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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MacMac's picture
Replies 5
Last reply 9/3/2014 - 11:28pm
Replies by: Lil0909, MacMac, Anonymous

I just received my surgery date for the WLE and SNLD (September 12).  When I spoke to my Dr he indicated that I would be having a lymphoscintigraphy the day of the surgery.  I received a phone call from his surgery coordinator and she indicated that my Dr. ordered a lymphoscintigraphy to be conducted 5-7 days before my surgery (in addition to the one the day of).  I have an appointment with him for a pre-op on Monday (he is out of the country).  Do any of you know the reason for having two of these procedures and why 5-7 days before?  Thanks!

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cavsnut's picture
Replies 7
Last reply 9/3/2014 - 11:16pm

I got my results back from my SLNB today and one of the lymph nodes out of the four taken out was positive.. believe it was .9mm..So with that said opinions on getting the superficial nodes removed or going with ultrasound monitoring of the nodes until anything else shows up? I'm really leaning on not having anymore nodes removed at this time as I work standing for 10/12 hours a day. I know the side effects of having more lymph nodes removed from the groin is extemely high and with it showing up in only one of the four removed believe I'll play the 80% odds of it not being in anymore...thoughts?

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cavsnut's picture
Replies 3
Last reply 9/3/2014 - 11:11pm
Replies by: cavsnut, Bubbles, SABKLYN

I developed a seroma from what I've researched in one of my groin excisions from surgery last Tuesday where 2 lymph nodes were removed. Is this something I should contact my doctor about, or will it go away eventually? It's about the size of a Ping pong ball btw

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logogriph's picture
Replies 2
Last reply 9/3/2014 - 8:18pm
Replies by: logogriph, Janner

My family has a somewhat distant history of melanoma (grand-relatives and some cousins). I'm 21 and I'm going to the dermatologist next week to get a flaky and generally abnormal birthmark looked at (and hopefully biopsied), and since I've never done this before I have some questions and concerns that I'd be really, really grateful if anyone could answer.

Right now, I'm trying not to think too far ahead and scare myself, so my only questions are about costs and procedures right now. I don't have insurance, and I don't have a lot of funds to spare at all. It's taken me months to scrap together enough just to cover the 110$ office visit fee. I know for sure I want my birthmark biopsied, but I also have a small (about 2-3mm) atypical nodular mole on my abdomen that I might want biopsied too. So, I want to ask how much a biopsy would cost? And would I have to pay this fee or any portion of it upfront? Will I be restricted to only certain biopsy types, like shave? If a doctor doesn't think a mole should be biopsied, will they generally refuse to do it or will they agree for my peace of mind? Will I be given any anaesthia for a biopsy?

I know the costs probably vary from clinic to clinic, but any kind of information could help really.

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Cathy's picture
Replies 11
Last reply 9/3/2014 - 3:31pm

My world fell apart last week when I found out I have anal melanoma.   My colorectal surgeon ordered a PET scan and a CT, both of which I've completed.  We met last night with the multidisciplinary team at our local hospital's cancer center.  

I am so fortunate to find out that it has not spread, and I need to have a wide local excision to get clean margins.   I talked to my doctor today and she said she may possibly need to remove part of the sphincter muscle which would cause me to need a bag for the rest of my life.  I really want a second opinion, but there's not alot of specialists in this type cancer.   Surgery is scheduled for February 7.

Also, the PET scan showed a spot in the pelvic area that may or may not be the cancer in the lumph node, but the CT did not show it.  They said that if it was definitely the cancer both tests would show it.  It could just be a false positive.  Could be just part of the bowel   I will need to go back for another CT in 3 months to watch it.  

Anyone know of any specialists on the east coast?  I live in Delaware but will travel to where ever.   Johns Hopkins can't see me until February 25.   University of Pennsylvania's melanoma center referred me to a dermatologist.   I've heard about the Dana Farber center in Boston, and I have no problem flying  up there for a consult, but February 7 will be here soon.   I don't want to put off surgery as I know that this type of cancer is very aggressive.  

Anybody out there have any advice for me?  I just want to scream because I am so afraid and confused. Thanks for your help!!

Cathy

 

 

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Anonymous's picture
Anonymous
Replies 11
Last reply 9/3/2014 - 4:46am

My mom is starting MK-3475 on Tuesday after no success with Yervoy.

Matted nodes removed mid-February 2014. They had to leave a small piece on her vein so as no to compromise the vein/leg.

Lymphodema of her leg and extreme swelling of her abdomen. Fatigue, sleep deprived, can't get comfy, swollen stomach causing loss of appetite and nausea. Scan Last Friday shows cancer moved to nodes in stomach, hence the fluid in her belly. Brain scan negative.

Starting MK-3475 on Tuesday. I'm not sure what to expect.

Doctor stated that if she waited and gave the Yervoy more time to work that she could find herself bed ridden with organ failure in a couple short weeks. This seems to be her only chance.

I can't seem to find anything definitive on what her chances are with this trial drug. It's now an expanded access protocol, so we do know that she won't get the placebo.

Does anyone know where I can find anything that outlines the effectiveness of MK-3475? I know there is no black-and-white here, but I just need something, anything, at this point.

We are all a mess. Worst nightmare. There is no other way to say it. Watching the most important person in your life go through something like this is beyond heartbreaking. Watching my parents cope with it, together, is beautiful and also so incredibly sad. My mom is such an amazingly strong and profound life force to SO many people. I am still in denial and coping - if you can call it that - poorly. I don't even know where to begin.

