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
Anonymous's picture
Anonymous
Replies 3
Last reply 8/14/2014 - 1:17pm
Replies by: Anonymous, Janner, casagrayson

the description by my dermatologist was: dermoepidermal junction contains a primary nested melanocytic proliferation.Within the superficial dermis, discrete nests of melanocytes with slightly smaller nuclei are present. Lateral to the dermal portion of the lesion,slightly atypical melanocytes proliferate which bridge and fuse adjacent rete and are associated with a superficial fibrosis of the papillary dermis.In foci there are melanocytes in suprabasal locations with larger nests.

 

diagnosis:     Compound nevus, dysplastic type with moderate dysplasia, extending to the base of the specimen.

conservative re-excision has been advised. I am just looking for more feedback on this as this is in a region with very close proximity to lymph nodes and other vital organs.

 

Login or register to post replies.

Lyric17's picture
Replies 24
Last reply 8/14/2014 - 8:51am

Hi everyone,  my name is Lyric and yes that is my real first name. I am 30 years old and I seem pretty healthy except for an issue I have going on with my index finger nail.

 

About a year ago I noticed a small skinny pale light brown streak on my nail. The line is near the side of the nail and not the middle of my name. It runs from the cuticle to the end of the nail. And to be honest I use to smoke and had quit about a month before I noticed this discoloration of a line on my nail. So when I spotted this I thought it was nothing more than cigarette tar stain to my nail and it would slowly go away since I was smoke free.

 

Six months went by and nothing changed. The small skinny light pale brown streak was in the same spot with no changes. My fiance kept telling me I was worrying over nothing and just to forget it and as you age your body changes. At the moment I went along with what she said but at times in the back of my head I didn't feel right about ignoring it. Kind of like it was my body telling me something or a possible warning. 

 

Finally at about a year I got tired of looking at it and after several hours of non stop looking online the only thing I seen remotely was something called Subungual Melanoma. My fiance did her own research and it's all she could come up with as well. She grew a little worried by now and so did I.

 

Next day I called my local clinic and doctor to get an appointment. I was able to see the doctor about an hour later. So the doctor looked at my index finger nail and was speechless. She said she had no idea in all her years of practice had she seen something like this. I mentioned to her what I found online and she left the room to do some searching. She came back and stated she had no idea and she called making a referral and appointment with a Dermatologist Clinic and Cancer Specialist next town over.

 

I had to wait about a month before I went to see the dermatologist. Once the dermatologist looked at my fingernail she asked if I'd like to have a biopsy done that day or later and of course I chose now. So the dermotologist comes back and ssys she is doing a punch biopsy of my nail and the skin area below the nail which is where melanoma/whatever it is is. She does the punch biopsy and not to much discomfort. 

 

Now I had to wait a couple weeks for the results of my biopsy. If I got a letter in the mail it was benign and if the called me it's malignant. Well today my results came by a phone call. But the RN says the results showed nothing but something is there and we need to figure out the cause of it. She said that this time I will be seeing the head main dermatologist next visit who will performing a deeper biopsy sample of the area. The RN stated they knew it was some type of melanonychia but don't know exactly why or what. So they don't know if it's benign or malignant or nothing. So now I have to do a second biopsy of the same spot and a little deeper. And now i gotta wait another month till my next biopsy. This concerns me a lot and has me extremely worried. My fiance keeps saying things will be alright but that people die young everyday - which this is not very helpful.

 

Can anyone give their thoughts and opinions here? I'd really appreciate it a lot. If you know anything about, anyone who has been through or if you have been through this please let me know more information. I feel lost and kind of like it's a type of cancer that many doctors don't know about. Help please!!!

 

BTW I have recently became a member also of Cancer Compass asking for help and thoughts. The people there have been really nice and I have had a couple replies but I would like to see thoughts and help also from those from melanoma.org site here. Please if you've have had experience, know someone who has or any information please let me know. I have included a couple pics as well of my index finger with the supposed issue. In the photo you will see the light pale brown line near the edge of my nail and you will also see where a recent punch biopsy was performed. As stated above that biopsy came back inconclusive and I have to now go in for a second biopsy which will be deeper. 

