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.

Expand/ Collapse Topic
 
Replies By
View Topic
-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.

Login or register to post replies.

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!

Login or register to post replies.

jahendry12's picture
Replies 27
Last reply 12/10/2015 - 8:32am

Hi All - I'm friends with Artie on fb and today he posted that he is now in the hospital in ICU and is very weak. 

Just wanted everyone to say a prayer for him. 

Login or register to post replies.

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!!

 

 

Login or register to post replies.

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 

 

Login or register to post replies.

Bearsworth's picture
Replies 5
Last reply 12/9/2015 - 7:04pm
Replies by: Bearsworth, Gwenmorgan, kylez, arthurjedi007, Anonymous

Image tried just about everything. I am to the point I can't sleep at night. This itching is driving me crazy. It's all on the inside of my arms, my neck and all over my back. I have tried Benadryl, Zyrtec and all the creams. The creams are a very temporary fix. Has anybody had any luck managing this?

Login or register to post replies.

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

 

Login or register to post replies.

Kare83's picture
Replies 11
Last reply 12/9/2015 - 5:10pm
Replies by: Kare83, Janner, Ed Williams

Hi, I'm Kare. I had a stage 2 melanoma removed a few weeks ago, followed by a wide-margin excision last week.

My doctor told me it was stage 2 - the mole was on my upper right back (on my shoulder blade).

I know melanoma can always come back. I am concerned as everything I have read tells me that stage 2 melanoma usually has a growth of 2mm+

Yet on one of the cancer info sites (might be this one, I can't even remember where I read it now) it says a melanoma only needs to be 1mm to have entered the bloodstream?

So I'm not sure what this means? Is there anything more I need to have done?
I have been put on 3 monthly checks now.. as melanoma also runs in the immediate family.

Also, what is the difference between Stage 2 and Level 2? I have read some people talking about level 2 and not sure if it the same as Stage 2 or not?

Just want to make sure I have all bases covered. I am getting frustrated with people around me at the moment.. They think it is all over yet I am on edge and feel like it can be discovered elsewhere any day :( I know stage 2 is still early to have .. I don't feel I have the right to really even talk about having melanoma, considering what everyone else is going through.. I just want to make sure I understand everything I can about it.

Login or register to post replies.

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

Login or register to post replies.

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 

Login or register to post replies.

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.

Login or register to post replies.

micheley's picture
Replies 14
Last reply 12/9/2015 - 12:44am

Hello everyone,

 I wanted to get back and update you all on my Yervoy journey. I had my first Yervoy infusion at the University of Pennsylvania -- 10mg/per kg of body weight -- on November 19th. I was hoping to be able to get the dosing reduced to 3mg/per kg of body weight but my insurance (Cigna) would not consider that dosing since the study from which the Stage 3 approval came - and for which the benefit was proven -- was at the 10mg dosing. Of course, by far, most of the side effects/toxicity experienced come with the 10mg dosing vs. the 3 mg dosing. It was a tough decision to make but, for me, the risks were something I was willing to accept.

So, I am just about 2 weeks from the initial infusion. About 4-5 days after the treatment, I started to experience some mild abdominal discomfort. In fact, I did not have a bowel movement (BM) for two days prior to the onset of the discomfort. Then, on the 4th-5th day I had a couple of normal BMs and a couple of loose BMs. The next day the same thing. Of course, I called the doctor's office right away -- since colitis/perforated bowel was how folks died in the clinical study. They weren't too concerned but told me to take Immodium after each BM and that if it happened more than 3 times the next day I was to call back and let them know immediately. Fortunately, although, the mild discomfort continued for a few more days the loose stools did not. My BMs had become softer but no longer loose -- first symptom dealt with! (NOT to be too gross but I also noticed a significant change in the smell of my urine. It has a very strong, chemical smell. It does seem to be lessening but it has indeed changed.)

Last week, about 1 week from the initial treatment, started a pretty good rash, which is a common side effect for a lot of patients, mostly concentrated on my earlobes, neck, face, upper chest and upper back, and my armpits. They are mostly small, individual, red, and pimple-like. They are itchy but not terribly so. The worst of it seems to be located under my armpits where the rash is more concentrated, raw, and sore. I started with a prescription strength cortisone cream at .1%, but it doesn't seem to be managing it so I got another lotion called in today which I will start ASAP.

So far to date, the rash is the worst of it but we'll see what each day and next week's 2nd infusion brings. I am scheduled for the 2nd infusion on December 10th. I am more nervous about this next one as the doctor indicated they see more effects with each treatment as the build up and change to the immune system is cumulative.

I will continue to update you all as I move through this journey. It is scary but something I feel I need to do to try to recapture a little peace of mind -- if there is such a thing with melanoma! Also, I would love to hear anyone else's experience on Yervoy if you're Stage 3 and underoing treatment.

Peace, healing, and comfort to everyone fighting this wicked disease.

Best,

Michele

 

Michele C Yerger

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 5
Last reply 12/8/2015 - 6:35pm
Replies by: Anonymous, arthurjedi007, Millykamp

Hello!    I have noticed a patch near my collar bone; lymph node location, that is slightly raised and discoloured.    When I run my hand over it it is swollen to some degree.     I am a stage 3 melanoma patient and had completed a year of Interferon July 2013.    Is this anything I should be concerned about or simply wait another 3-4 weeks and see if it disappears?  I don't like worrying about these things but admit to feeling a little worried when certain things present.   Thank you for your help.    Take care.

Cathy

Stage 3a

Login or register to post replies.

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

Login or register to post replies.

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

 

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

Login or register to post replies.

Pages