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liam1209's picture
Replies 13
Last reply 9/3/2014 - 4:41am
Replies by: Annalive, RJoeyB, hbecker, Mat, liam1209, Ed Williams, Anonymous

After seeing Dr. Steven O'Day at BH cancer center and Dr. Wong at USC here is where we are:

Would love to hear your thoughts on treatment options and/ or clinicla trials you would suggest. BRAF test negative 

In July of 2013 a nevus/nevi was removed from the crown of patient’s head and pathology was negative for melanoma

In February of 2014 patient experienced swollen lymph nodes neck and armpits patient thought due to contact dermatitis and generally “feeling poor” for a few days.

Lymph node on left neck behind and below ear remained swollen.  After consults and CT lymph node surgically removed June 18.  Results on July 21of immunochem analysis were for metastic melanoma (MM)

Aug 4 CT indicates two small nodules (about 1 cm) in lungs

Aug 18 cerebral MRI negative and PET/CT indicates only the two nodules in lungs.  Decision on needle biopsy of lung nodules pending

Patient has definite Stage III and probable Stage IV metastic melanoma with unknown (suspected July 13 pathology report in error) primary origin.

Recommended treatment options:

1.       FDA approved Interleukin-2 or IL-2 (requiring hospitalization) possible severe reactions during treatment but post-treatment side effects.  Understand low (10%) “cure” rate

2.       FDA approved  Ipililimumab  or Yervoy (outpatient with supervision) possible reactions and side effects before and after treatment. Understand moderate (30%) “cure” rate

3.       PD-1 which is expected to be approved in October by the FDA (outpatient with supervision) possible reactions and side effects before and after treatment but fewer than #2.  Understand good (65%) cure rate and works well with MM lung tumors.

4.       Clinical trials

 

Cheers 

Liam

Liam 

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Happy_girl's picture
Replies 4
Last reply 9/3/2014 - 12:45am

Hi everyone!  I just recently ( last Thursday) had a clnd under my left arm.  The had found a few micro melanoma cells in the sentinal node- so had the clnd.  I was curious what your recovery was like... Length-time- range of motion- weight limits with holding objects.  It's been hard because I haven't really been able to pick up my 7 month old for almost a week.  Also- it's so hard not to be scared and discouraged.  I'm praying that this surgery takes care of any would be melanoma left. Thanks for your thoughts!  

Also- does it sem like there will be more options than interferon for 3a soon?  I keep hoping that some of these promising new drugs will filter to 3a soon.

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jualonso's picture
Replies 3
Last reply 9/2/2014 - 10:03pm
Replies by: Bubbles, jualonso

Hi friends, 

i would like to ask for an advice from you, now i have to take my first important decision, Today my PET/SCAN has revealed Progression on COMBO BRAF INH. then i have to go one step forwards.

In this moment what i have available is Ipilimumab, because EAP of pembro is just after fail ipi.

Other Option could be wait a little to see clinical trials i can do it, Im in Spain and nothing interesting is available at the moment.

I have decided with my doc because just a new spot is in my lungs but other are still missing that we are going to continue with the braf inh, till i decide what to do next. I have low Tumor burden so far.

I would really apreciate your advices

Jualonso

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Anonymous's picture
Anonymous
Replies 3
Last reply 9/2/2014 - 9:19pm
Replies by: JoshF, RJoeyB, mwcollins

I'm stage 4 and since May I've had slight neck pain. Many of you a familiar with being hyper-sensitive but I think it's always better to err on the side of caution. It's nothing excruciating and some days no pain at all. I'm not sure if it pillows...I've been using newer foam pillows...my wife stopped because it hurt her neck. I also tweaked my neck good years ago in Marine Corp. I wasn't real kind to my body when I was younger. Anyway, thoughts from anyone who can tell me what a met to spine or bone feels like? I have scans Oct 3rd....yes getting nervous!!!

Josh

Let's work for better treatments....for a cure!!!!

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theresar's picture
Replies 2
Last reply 9/2/2014 - 4:55pm
Replies by: RJoeyB, BrianP

I frequently read on these posts people talking about their tumor burden or tumor load. What exactly does that mean? Does it have have anything to do with the LDH factor or some other lab tests or just the number of tumors one has.

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mwcollins's picture
Replies 2
Last reply 9/2/2014 - 4:51pm
Replies by: BrianP, RJoeyB

Hi all! Kevin & I have been quiet for a while since his last surgery and scans. Stage 4, but NED. Lately he has been having some mild discomfort in his belly on the opposite side of where he had his small bowel resection. He thought he might have tweeked it at the gym, but it just won't go away. As I know you are all keenly aware of being hyper sensitive to anything out of the ordinary, he is at the doctors. I am so praying for it to be nothing, but can't rule anything out either. Please keep Kevin in your thoughts and prayers. Thanks!

Megan

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Anonymous's picture
Anonymous
Replies 5
Last reply 9/2/2014 - 3:38pm
Replies by: Anonymous, Janner

Hi, everyone.

My husband, age 72, had a melanoma removed in May with wide excision. At the time, the plastic surgeon said that for the most part the margins were clear but one cell remained.

Recently, small, pink bumps have been coming up on his scalp. He says they hurt when he presses on them. 

He is supposed to have an appointment soon with his dermatologist. I am going to go into the appointment with him because he doesn't hear well and I have some questions.

We haven't been given a pathology report - is that typical? So I know nothing other than that my husband said the dermotologist told him this was the 'best' kind (husband's interpretation) to have. However, the plastic surgeon, whom my husband knew professionally, asked him, "You do understand that this is cancer?" and told him it was malignant melanoma.

Any thoughts are most welcome!

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Anonymous's picture
Replies 7
Last reply 9/2/2014 - 3:18pm

My husband will start pembrolizumab next week, after having had Yervoy with no results, and disease progression during the Yervoy treatment period.  What I'm looking for is some GOOD news from those folks who have had (blessedly) good results with the pembrolizumab.  Let me hear it!

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