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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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 5
Last reply 8/29/2014 - 10:07am

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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rick1981's picture
Replies 0

One more topic from me this morning :)

I know QUACKERY isn't really appreciated on these pages, and many of the alternative treatments I've found on the web are labelled as just that on sites like cancer.gov. However, the only one so far where cancer.gov but also Sloan Kettering are actually fairly positive about is Zyflamend (called Zyflamax in Europe). It's a mix of tumeric/curcuma and 9 other herbs/spices and Sloan Kettering has actually conducted several studies on it - surprisingly. They now say "Zyflamend may have additive effects" to chemo. And there is a recent article on melanoma as well: http://www.agt-info.org/Documents/2014%20Annual%20Meeting/HANDOUT%20Yo%20-%20Student%20Research%20Award.pdf

Anyone here with experience using this for melanoma?I didn't come up in the search.

 

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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

 

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Hey everyone. I just got my radiology report from a CT I had done on Wednesday. Good news is that the tumor in my upper left axila (lymph node) has shrunk from 3.3cm to 2.2cm from with yervoy or radiation or both. Bad news is there is a 5.4cm platelike mass in the apex of my left lung. The notes say it can either be signs of matastasis or it may be caused by the radiation done to my upper left axila above my lung. Has anyone had experience with a mass or imflination of the lung from radiation? I am nervous but meet with Onc tomorrow to go over results. 

Philippians 4:13 "I can do all things through Christ who strenghtens me"

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Insight, Analysis & Opinion

Discerning the importance of Merck's pembrolizumab likely becoming the first PD-1 therapy to reach the market in the US is challenging. From a sentiment perspective, a confirmed PDUFA date for October 28 has helped to drive conviction among Merck's investors that the company has gained ground on Bristol-Myers Squibb, which 12 months ago appeared to have a more discernible lead in this particular race.

From a commercial perspective, the data generated for pembrolizumab suggests that once approval for Yervoy-refractory (i.e. second-line) melanoma occurs, there will be earlier usage of the product in the treatment paradigm. Indeed, when FirstWord polled 70 US-based oncologists after the ASCO annual meeting in May, they suggested that based on currently-available data they would prescribe pembrolizumab to around a third of first-line patients in an off-label capacity – a trend that could be enhanced if Merck's drug also receives NCCN guideline support.

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ABELL's picture
Replies 16
Last reply 8/16/2014 - 12:59pm

Hello,

My best friend, co-worker, second mother, all of the above has been diagnosed with Stage IV. First diagsosis was about 8 years ago, removed melanoma on neck, no radiation needed.

Recurrence happened in 11/13. Same spot on neck, this time it had spread to some lymph nodes. They removed the tumor, some muscle, partial thyroidectomy & some lymph nodes.

After surgery and radiation, PET scan showed NED.

6 month PET scan was scheduled for 7/26- day after my wedding. She went to scan appointment and was scheduled to hear the results by the next tuesday.

Monday night after work, she said she didn't feel well. Nauseous. She had a seizure about 9:30pm and was rushed to emergency.

They did a CT scan (she hit her head, needed stiched and had slight concussion).

The melanoma had metastasized to her brain, 2 tumors in her frontal lobe, her spine, liver and lung.

IN 6 MONTHS!?!?!

They are doing radiation to her spine, Cyberknife to her brain & I believe biochemotherepy for her liver & lung. She is on steriods & anti-anxiety meds. They told her she has a year.

Anyone familiar with this? I have been obsessed with the internet finding horrible stories & statistics. NO CURE, POOR QUALITY OF LIFE, LIFE EXPECTANCYS OF 2-4 MONTHS!!!!!

Life is upside down, how do you get past the gloom and doom & look for a light at the end of the tunnel for her?

Any stories, suggestions & help would be appreciated. Thank you!

~A

 

 

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ashleyelizabeth's picture
Replies 2
Last reply 8/9/2014 - 11:30pm
Replies by: JerryfromFauq, Janner

I recently joined this blog when I was told by my GP that I had Melanoma.  I jumped to every conclusion in the book because I have a history of Anxiety and a little Hypochindriac. Since being told about the Melanoma I have started t feel sick have a cough and swolen neck/glands.  Of course I am not a doctor but my family says it's because since I was told the news I have been online reading everyone's stories and stressing about every little mark and mole on my body.  I met with my GP after the weekend and asked a bunch of questions (depth, stage of cancer, next steps, etc).  Most she didn't know but I did request a copy of my histopathology report.  The diagnosis say "MELANOMA IN SITU".  My doctor says she car say for sure it's spread bit she doesn't think so.  She also said she was thinking about sending me for a CT but said she would leave that up to the plastic surgeon.  I am still waiting to be referred to a plastic surgeon as well as a dermatologist so he can examine the rest of my moles.  

What I am wondering is, should I get a second opnion? Could the diagnosis be wrong and it's worse? I am also pan acing about all my other moles and marks.  I am convinced there are more.  The mole I had removed was VERY obvious (black, then light, slightly raised, odly shaped), none that I have now look like that but I still worry.

Thanks for your help! I am sorry for all the questions but I was just told a week ago today :(

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Anonymous's picture
Replies 9
Last reply 8/11/2014 - 2:04am

Hi!

A friend of mine aged about 60 years has been diagnosed with Melanoma Left Heel with left Inguino Pelvic. She underwent a surgery  which was wide local excision of Heel Lesion with superficial and Deep Ingunial Block Dissection with Left Pelvic Lymphnode Dissection with Heel Defect Reconstruction with Medial Plantar Flap.

Post surgery, doctor has kept her under observation with regular CT scans and blood tests on a 6 week basis with no other treatment of chemotheraphy, radiation therpahy or interferons. I am a bit concerned if this is alright as how will the spread contain without treatment.

Can anyone please advice. Also what all food intake can help contain the spread.

Look forward.

Best

 

God bless you

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emily_f's picture
Replies 7
Last reply 8/9/2014 - 1:31pm
Replies by: Treadlightly, BrianP, madhatter84, Anonymous, tschmith, DZnDef

I recently had an early melanoma removed from my arm with clear margins. I will now have check ups every three months. I am wondering if any of you have advice/information on how to boost my immune system?  I can't help but think there could be an underlying problem within my body that allowed melanoma to develop. Thoughts? Strategies?

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/7/2014 - 7:25am
Replies by: Ginger8888, Anonymous

People with moderate-to-severe Vitamin D deficiencies are significantly more likely to develop Alzheimer's disease or other forms of dementia 

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