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 1
Last reply 7/16/2018 - 2:32am
Replies by: Anonymous

https://www.youtube.com/watch?v=SV4epXiKgrM

 

This is interesting. Dont know if you guys have notice that movie before.

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brianm's picture
Replies 1
Last reply 7/16/2018 - 8:37am
Replies by: JuTMSY4

Hi,

I've had great response to my stage 4 mel.   Al I have left is a 4cm mass in my lung and a very shallow bump on my kidney.  They did a pet scan and the 4mm mass had an SUV of 4.5.   So here is my quesiton.

 

The 4cm mass used to be over 15 cm and have an SUV of 12.5 and greater.

 

Have any of you had large tumors that melted away but left some structure?   Does it always show up as active on the pet scan?

 

I'm only 7 months into my treatment, but it saved my life....

Thx,

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Winterrothj's picture
Replies 1
Last reply 7/15/2018 - 7:59pm
Replies by: Bubbles

Well I just had surgery on the 22 June 1 spot on my middle right lung and 1 on the lower right lung it came back as melanoma cancer but have no other areas on my body that have cancer pet scans show nothing and dermatology can't find any skin cancer. Don't know what to think, never smoked or no drugs clean lifestyle.

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peterjohnk's picture
Replies 3
Last reply 7/16/2018 - 8:34am
Replies by: JuTMSY4, peterjohnk, brianm

Brand new to the forum.  I have minor chest pain thats months old also with cold-like symtoms.  Does anybody have experience with this before they were diagnosed w/ stage 4?

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Anonymous's picture
Anonymous
Replies 3
Last reply 7/15/2018 - 4:17pm

In October of 2017, I found a lump in my groin. It was removed, biopsied and diagnosed as malignant melanoma. More extensive surgery (the groin is an awkward place to have surgery!) removed a chunk of me with nine lymph nodes and four had melanoma. But 5 were OK!! I was tested - PET, MRI. CT and physical exam. They can't find anything, so my diagnosis is "melanoma of unknown origin" which is supposedly quite rare. Anyone out there have this?

I'm being treated with nivolumab (Opdivo) -monthly infusions, and to date I am experiencing very few side effects. I did end up with mild lymphodema of the left leg, but I don't even wear a compression stocking. At the six month mark, the doctor ordered CT of chest, abdomen and pelvis and all was well.

So much is unknown. I am afraid it is elsewhere and afraid it will come back. Most of the time I go about my business and kind of forget I have this. I had breast cancer in 2000, and in 2007 I had a totally different kind of cancer in the other breast. So, this is my third cancer. Enough already! Please pray for me. I want to attend my grandsons' weddings. They are 10 and 7 years old.

Ginny Richardson

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Roxanne218's picture
Replies 13
Last reply 7/16/2018 - 10:59am

Senator John McCain was diagnosed with melanoma in his past - did you know? He had 4 of them excised, one being more serious at 2.2 mm depth. He had the SLNB for this which turned out negative. I was wondering who else here with 2.2 mm or deeper has had negative node biopsies. Mine was 2.6 mm and non-ulcerated, but I opted for no SLNB for personal and educated reasons. Curious...

Roxanne

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Anonymous's picture
Anonymous
Replies 5
Last reply 7/14/2018 - 6:33pm
Replies by: Bubbles, ed williams, jennunicorn, Anonymous

Hello. Im F 25 and I was just looking for some advice. I developed a new mark on the tip of my toe atleast a year+ ago (I cant remember when exactly I first noticed it). It didnt seem to change until I picked at it thinking it could be a pen mark and formed a wound. Since its healed it seems to have increased in size. I spoke to several derms online and visited my gp and a derm in person, all of which have said it is fine. My concern is - can Melanoma often be missed using the dermascope? I have health anxiety so have spent alot of my time reading up on acral melanoma and I know how dangerous it is. I also read that new marks, ones which had changed or those over 7mm should be excised regardless of dermascope findings. Mine is all of those. It doesnt seem to be actively changing now which brings me to my other question - would Melanoma constantly evolve? Or does it reach a point where it can extend under the skin while the surface isnt changing as much anymore. 

Thanks so much in advance. Just wanting some other perspectives as I cant always trust my own opinions due to the anxiety :( I was going to ask for it remove for peace of mind but she didn’t want to due to the location and risk of morbidity. 

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iskitwo's picture
Replies 8
Last reply 7/16/2018 - 12:58pm

I have had 2 months of Nivo and did scan last week. I got the results this week and no new mets and currents spots are almost gone!! Side affects have been very minimal so far and praying it stays that way.

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/13/2018 - 9:30am
Replies by: Treadlightly

Hi,

I am new to this. I had a biopsy for a mole on my big toe about a month ago. I have a family history of melonoma and have always been careful to stay out of the sun and use sunscreen.The path report came back 

FINAL PATHOLOGIC DIAGNOSIS
SKIN, LEFT FIRST TOE, PUNCH BIOPSY: 
-ATYPICAL JUNCTIONAL MELANOCYTIC PROLIFERATION, SUSPICIOUS FOR
MELANOMA IN SITU, FOCALLY
TRANSECTED LATERALLY (SEE COMMENT) 
-REEXCISION IS ADVISED

NUPOOR ANANT GAJJAR M.D.
** Report Electronically Signed by NAG **
Comment
The clinical images from 7/2017 are reviewed but recent clinical
images are not available for evaluation. The lesion is atypical
given the irregular distribution along the junction (despite the
location being an acral site) and there is suspicion for melanoma
in situ. Therefore, reexcision (with melanoma in situ-type margins)
is advised to ensure complete removal of the entire lesion.
Clinical correlation is advised.

