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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MLDBlondie's picture
Replies 3
Last reply 6/3/2017 - 4:51pm

I was diagnosed in April of this year with stage 1A on my inner thigh. I've since had the WLE at the site and am recovering well. Also a squamous cell carcinoma on my chin. Both surgeries were done within 3 days of diagnosis.

I am meeting with an oncologist this week. My question is, what should I expect test wise? Since the surgery was considered "curative" should I expect any invasive tests?

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Bubbles's picture
Replies 10
Last reply 6/6/2017 - 1:35pm

Ok...so my brain is tired.  This is probably the longest and most complicated report I'll be putting up.  I combined what I thought were the most salient of the brain met abstracts here:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-melanoma-brain-mets.html  

Wishing peace and joy for each of you.  celeste

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judyk's picture
Replies 2
Last reply 6/4/2017 - 7:49am
Replies by: KG, foodie22

i was dx with naso/sinus mucosal melanoma 5 years ago i opted for surgery and radiation and more surgery to keep it at bay in my nose. now the PET shows 2 spots in my liver. i feel well but need to have a biopsy and then decide from there. i have been putting off immunotherapy since i dont have any of the markers and it is for skin melanoma. they dont have any specific treatment for mucosal other than use the immunotherpy for skin. recently, i am hearing that there is a 5 year survival rate for 20% of patients. hope that is true.  please let me know if you have mucosal and how you are doing. and what the treatment has been.

thanks   jk

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Shaneswife's picture
Replies 13
Last reply 6/5/2017 - 2:58am

It's with a heavy and broken heart, that after a lot of talking, Shane has decided to cease life sustaining therapies. He wants to spend what time he has left enjoying family. We have in home hospice supports being put into place. My heart is shattered but I understand that this has weighed heavily on his heart but this is the right decision for Shane. 

 

Janis

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waltonyoung's picture
Replies 3
Last reply 6/3/2017 - 12:00am
Replies by: Anonymous, SABKLYN, Shannon B

Hi everyone!

My name is Patrick and I recently got diagnosed with melanoma, stage 2. I am 20 years old and kinda nervous about all of this. I cannot seem to wrap my head around what is happening. One day I was with my friends and the next day I am on crutches with a huge scar. I hardly get sun being in college, and always wear suncreen. My surgery went fine, and 12 staples later they safetly removed all of it on my shin. Its very painful and not something I ever want again. However, this does not seem to end. I had 2 more moles removed and they were atypical so they have to go in and punch them out. One of them is not even a high sun exposure spot, its in between my 3rd and 4th toe. I need advise on what to expect. Is there any technology or methods out there to keep track of my moles, because I am extremely freckely? Will my future just be painful surgery like the last? How should I best avoid repeating getting melanoma? How often does melanoma repeat in a patient that already has it? I am nervous because I am the first person in my family to get this. The scariest part to me is not the melanoma or anything its more so my age. I do not want my future to be surguries, shavings, and doctors. Any and all advise is welcome. 

Thank you,

Patrick

Patrick Monroe

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Bubbles's picture
Replies 9
Last reply 6/5/2017 - 7:40am

Though it is with a heavy heart....I have begun plowing through what I think are the most pertinent ASCO abstracts for folks here.  There are many sites through which you can read the abstracts and reports as well as see videos of presentations and discussions for yourself and I encourage you to do so!  However, I will be putting abstracts grouped as they seem to read best, with pertinent background data if I have it, and my interpretation of the expert's jargon in red up on my blog.  The rough topics I have made are:  brain mets, ipi 3mg vs 10mg, outcomes after stopping immunotherapy, new combo's and meds (ipi with CD47, pembro with entinostat, nivo and anti-LAG-3), intralesionals, news for NRAS folks, and a few others.  

Here is the first installment - posted today:   ASCO 2017: Nivo or Ipi/Nivo combo in melanoma after progression on ipi or anti-PD-1

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-nivo-or-ipinivo-combo-in.html  

In honor of Jamie and Joshie....

