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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sweetaugust's picture
Replies 28
Last reply 10/6/2014 - 9:38am

Hi there,

Just curious on your ages out there....what age were you diagnosed with stage 4 and how old you are now?

I was diagnosed with my primary melanoma (stage 2) at 26 years old, then went stage 4 at 38 years old and now just turned 40.  I'm doing great.  Just wondering how many of you out there are around the same age range? 

Laurie

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cruzinsusan's picture
Replies 2
Last reply 10/6/2014 - 9:14am
Replies by: mary1233, Becky

Sorry to be on here!!  Just dianosed wtih very rare and very grim Oral mucosal melanoma!!

At stage one in sit tu and all pet scan are clear.  There is not much reasearch on this rare meanoma so I am out here looking for anything that can give me more hope!!

Thanks Suz

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kalisama's picture
Replies 12
Last reply 10/5/2014 - 8:35pm

Stage IV, BRAF positive, active mets in brain and breast.

Started on Zelbarof for nearly a year after brain excision and gamma knife. Developed a met in shoulder and was switched to Mek/Taf as soon as it was approved. New mets in brain and in dermal lining of brain, as well as in left breast. Gamma knife has not shown to have worked on brain lesions a month ago.

Monday I begin Ipi with my only goal to get to Keytruda. I have never felt good about Yurvoy option and still do not. I have a colostomy resulting from divriticulitis, which I feel should exclude me from the Ipi prerequisite as clearly I have a sensitive colon.

Merck has refused me off label use of Keytruda, so my only choice is to start Yurvoy. I will be receiving 5 gamma knife treatments on my breast as well, starting after the Ipi infusion Monday and once per day going through Friday.

I'm posting this because I'm scared of Yervoy. Can't say why, it's just a feeling in my gut. If those of you who have done Ipi can share some of your experiences with me that I might find helpful, I'd really appreciate it. I'm somewhat new to this forum but have found nothing but wisdom here, and feel that y'all are the only ones in my world who are not speaking Swahili.

Thank you in advance for your time,
kali

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Rocco's picture
Replies 2
Last reply 10/5/2014 - 11:37am
Replies by: Bubbles, Janner

A dear friend of mine just notifed me her Derm gave her a dx of melanoma in situ.  Very concerned as her brother just recently passed away from mel.  I'm not familiar with in situ and what all tests they'll run on her, etc  Her path info is as follows:

"Malignant melanoma, predominantly insitu, superficial spreading type.  Dept of invasion is 0.29mm, Clark's level II.  Melanoma is in a horizontal growth phase."

Her next step is surgery - assuming to get clear margins, etc..  She has an upcoming consult with Dr. Amod Sarnaik, surgical Onc at Moffit in Tampa. 

 Can anyone chime in on what she should request given the family history and/or what she should expect.  Also any input on Moffit in Tampa and/or Dr. Sarnaik would be appreciated.

Thanks -

Rocco

 

Luke 1:37

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Rocco's picture
Replies 5
Last reply 10/5/2014 - 11:08am

Thanks for the good thoughts and vibes last week.  Amazing how quickly the fear of the unknown came upon me while waiting for the all clear...

Last week I posted that my PCP had suggested I get a CT the neck to look at what appeared to be a small lump under my jaw/neck area.  So went to DFCI in Boston and had my Onc order it up.  Had the scan - it showed nothing (YEAH!), followed it with an ultrasound to be sure - still nothing.  Current thought it is a submadibular gland issue (could be blocked) so I'm off to an ENT specialist to figure it out.  Bottom-line - no mel....<insert deep cleansing breath here>. 

-Rocco, Stage IV since 2005, Ipi responder, NED since 2009

Luke 1:37

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stayhealthy6's picture
Replies 5
Last reply 10/4/2014 - 9:48pm
Replies by: stayhealthy6, Janner

I had a melanoma removed May 2005 it was .45 Clarks level 2. Recently, my wife discovered a reddish zit like bump on my back on 9/10/14 and slowly but gradually it has decreased in size. Also, about a week ago she squeezed the cyst and white pus came out. Now, I went to the Derm 2 days ago and she said it was just a cyst.

So, as a Stage 1A patient from 2005 should I be worried about this cyst? What should I do? Just wait for the body to take care of the cyst on its own? It has slowly but gradually seem to be getting smaller but again as a Melanoma patient I freak out. Is it a worry or just paranoia?

Any thoughts?

Thanks,

J

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gemmy32's picture
Replies 3
Last reply 10/4/2014 - 3:43pm

Hello everyone my mother in law has been diagnosed BRAF neg she has a tumour on her right lower lobe still awaiting her treatment. What's does it really mean BRAF negative am I right in thinking it's slow growing cells. Would surgery be the best option as she only has the one tumour an she had the skin cancer 10 years ago. She has been waiting 7 weeks now for her treatment. 

Thanks 

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Okay now that I am over the rush of blood to my head I am craving information from people's personal experience. Less than three weeks ago I had a biopsy for a mole, three days ago I had a wide margin excision on my right calf and a SNLB. Just got the biopsy report... One node with one "tumor" cell. They are talking about more surgery, but I haven't seen the oncologist yet. That appointment is Wednesday. I am crazy active, freaked by the idea of being laid up in bed for long periods of time. Stories will help.

 

I am a 50 year old female biomedical scientist with stage 3a melanoma.

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Anonymous's picture
Anonymous
Replies 3
Last reply 10/4/2014 - 9:54am
Replies by: kalisama, Teochasse, Anonymous

I am extremely itchy in my groin area and on my hands. I have bad sweats night and day, when I am not sweating I am freezing, constant severe headaches and a dull aching pain in the upper part of my stomach. Just wondering if anyone else has these symptoms also? Wondering if these symptoms are common with melanoma, or maybe it's something else? Thanks in advance for any imput!