I'm a 30 year old white male btw just to give a little idea of my age and race.

I'm very terrified and scared. I have cried almost every day over  and can't imagine dying and leaving my two dogs and two cats. I can't imagine leaving my fiance as well who will not discuss or talk about it all. I have no family to talk to as I was adopted and have not talked with my adopted parents in over 10 years. I don't know my real parents and family so medical history and support is not there. I have no one to really turn to and I'm sorry for asking for help and support. But then again this could all come back benign but from what I've read one benign cases are more common in african american but with caucasian it's very rare and more possibly malignant. Plus the life expectancy is horrible. Help me with information or anything if you can.

Login or register to post replies.

Leslie'sHusband's picture
Replies 5
Last reply 8/14/2014 - 8:31am
Replies by: Leslie'sHusband, Thandster, Anonymous, odonoghue80

Les had her laproscopic lymphadenectomy (left groin) done on April 15th, and the drain was removed in mid-late June.  She is experiencing a burning sensation in her left thigh at the incision area where the drain tube was, mainly when she bends over or squats down.  I have been able to feel a definite temperature difference in her left thigh vs. the right several times since the drain was removed.  She will be emailing the nurse at Duke about this this morning, but I also wanted to see if anyone here has experienced anything similar.  She is due for her next PET/CT in late September. 

Dave

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 8/14/2014 - 5:28am

Can anyone suggest the best melanoma specialist and the best hopital in India?

God bless you

Login or register to post replies.

pigs_sty's picture
Replies 2
Last reply 8/13/2014 - 11:41pm
Replies by: Marianne quinn, eric w

Hi,

My wife has just had second infusion of Ipi and we have noticed increase in WBC and neutrophil, both by approx double. Have other Ipi users seen this, is it linked to a postivie response?

 

 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 7
Last reply 8/13/2014 - 7:27pm
Replies by: CHD, Janner, JerryfromFauq, Anonymous

After early melanoma diagnosed 3 years ago, I’ve had many additional biopsies.  Most have come back as nothing, some mild atypia.  There have been a few over the years where pigment has regrown.  They were normal when biopsied before, and look the same normal again now.  Must they be excised simply because they regrew? 

Login or register to post replies.

kelvin's picture
Replies 4
Last reply 8/13/2014 - 3:33pm
Replies by: kelvin, dodgedh2

Hi I was wondering if anyone can help with a few things,ever since I finishd radiation therapy for my stage 4 melanoma 9months ago I have been so tired I can sleep for days only waking every now and then for a toilet break,and have been having the madest sweats and also freezing cold chills,I have asked docs about it and they aren't sure why,also found 2 new lumps which my g.p dosnt seem to be worried about,should I be worried or am I jst being paranoid,

Login or register to post replies.

mindy h's picture
Replies 10
Last reply 8/13/2014 - 3:17pm
Replies by: RJoeyB, mindy h

my daughter is 22 yrs old stage 4 melanoma. she just went through a trial at nih which compares standard dose chemo for lymphodepletion with low dose. she got the low dose. I was wondering if any out there also got the low dose and how they were doing. we are three weeks out and have not seen any improvement.  thank you.          she already has had IL2 and anti pd1

Login or register to post replies.

rick1981's picture
Replies 5
Last reply 8/13/2014 - 12:47pm

Hello,

I was browsing the ASCO library and found this on immuno therapy...

http://www.ascopost.com/issues/july-25,-2014/intralesional-injections-trigger-immune-responses-in-melanoma.aspx

Could this be the next generation after nivo & pembro?? Seems quite promising. Anyone here participated in any trials?

Best regards, Rick

 

Login or register to post replies.

Maureen038's picture
Replies 6
Last reply 8/13/2014 - 12:13pm
Replies by: kylez, Maureen038, RJoeyB

Bill was allowed three more infusions of nivolumbab instead of being taken off the trial. He argued that because it was a terrible allergy season and his esophills count was so high that that might be a reason his hilar and mediastinal lymph nodes were slightly enlarged.  Scans on Monday showed shrinkage in all of his lymph nodes and his esophills count is still extremely high. He had two percent shrinkage and he has now had ten infusions. On his seventh infusion he developed vitiligo that continues to spread from his face, arms and now legs.