I wish each of you well.  Celeste

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rabbits68's picture
Replies 4
Last reply 6/3/2017 - 1:30am

I have just started a Clinical Trial with Utomilumab at Sloan Kettering. Has anyone heard of or been on this drug? . I have progressed on other therapies and chemo. I have been having alot of back pain and the MRI showed bone mets from thoracic down to sacrum. One of the tumors is sitting on a nerve. I am feeling discouraged about so much bone involvement. I also have in my pelvis and femur. Anyone have good reports of regression in bone tumors? I am hoping the travelling and trial will be worth the time, money and exhaustion.

LisaG

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Firewifeowens's picture
Replies 8
Last reply 6/2/2017 - 11:57pm
Replies by: Firewifeowens, Shannon B, Franny, Anonymous

Good morning all. My name is Lena. I am 44 & was diagnosed with melanoma this week after having a punch biopsy done on a scary looking mole on my back. They haven't given it a stage yet as the doctor wants to cut on me more first and also biopsy lymph nodes. That part is scheduled for June 14. The dermatologist doesn't seem to be getting in a hurry but I'm freaking out. I already have gastroparesis and am 100% tube fed, NPO. My immune system seems to be basically non-existent as I seem to catch every bug that comes along. My question is:  what signs and symptoms have you had due to the melanoma spreading? Even with tube-feeding I've lost approx 20 lbs in the last 7 weeks. I've also ran fever at least once a day (sometimes all day) for about 5 weeks, and night sweats every night for about that long. I get chills and severe body aches to the point that it is difficult to walk at times. And 2 days ago I started getting ulcers in my mouth. I'm extremely stubborn and try to not go to the doctor unless I think there is something they can do to help. I've tried several times this morning  to reach my family doctor, with no answer. Have y'all had these symptoms? Should I be scared? Thanks in advance for. Any and all info.

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Shannon B's picture
Replies 7
Last reply 6/6/2017 - 8:43pm

We met with Willie's new medical oncologist today and got the results of his MRI and PEt scans yesterday. Good news- no brain mets. Bad news, loads of places lite up. Liver, spleen, femur, bone in right shoulder, spots on ribs, lymph node areas all over. Possibly small spots in lungs. Dr. says that since lymph node under L arm tested positive for Melanoma that they are sure that is what all the spots are. 10 years ago his other oncologist said he didn't like PET scans, too many false positves. I guess my question is, should I hold out some hope that these spots aren't melanoma and request they do CT's. BRAF negative so he is going to start ipi/nivo next week.

Shannon- Willie's wife.

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Nick44's picture
Replies 6
Last reply 6/5/2017 - 12:30pm
Replies by: Threefitty, Franny, UBContributor, Anonymous

Hi all, I'm in that terrifying window after my first-ever biopsy. Being pretty freaked out, I thought I'd try to gather some info here while I wait. My main question is basically how worried I should be about the following situation:

I'm a 35 year old white male, and just had my first dermotologist checkup in 2 years. She immediately noticed a funny looking mole on my outer ear, which is apparently a danger zone. I saw a different dermotologist for this same mole about 2 years prior, and he wasn't very alarmed. I haven't noticed it change shape or color. It was a little blueish, not raised at all, totally guessing but maybe 4mm, fairly symmetrical, and a few people like my mom and wife have commented on it.

So the new dermatologist immediately says she wants to biopsy this thing, and before I know it my ear is numbed and they've got the scrape razor out. I'm ok with all of this - safety first. So they scrape out a big old chunk of my ear. The mole was not raised, but they dug down pretty deep - again totally guessing but maybe 2mm or a little more. It's a good size chunk out of my ear.

Here's why I'm freaked out - that sucker goes deeper than that! She said she wasn't going to take all of it since it went that deep, and she had enough for the biopsy. You can still clearly see the mole in the crater left behind. So here's the million dollar question -- does this funny looking THAT DEEP mean cancer for sure? Do benign moles go deep into the skin? Any insight is welcome as I settle into this terrifying week of waiting for results. Thank you!

-Nickk

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Aloha14's picture
Replies 7
Last reply 6/2/2017 - 7:34pm

I had a high resolution CT to my abdomen and pelvis to check on the area of concern from the Petctscan that lit up indicating a possible malignant lymph node. The CT scan didn't show any abnormality, and turned out to be a normal lymph node next to my ureter/bladder, and it lit up due to having my bladder partially full. So, it was a false positive. I'm so glad that's over with it. 

