12/8/2015 - 5:35pm
Replies by: Tim--MRF

I have a dear friend that lost her four year battle and her service is today in Mobile, Alabama.  Her husband wanted to ask people to make donations to help fight cancer in her name. neither he or I know how to do what I want to do.  

Her battle was Melanoma.  Therefore I think I am in the right place.  Is there a way that people can come and make a donation in the name of Liz Grisz where her husband will know how much was donated in her name?  He might even want to know who donated so he can send thank you notes.

Thanks in advance for your help.

anyone that can help me could send me a direct email at: macdonald1980@gmail.com

My name is Alex MacDonald

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nc1983's picture
Replies 6
Last reply 12/9/2015 - 11:08pm

Hello everyone,

What an amazing community going on here. So glad I found this. 

I searched the forums to try and save anyone from typing the same thing again, but I couldn't find an answer. 

My dad is 60, stage IV and is currently on his 2nd round of Yervoy/Opdivo. His Dr. gave him a half dose of each for the first round to test his body if he could handle it. He was bed ridden when he took it but a week later we were doing short walks. It was amazing. All the specific targeted pains went away. But a week after that things began to crash again. He got his next dose of Opdivo and didnt seem to do much, but then when he got his first full dose of Yervoy, within HOURS he seemed to be doing better. 

Despite the return of his mobility, the pain is still pretty bad, Oxycontin and Vicodin barely get him through the day. And also his groin lymphnodes are getting sore, and a lump where they removed a lymphnode on his shoulder is getting larger, as well as possibly a new one on his neck. 

His doctor wants to wait to get through these innitial four doses before considering any new scans. 

My question to those of you who have been through this, specifically with aggresive tumor growths, did it seem to get worse before it got better? Do you think it's wierd his doctor doesn't want to biopsy these growth areas and consider surgery? Also, we are told he can only do 4 doses of the combo treatmnet before switching to Opdivo only. Has anyone done the combo longer?

Naturally we are desperate for anything positive. Because seeing new pains/growths DURING treatment of course makes us worried it isn't working. Any thoughts or experiences from those who've had success with this treatment would be greatly appreciated. Thank you!!

 

 

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David21's picture
Replies 10
Last reply 12/9/2015 - 10:06pm

Hello, my name is David from Ottawa, Canada  I was diagnosed with melanoma on October 7 from a scrape biopsy on September 22. The tumor was 4.9 mm and ulcerated from a 2 cm x 2cm x0.5 cm , (size of quarter) looked like a blister by my ankle. I had surgery on November 24 with 2 cm wide excision on margins, sentinel lymph node biopsy and skin graft. All the biopsies,  3 lymph nodes and wide margins were negative.  I am currently melanoma free that can be seen, but high risk. Also a CT scan was taken on Nov 4, which was negative. 

Questions for my stage 2c diagnosed melanoma with survial rate approximately 50%

1. I will need to make a decision on interferon. Apparently it only increases the survial rate by 6% for thick melanoma  ( >4mm) and there are lots of side effects. I am an endurance athlete.  Is it worth the pain ?

2. Since I am node negative,  I cannot receive clinical trials,  which increase survivability by 50%.  Should I wait or push oncologist since it is thick melanoma? 

3. Final option is to have a CT scan done every 6 months and focus on being strong through my sports and diet to fight any future cancer. Any feedback on waiting ?

 

Thanks, 

 

David 

 

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mom3girlsFL's picture
Replies 5
Last reply 12/9/2015 - 3:20am
Replies by: emagdnim83, Tim--MRF, Anonymous

Happy to report as of Nov 19 my PET impression reads:

1. Excellent response to chemotherapy. Interval resolution of hypermetabolic activity associated with retroperinoteal adenopathy and significant decrease in para-aortic node size.

2. Mild increase activity seen in the mid thoracic spine and spleen, consistent with a hematopoietic response to chemotherapy. 

I sure had a lot to be thankful for this past Thanksgiving! 

These results are after being on Tafinlar/Mekinist combo for a little over a month!

So onc basically told me "It's gone!"

Having MRi on thoracic spine today and we are keeping eye on enlarged spleen.

Now...here's where i need help...

Am I really 'cured'?  Will I be on some form of meds forever to keep mel away?

Thanks for your help and my apologies if my questions seem naive...

Do not fear tomorrow, God is already there.

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Jubes's picture
Replies 3
Last reply 12/9/2015 - 5:23am
Replies by: Jubes, Bubbles, BrianP

Hi all

had my 3 monthly Pet and ct scans yesterday and my lung tumour has shrunk and SUV decreased from 10.2 a year ago to 4.5 in September to 3.5 this time. This is great as I had to stop pembro in August after 11 months  due to really painful spondylitis through my whole body. Meanwhile for the spondylitis I have been on a combination of steroids and anti inflammatories ( ketoprofen and plaquenil) and am gradually weaning off prednisone. The oncologist is really happy and rheumatologist is going slow on the side effects and will only pull out the infliximab if all else fails. Thanks to all of you who have helped me with info and moral support!!

anne-Louise 

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Cmako44's picture
Replies 4
Last reply 12/10/2015 - 11:36am

Does anyone out there have mets in spine, ribs pelvis, femur, etc? My sister is 31 and just recently diagnosed with stage IV melanoma in her spine, ribs, pelvis area, and a couple other places.

She is seeing a specialist (Dr Luke) at Univ. of Chicago and getting on a plan within the next couple weeks. I'm wondering if anyone can share stories of having similar mets in only bones or someone that may have seen Dr. Luke and has any treatment stories.

Ever since her diagnoses (which caught our family off guard flipping our world upside down) I have been trying to do research on drugs and trials. I am so scared and she is too, however we are trying to remain as positive as we can. Hopefully someone out there can relate to her that can give me any feedback..someone who may possibly have a success story or be NED who was stage IV with cancer in the bones. I have read that it is harder to treat in the bones as well which I do not know if that is true or not. I would give anything and everything for this to go away and her to be NED.

God Bless. 

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jennunicorn's picture
Replies 35
Last reply 12/10/2015 - 1:36pm

Hey all,

I am 28 years old with stage 3b Melanoma. I have just talked with my oncologist today about treatment options, and since there are no open clinical trials for my stage at the moment, the 2 options were watch and wait or Yervoy. I opted to do Yervoy because the anxiety of the watch and wait would drive me nuts. 

I know everyone has different reactions and experiences with their treatment, but I am wondering if anyone else out there that is currently on or has done the Yervoy 10mg/kg treatment has any advice?

I've read that there are usually some pretty bad stomach and intestinal side effects. Are there certain foods that seem to help people vs. foods to avoid when doing treatment? How do you typically feel during and right after an infusion?

This is all kind of scary and weird for me, but I am a healthy young person besides this whole Melanoma thing. I'm hopeful that I will get through this treatment and keep my fingers and toes crossed for no recurrences. 

Thanks,

Jenn

Jenn - Stage IIIB  (currently doing Ipi [Yervoy] adjuvant treatment)

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