Consensus diagnosis: Dr. Jessica Chan

Mic roscopic Description
Sections demonstrate a thick stratum corneum consistent with acral
skin overlying a lentiginous junctional proliferation of
melanocytes. Immunoperoxidase stains Sox-10 and Melan A highlight
melanocytes and show patchy irregular distribution along the
junction with melanocytes focally transected at a peripheral edge of the biopsy

What does focally transected laterally at the peripheral edge mean? was the 

Does it mean there could be more atypical or melonoma cells past the peripheral edge?

I am having surgery next week with the 1/2 cm margins.  I am very anxious. I know the success rate is very good if caught early enough.  I appreciate all the knowledge and support this bulletin board offers.

I wish this had been around when my mom had melanoma.

Thank you for your support

 

 

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Anonymous's picture
Anonymous
Replies 0

Hello,

I had two moles removed via a shave biopsy.

Mole A: Irritated acral junctional nevus with slight atypia

Mole B: Irritated compound dysplastic nevus with slight atypia

I will need an excision on mole A because there was some still remaining at the base (no clear margins).

Thank you in advance!

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Bobman's picture
Replies 1
Last reply 7/13/2018 - 1:12pm
Replies by: Bubbles

Greetings from the rock with rivers of fire! I hope everyone is well,always. 

Got the results of 4 biopsies on Tuesday.  The two on my shoulder on previous wle's came back as keloid,on one,and a nevus with some disorder on the other.  They both had really grabbed my attention  with not only pigment, but incredible itching and pain. The one on my neck had to be sent to the university of Utah given "the challenging nature of the case and the patients extensive history of melanoma. " It came back as a Desmoplastic Spitz nevus, which is a new one for me. I'm guessing it resembles melanoma since it was sent away for confirmation? The fourth one,  which I would have bet money on was melanoma since it was a dead ringer from a previous one came back as an AK with pigment. You just never know right!

Anyway, since no wle's needed on that round, we took off 3 of the most likely suspects on my back,all changing and begging for attention. To be continued...

Thanks as always to everyone contributing to this incredible place!

Aloha, 

Bob

We are one.

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Anonymous's picture
Replies 2
Last reply 7/13/2018 - 12:32pm

Hello,

I had a mole that developed recently on the palm of my right hand near my thumb (the one I use to write). It was removed by a dermatologist with a shave biopsy, and was diagnosed as an irritated acral junctional nevus with slight atypia. Unfortunately the base of the biopsy was not clear, so I was referred to a plastic surgeon to have an excision.

While the orignal mole and the scar form the shave biopsy are both pretty tiny (the original mole was measured at 4x4/1mm), I'm concerned that I will have tight skin on my hand.

I've searched around online, but it doesn't seem like this scenario is terribly common. Has anyone had an excision on the palm of their hand? Was your skin tight afterward?

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Leslee Laurel's picture
Replies 2
Last reply 7/12/2018 - 6:52pm
Replies by: MichelleRHG, Bubbles

Dignoised in 2017, had blockage removed and now its returned, only 3% of the population have this, no research is being done that my Dr knows of.....survival rate is 5 years....

I am 74 survived Breast Cancer and now this!

Any thoughts were be appreciated, would like to hear from others who may have this.

 

Thanks

Carole

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Slhnsd's picture
Replies 2
Last reply 7/12/2018 - 7:54pm
Replies by: kcmtnbiker, Slhnsd

Hello all! My husband was just diagnosed with both Melanoma and Basal Cell Carcinoma (in separate locations) He had his initial biopsy done and the pathology report said..

”The lesion extends to the inked lateral and deep edges  of the specimen. 

Diagnosis: Melanoma InSitu - T Classification. “

My question is.. how can the Dr say it is Melanoma InSitu when there were no clear margins on biopsy?! Can he make that determination before wide-excision surgery? 

Thank you! 

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cyprianthev's picture
Replies 1
Last reply 7/11/2018 - 10:59pm
Replies by: laurakoco

Thirty-year-old male here, and I find myself in the same spot I was a year and a half ago: waiting on a biopsy of multiple atypical moles. I've never been diagnosed with melanoma, but there is a family history, and just today a doctor removed three "concerning" atypical moles, one each from my face, my arm, and my back.

The mole on my face appeared about two years ago and had grown since then, which is why I noticed it; the one on my arm had an irregular border, multiple shades of brown, and a tail; and the one on my back was jet black, alone on my whole body, and had an irregular border as well, in addition to being new.

Last year all of my biopsies came back benign, and man am I hoping for the same result this time 'round. Has anyone had moles like these that turned out to NOT be cancer?

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