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Nal64's picture
Replies 31
Last reply 6/6/2017 - 12:57pm

I wasn't sure  if anybody would see this when I posted it under the last inquiry about Josh. Hence, the new topic.

Josh brings so much  to the message board and has always been the person I look to here for info on  the rare "desmoplastic mel"  diagnosis. We use the same doctors and he has always been just a step ahead of us in treatment (my husband is also stage IV).  When I couldn't find him on the message boards anymore I got scared and somewhat stalker-y.  I was able to locate his brother who had set up a go fund me page for Josh.  I sent him an email inquiring about Josh and got this reply:  

Hi, Nancy
I was with josh last night and read your email to him he was touched! My brother is fighting, he was put on hospice two weeks ago. They have stopped treatments and now the hard part . Josh is a wonderful person and has done so many good things in his life.
He served his country in the Marines he is an amazing father , husband and the best big brother anyone could ask for. There will be a special place in heaven for him. He has touched so many on his journey. We pray for your family and for your husband to heal. God bless and thank you for reaching out it mean a lot.
Mike

I know many were wondering about him and I tried to convey how important Josh is to us all.  Keep his family in your thoughts and prayers as they go down the road none of us wish we were traveling.

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heatherrenee_c's picture
Replies 2
Last reply 6/2/2017 - 7:46pm
Replies by: Janner

Hello!

Last year I had a WLE for a stage 1a melanoma on my left arm.  Now I have another melanoma on my leg they are doing a WLE for on Monday.  This one was tested by a shave biopsy.  My derm said she really didn't expect it to be melanoma but with my history wanted to check on this mole.  My surgeon says he doesn't need to do a SNB because of the thinness (0.48mm) but my questions is how do they know the depth with a shave biopsy?  This is what the path report says in regards to margins: "Atypical intraepidermal melanocytic celis exted to the peripheral edges of the tissue specimen and dermal nevus cells extend to the deep edge of the tissue specimen."

I plan on asking my surgeon more questions Monday prior to surgery, but wanted to ask here if any one can help explain?  Or help with better questions to ask my surgeon since I always seem to leave with questions unasked! 

 

Thanks in advance!

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A biopsy was done on a suspicious mole during my last three-month checkup after a melanoma diagnosis last November. The report reads:

"Dysplastic compound nevus with mild atypical over dermal scar; edges involved. 

Microscopic description:  sections show a compound melanocycytic proliferation with irregularity of the pattern of nests and cells at the dermal-epidermal junction. There is a variable host response. Some of the melanocytes are atypical.  Overall the degree of atypica is mild. There is a focal dense fibrosis, consistent with scar. The edges are involved."

Could anyone help me understand this?

Thanks!  Diana

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Replies by: AliCat61

I came across this article today and there is a list on the bottom that shows risk factors for melanoma. There are a few that surprised me.

http://www.news-medical.net/news/20170523/Melanoma-could-affect-anyone-r...

"According to the Rush Department of Dermatology, a variety of physical, historical, and genetic traits increase the risk for developing melanoma, including the following:

Having a mole present within the first two weeks of life (a birth mole) (10-fold increased risk)
Having a personal history of melanoma (nine-fold increased risk)
Having a family history of melanoma (eight-fold increased risk)
Having numerous moles and/or atypical moles (eight-fold to 40-fold increased risk)
Having had a Spitz tumor removed (eight-fold increased risk)
Having had an atypical nevus removed (seven-fold increased risk)
Having had at least 2 moles removed in the past (five-fold increased risk)
Prior treatment for psoriasis with more than 200 PUVA treatments (psoralen pills and ultraviolet A radiation) (five-fold increased risk)
Having had a basal cell cancer or squamous cell cancer (four-fold increased risk)
Presence of dense sun-induced freckles (three-fold increased risk)
Immune suppression related to disease or medication (three-fold increased risk)
Having red hair (two-fold increased risk)
Having Parkinson disease (two-fold increased risk)
Multiple sunburns in early childhood (two-fold increased risk)"

The first thing they asked me when I was diagnosed was about sunburns. I know I haven't had many sunburns in my life, in fact I tan quite easily. This is the first time I read something that agreed with my thoughts on the matter.

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