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.

Expand/ Collapse Topic
Replies By
View Topic
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.


Login or register to post replies.

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.

Login or register to post replies.

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.

Login or register to post replies.

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!


Login or register to post replies.

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. 

Login or register to post replies.

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.

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.

Login or register to post replies.

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


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!

Login or register to post replies.

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

Login or register to post replies.

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.

"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.

Login or register to post replies.

daughter1's picture
Replies 8
Last reply 6/6/2017 - 10:20am

HI.   I haven't posted in a while and I just wanted to give an update and post a few thoughts/questions about my mothers journey.   August of 2016 she had a CT scan because she was experiencing discomfort.  Nothing was there.  Not a thing.  February 2017- she thought she was having gall bladder attack.  We took her to the hospital thinking that she needed gall bladder surgery.   Gall bladder was clear.  Liver was not.  In hospital for a few days.  Doctors suspected melonoma because of her history (2 wide excisions performed on her back- 12 years ago- deemed clear)   Biospy came back benign.  we were elated- but I couldn't rest until we had the best of the best telling us she was fine.   Made an appt with Sloan (we live in NJ- thankfully!)  There testings came back with absolute certainty- their biopsy- Stage IV metastatic melamona.  Found in her liver, spleen and tiny in her lungs.  Started ipo/nivo in March.   First treatment- fine with very little side effects (occasional fevers and sweats)  Second treatment-  fevers worsening and night sweats something fierce.  Kidney and liver levels postponed third schedules treatment.  Was put on steroids and monitired twice a week with blood work in Basking Ridge.  


I should mention that when we arrived for the third scheduled treatment that she didnt receive- we got the results from the first cat scan since starting immunotherapy.   Report was positive- ofcourse I was looking for a miracle but I was assured that the results were good   Slight decrease in all tumors and even more remarkable was the density of these tumors.  Dr. assured us that going off the schedule wasn't that big of a deal because the meds would still be working.   


Ok- so moving on-  three or 4 weeks- (I don't remember!) of steroids and blood work, she was approved to receive third treatment yesterday.  She received a second cat scan last week prior to this third treatment.  Dr. came into office very pleased.  Said that he is now going to move her to just Opdivo every two weeks.  He was concerned that the combo would have side effects that could hospitalize her.  He was happy so we were happy.  

I got home and took a look at her cat scan report.  (he didnt show us the results yesterday in his office- and at times, I will be honest, he makes me feel awkward asking questions.- I will accept all of that- just save my mothers life- you can make me feel any way you want!!)  

So the report showed little to no decrease at all.  Positives- no new tumors.  (remember how aggressive this is from august to feb) but the size of the tumors didnt really shrink at all.  

I guess there is a part of me that wanted better news.  I know I know- this is a marathon not a sprint- but her side effects weren't totally crazy from the combo- why couldn't we just continue with it. 


Thoughts?  This is a true nightmare. I hate when I hear this extends lives- although its wonderful that lives are extended by this amazing revolutionary thing called immumotherapy and I thank God that he put brilliant scientists on this earth to tremendously improve the way we treat cancer,  I am constantly worried about this-   how many months years, are you talking?  I know we don't have a crystal ball- but is it possible my mom could live like this for years and years.  Is it possible she will be here to see my sons get married.  

Need some hope here.  THanks in advance.  And thanks to all of you that selflessly respond and share your own stories. 


Sincerely ,


Login or register to post replies.

miaka618's picture
Replies 7
Last reply 6/3/2017 - 4:33pm
Replies by: MovingOn, Anonymous, miaka618, UBContributor

Hey guys! Just wanted to provide an update on what's going on in April land.

First a quick recap of my first year in melanoma land. My initial mole was located on my right temple, just in my hairline. I had a 7cm excision as well as 3 sentinel nodes removed back in April of 2016. All nodes came back positive. A neck dissection soon followed removing 28 more nodes, all clear. Started ipi in the summer, but had to stop after 1 dose because of an insurance hiccup. Good thing too because my pituitary gland flared up about a month after that and I was placed on high dose steroids. I currently lost production of cortisol and thyroid hormone. A late fall PET scan revealed another lymph node near my right ear which they then removed just before Christmas. My next PET revealed that EXACT SAME SPOT. Ok, so there were 2 lymph nodes that needed to go, not 1.

Now that you are up to speed. I went in last Wednesday to have the second lymph node removed as well as several other suspicious nodes around my neck as well as a suspicious looked mass of tissue from my right cheek. The surgeon didn't want to leave anything behind this time. I got the path back today and it seems that out of all the nodes he removed, 2 were positive and the mass of tissue was apparently nothing. I'm actually pretty happy about those results, but definitely confused about what the mass could have been. I had been noticing a bit of pain in that area for the last month, and mentioned it to the nurse practitioner, but when it came to crunch time, it totally slipped my mind to mention it to my surgeon! Buy yet, he found the mass on his own. 

All of my nerves are dead again. Boo. They were doing such a nice job reconnecting themselves. I mean, the feeling wasn't completely back, but there was definitely some sensation there. I could totally scratch my ear by rubbing under my chin! Ha! Nope, all gone again. I guess we'll see what the next rebuild will do. lol

This surgery was just before Memorial weekend, so of course I over did it. The weather was so perfect. We went on a bike ride, swung on the rope swing, grilled out, watched the neighbors shoot off fireworks and stayed up way to late. By Monday I was so exhausted I missed my son's parade. :( I feel terrible about that.

Back to the oncologist on Friday to figure out what's happening next. He's retiring soon, so I guess this will be the last time I see him. 

Cheers my fellow warriors.


Login or register to post replies.

maryb-z's picture
Replies 1
Last reply 6/1/2017 - 10:13am
Replies by: keepthefaith11
Ridingaroundwith27Jennifers's picture
Replies 6
Last reply 6/1/2017 - 9:38pm

Today was the day for my post radiation MRI.  The quick background: Brain met removed 3/24.  Post op MRI looked great.  10 day post op MRI showed tumor regrowth.  Radiation was started the following week in conjunction with Nivolumab.  CT of chest/abdomin/pelvis showed slight tumor shrinkage of adrenal glad and lung mets.  I was waiting desperately for the brain MRI.  Over the weekend I had a seizure down the right side of my body and was put on Keppra after a call to the doc.  

The MRI shows some edema but no tumor growth and no new mets!  I'm cautiously optimistic.  Was hoping to be able to drive again soon but with the seizure the state has me out of the driver's seat for the next six months.  This is going to put a damper on going back to work.

Login or register to post replies.

Shannon B's picture
Replies 4
Last reply 5/31/2017 - 10:48pm
Replies by: Shannon B, BrianP

Just wondering who is from Virginia or who has been treated at UVA?

Shannon-wife to Wille

Login or register to post replies.