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Twistermom3's picture
Replies 1
Last reply 10/4/2014 - 9:43am
Replies by: Janner

So here's where I am. At my regular check up last month I asked my GP about a change in a mole on my face that had developed a small dark spot. She also noticed one on my back and sent me to a dermatologist. The dermatologist stated that there were actually two on my back she thought questionable and she recommended a biopsy on those before removing anything on my face. One was fairly small and she removed the entire mole and the biopsy for that came back as abnormal, not melonoma. The second was larger and she removed only part for biopsy. That one came back as melonoma in situ. I go back next week to have the entire mole removed and to re-evaluate the one on my face. 

I"m not even sure what to ask now. Was it a mistake not to remove the entire larger mole the first time? Too late to change it now, but I don't want to make things worse. If the one on my face also comes back as a melanoma does that mean by definition it has spread?

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lidiapeters's picture
Replies 2
Last reply 10/4/2014 - 12:32am
Replies by: Janner, arthurjedi007

In the beginning of 2013 I went to my doctor with concerns about a pea sized lump on my upper right chest. I had noticed it a few months before and had kept an eye on it as my parents have both had  skin cancer, and my entire family has red hair, fair skin, and countless bad burns over the years. My lump had no colour, but after about 3 months it grew a red coloured like mole on it....my doctor booked me an appointment with a dermatologist. Took a while to get in to see him as we only have 3 dermatologists in our area, anyways as soon as he looked at my lump with his scope, he told me it looked like melanoma and then he froze it, told me I would need to come back for a shave biopsey. A month later he did the shave biopsey and told me to come back in a month for the results. When I went back for my results he told me it was not cancerous but he told me he saved my life that day?? He said he did not get the entire lump and it had to come out because it had the potential to change very quickly so he was sending me to a plastic surgeon for a wide excision.The plastic surgeon's office called me the next day and the day after that I was at the hospital for my wide excision. I asked for a copy of my pathology report, that is when I found this site and posted (My Pathology report word for word, What does it mean? 9/16/2013)

TISSUE SUBMITTED

1 shave/ excisional biopsy, right chest

GROSS DESCRIPTION

SCO one piece of shave/ excisional biopsy tissue from the right chest measuring 0.8 x 0.6 x 0.1cm

the specimen is trisected and all tissue embedded.

MICROSCOPIC DESCRIPTION

Multiple serial sections of the submitted skin biopsy sample have been examined. There is a somewhat asymmetrical 4 to 5 mm diameter melanocytic lesion in the center of the skin surface. Most of the S-100 protein positive nevus cells are seen in the dermis and there is associated marked lymphocytic infiltrate suggesting some degree of regression. A few junctional nests are noted. These are epithelloid cells with larger nuclei and nucleoli. Biopsy findings suggest the so called Spark's nevus (ie, nevus with features of Spitz nevus and Clarks nevus). Considering older age and histological atypia with some dermal nevus cells present at the dermal margin focally, conservative re-excision of the lesional area recommended.

DIAGNOSIS

SHAVE/EXCISIONAL BIOPSY, RIGHT CHEST; ATYPICAL SPITZ NEVUS; CONSERVATIVE RE-EXCISION OF LESIONAL AREA RECOMMENDED

 

. The plastic surgeon told me my lump was childhood melanoma, which he said isn't really melanoma at all and is completely safe. I went back for my second pathology report on my wide excision and he told me the margins were clean and there was nothing to worry about. Which brings me to today... I have another spot which looks like the first lump, but it is smaller, it is a couple inches from the scar of my excision, my doctor has told me to keep an eye on it for change. I have been so sick since just after my wide excision and everything my doctor has been doing for me has not helped and I am wondering if my physical symptoms have anything to do with these lumps? I have low blood count and low iron, I am always cold or sweating, aches and pains, itchy in my groin area and hands that keeps me up at night, constant severe headaches,  I feel like my brain is in a fog just cant think properly and I am so beyond exhausted all the time it is really affecting my daily life.....I am a different person than I was 2 years ago. I am at my wits end and so frustrated. Is it possible I was misdiagnosed? Do clean margins means its over and done with, nothing to worry about? I am 48 years old!! How often is someone my age diagnosed with childhood melanoma? I was recommended to get a second opinion on my first pathology report because of my age but opted to wait on my second report as I had posted just a day before getting those results... that my margins were clean, thought I had nothing to worry about but now am wondering with how I have been feeling for so long? Also in my pathology report where it says 'associated marked lymphocitic infiltrate' Does anyone know what exactly that means?

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Jewel's picture
Replies 3
Last reply 10/4/2014 - 12:17am
Replies by: Janner, Squash, Teochasse

My husband had a clnd in his left groin in 2011. His lastest scan is showing a hot node in his pelvis. If this turns out to be melanoma would that take him from stage 3 to 4? We find out Monday.

Thank you

Jewel

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JoshF's picture
Replies 3
Last reply 10/3/2014 - 8:39pm

So got preliminary scan results...there was some "fuzziness" in right lung but my oncolgist said it wasn't concerning for malignancy as lung nodules don't present themselves in that manner. Not to mention that I was on a Z Pack for sinus related issues last week. I was told that this is not uncommon in what they see in scans because basically you "see everything". Any thoughts?

Still has me nervous but things can always be worse...so I won't complain much. Bloodwork amd everything else was normal...thyroid meds are finally working after ipi took that out last winter. Overall feeling good and praying to remain NED and that many others join the ranks of NED....praying for you all!

 

Josh

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

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