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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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? 

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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

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JerryfromFauq's picture
Replies 1
Last reply 8/12/2014 - 3:51pm
Replies by: AnitaLoree

Aspirin has long been known to have cancer prevention effects, but it has not been widely used for this because of concerns about potential harm. Experts have now declared, for the first time, that the benefits of taking aspirin to prevent some types of cancer outweigh the harms. This conclusion comes from a review published online August 6 in the Annals of Oncology. [Daily aspirin is] the most important thing we can do to reduce cancer after stopping smoking and reducing obesity. "Whilst there are some serious side effects that can't be ignored, taking aspirin daily looks to be the most important thing we can do to reduce cancer after stopping smoking and reducing obesity, and will probably be much easier to implement," first author Jack Cuzick, PhD, head of the Centre for Cancer Prevention at Queen Mary's University of London in the United Kingdom, in a press release.-------------------------------------------- ---------http://www.medscape.com/viewarticle/829484

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

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Brigitte's picture
Replies 2
Last reply 8/10/2014 - 10:25pm
Replies by: Brigitte, Janner

On tuesday I go get a conservative excision on my upper back for a atypical mole. . I 'm not worried about getting it done but I was wondering about the post op and the healing time.  The only problem with my shave biopsy was the itching.  Sense I will have stiches will I be able to sleep on my back? Will I be able to go to the gym? How long does it take to heal? My shave biopsy took about 2 weeks to heal (where I felt comfortable not putting  vasaline and a bandage on it).  The shave biopsy was done almost 3 weeks ago and its still pink and sometimes itches. I was just wondering if the healing time for the conservative excision will be a whole  lot longer. Im almost thinking of asking my docter to do a wide excision so I know the margins are clear and I dont have to go back and do this again. 

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liam1209's picture
Replies 11
Last reply 8/12/2014 - 1:42am
Replies by: liam1209, DZnDef, Anonymous, Patina, SABKLYN, arthurjedi007, kylez

My 61 year old father was just diagnosed with malignant melanoma. I'm basically trying to find the best melanoma cancer specialist/ hospital in the US or world to treat my dad's cancer.  Would love to know your suggestions. 

More details below:

He is currently abroad and all these tests took place abroad.  I am trying to identify who would be best doctor/ hospital in the US or world  to review his case to date after he gets MRI and PET results next week. I live in Los Angeles and he could stay with me if there is a great hospital near me. He also has family in Seattle.  But in general location is not a problem we are just trying to find best care.  

General oncologist recommended he see a Melanoma specialist.

Symptoms summary:
1. Had swollen lymph node from Feb-June 2014.
2. Lymph node removed via surgery (left side of neck behind and below ear) on
June 18, 2014.
3. On July 21 pathology report from lymph node received malignant melanoma
(Immunochemical testing in USA results: Malignant melanoma
(S100+/SOX10+/NKIC3+/MiTF few+), spindle cell type involving lymph nodes).
4. Still unknown where melanoma originated (possibly from July 2013 nevus but
pathology negative for melanoma) but dermatologist finds no evidence on skin
on July 23.
5. Aug 4, 2014: CT’s (cat scans) of thorax, abdomen and pelvis show two
small (about 1 cm) nodules in lungs and Oncologist recommends PET CT to see
if these are related to malignant melonoma.
6. Cerebral MRI pending (scheduled to take place on Tuesday, August 12th)

**no other symptoms, all blood work good, feels great, no skin or retinal
melanomas evident.

 

Thanks so much!!! 

Liam 

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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.

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Ginger8888's picture
Replies 3
Last reply 8/10/2014 - 1:41am

I have a question...I did the 30 day HD interferon back in April and a week after my treatment ended they did a ct scan..My question is, how soon after finishing interferon did you have a ct scan done?..The reason for me asking is that i am doing my last infusion of yervoy wed and not sure when i will have scans after that because the yervoy is slow acting..Was just wondering if interferon is a little like yervoy or if it's instant results? They found one very small spot in each lung in the ct scan right after interferon, they were there before treatment but lit up a little more after interferon..They were to small to biopsy..

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Mjp's picture
Replies 10
Last reply 8/10/2014 - 12:53pm

I had a mole biopsied last week and my doctor said it is malignant melanoma. When he called with the news I was in shock, and didn't ask any questions. If anyone here can provide me with and advice or information I'd appreciate it. My doctor is gone for this next week so I can't reach him now. 

 

My doctor said that they "got all the melanoma out" during the biopsy and the surgery to remove the surrounding tissue is just a precaution. I'm confused because the entire mole wasn't removed during the shave biopsy, so how do they know they got all of it?

 

What is the surgery like, will I be back to normal the following day? The mole is on my stomach. 

 

I'm 30 years old. I have not been taking care of myself- I don't exercise and I'm not on any kind of a diet. This has scared the hell out of me. I'm going to make changes and be as healthy as I possibly can be. I have so many other moles on my body and I know this is going to happen again. Doctor wants to see me every 3-6 months to biopsy the two worst moles each time and take it from there. I did this to myself, I'm fair skinned with blue eyes and red hair, I used tanning beds regularly in high school and never wore sun screen outdoors. Are there any vitamins I should take, or anything I should avoid? Same with foods, anything that would help? I know it can't prevent cancer, but I feel like I need to do something to help myself. 

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5dives's picture
Replies 7
Last reply 8/9/2014 - 11:32pm

Hello all,

I have some weird lab results, and I was hoping you might help me figure out if my anxiety has basis in reality.

I'll try and make it short! Please feel free to skim!

WLE / SLNB on 7/10 for a .81 lesion, mitotic rate 1, Clark's IV. Surgery went beautifully, easy recovery. Surgeon went on vacation for 3 weeks. 

Follow up visit with PA on 7/15 who told me my node was "trace positive and I needed brain can, etc. i freakes iut. Got a call 6 hours later that another stain had been tun, and the node was actually negative. This report came from the Gottlieb Medical Center, which is part of the Loyola complex in Chicago.

I requested a second opinion from the melanoma expert in the Loyola lab. Her report came back that the node was negative.

I cannot (CANNOT) shake the idea that my node was positive. 

I asked the surgical oncologist if there would be any benefit to running any scans. He said the scans would be mathmatically more likely to turn up false positives at this point, leading to unnecessary biopsies than they would be to find "real" melanoma. 

He has sent me for an appointment with Dr. Joe Clark on 9/2.  Dr. Clark has an excellent reputation, and I have confidence in him, although I haven't met him. 

Can anybody give me any guidance as to what I should be hoping happens next? I can't shake the idea that I need more information, but I recognize the possibility that this is nothing more than anxiety on my part. 

If I DO have active disease, I want to be treated by Dr. Joe Clark, but right now I'm a little uncertain about my choice. 

Thoughts? 

Thank you! 

Elaine

http://melanomadame.blogspot.com/

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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.

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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

 

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Annalive's picture
Replies 1
Last reply 8/9/2014 - 12:24pm
Replies by: arthurjedi007

Hello All,

I recently had a surgery for metastatic tumor near L4-L5 spine.  Because of close proximity to spinal nerve root, doctors ended up doing a partial ressection.  They are now suggesting that I do 3 doses of high dose Stereotactic Radiation to rid body of remaining cells at that site.  Recent PET showed no new sites of disease. There is still some risk of nerve damage.  I have never done radiation and am wondering if anyone has experience with this type of treatment? outcomes? side effects?  Thank You,  Ann 

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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

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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?

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