Hear are my questions:

1. Is it possible for the nivolumbab to also be causing the esophills count to be so high because it amps up the immune system?

2. Bill has one lung nodule that continues to grow slowly each scan. It is now 2 cm. Is it more effective to do VATS surgery if after the next scan it grows more or would you use radiation?

Thanks for any advice!!

Maureen

Login or register to post replies.

MattF's picture
Replies 6
Last reply 8/13/2014 - 10:44am

ok guys mulitple bone mets in back and left femur etc.

combo failed last week and we jumped to Yervoy

MRI results from last week scan

 

6 Nodules of Melanoma Metastasis within the breain......all under 20mm in carious loacations

what am I in for when I meet with the Radiation Oncologist?

 

treatment tyes...

etc

 

Matt

Login or register to post replies.

SarahW's picture
Replies 14
Last reply 8/13/2014 - 3:21am

I saw a post earlier this week polling people with NED after treatment of stage IV melanoma. So I thought to ask how many of you out there have stable non-progression of Stage IV  on this drug combo. My husband has been on it since February with stable disease as of July's scans.

Prior to that he was treated with stereotactic brain radiation surgery x 8 brain tumors on two occasions, Vemurafenib alone, and Vemurafenib + XL888(pre-clinical trial drug) and dabrafenib alone.

His energy level and skin color have returned to his pre stage 4 level on the dabrafenib and Mekinist combo

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 8
Last reply 8/12/2014 - 11:49pm

My wife has stage 3 melanoma which has been excised and has had a sentinel removed which was positive. She also had a PET scan and brain MRI which were negative. Her surgeon is proposing a radical lymph dissection of the lymph nodes surrounding the sentinel. Has anyone skipped the lymph node dissection surgery and gone straight to a non surgical solution like interferron? Did this approach work for you?

Login or register to post replies.

jualonso's picture
Replies 6
Last reply 8/12/2014 - 10:58pm

Hi Folks, 

I have been reading since i was diagnosed Stage IV last february and i have the feeling that many people develop brain Mets after fail on Combo,. . 

Whats your opinion?? 

Is there any study about it?

Thanks a lot for your replies

 

Login or register to post replies.

JerryfromFauq's picture
Replies 6
Last reply 8/12/2014 - 10:35pm

www.sciencedaily.com/releases/2013/04/130423135710.htm
Virus kills melanoma in animal model, spares normal cells
Date:  April 23, 2013
Source:     American Society for Microbiology
Researchers from Yale University School of Medicine have demonstrated that vesicular stomatitis virus (VSV) is highly competent at finding, infecting, and killing human melanoma cells, both in vitro and in animal models, while having little propensity to infect non-cancerous cells.

"If it works as well in humans, this could confer a substantial benefit on patients afflicted with this deadly disease," says Anthony van den Pol, a researcher on the study. The research was published online ahead of print in the Journal of Virology.

Most normal cells resist virus infection by activating antiviral processes that protect nearby cells. "The working hypothesis was that since many cancer cells show a deficient ability to withstand virus infection, maybe a fast-acting virus such as VSV would be able to infect and kill cancer cells before the virus was eliminated by the immune system," says van den Pol. And indeed, the virus was able to selectively infect multiple deadly human melanomas that had been implanted in a mouse model, yet showed little infectivity towards normal mouse cells, he says.

Many different mechanisms are involved in innate immunity, the type of immunity that combats viral infection. van den Pol plans to investigate which specific mechanisms are malfunctioning in cancer cells, knowledge that would be hugely beneficial both in understanding how cancer affects immunity, and in enhancing a virus' ability to target cancer cells, he says.

Melanoma is the most deadly skin cancer. Most melanomas are incurable once they have metastasized into the body. The incidence of melanoma has tripled over the last three decades, and it accounts for approximately 75 percent of skin cancer-related deaths.

I'm me, not a statistic. Praying to not be one for years yet.

Login or register to post replies.

Pages