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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Christine.P's picture
Replies 3
Last reply 6/6/2016 - 12:53am

This may be kind of a dumb question, but will a PET scan pick up melanoma on the scalp? I am stage 4a and just had my quarterly PET scan (it found a new lesion on my leg above the primary site I had removed last August) but have been noticing some sore spots on my scalp the past month or so. I have a friend who is going to take a look at these spots for me and will mention them to my doctor at my next infustion on Tuesday. It seems like the PET would have found anything unusual on my scalp, but wanted to see if anyone has experience with this. 

Thank you all!

Christine P. 

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Belah's picture
Replies 6
Last reply 6/6/2016 - 1:01am

We are having a hard time with side effects. My husband is stage 4 with smallish Mets in his bones, liver and spleen. He was on Braf and mek inhibitors which caused pretty severe side effects.

Now he's on opdivo. He's lost a lot of weight and is struggling to keep any fat at all. Now he gets very short of breathe when walking and today nearly passed out from being in the heat (just from walking from the car into a store.)

It's hard watching him go through this. The doctors here are a joke. He goes to MD.Anderson when we can actually get there. (August is our next trip.)

So I feel like I have to treat his symptoms. And I have no idea what to do. He is 30 and walks like a frail old old person. I don't know if it will ever get better, but I can tell you, the moral is dismal. Can ANYONE who has gone through any of the symptoms, shed some light on what they did. Or give me any insight as to what a caretaker can do.


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Anonymous's picture
Replies 3
Last reply 6/5/2016 - 10:24am
Replies by: Anonymous, jennunicorn

It's very hard to tell so just look for another opinion with a clearer head than me!

This is 2 months ago

This is today

Also what type of mole do you think this is?

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cstearns's picture
Replies 9
Last reply 6/5/2016 - 5:59pm

Wow! This is happening fast. I'm Pharmacist and helping a friend with just Diagnosed Stage 4 Melanoma; He is not medical knowledged and I am not with Melanoma, but reading vigorously to catch up.     We live in area of general oncologist not specialist in Melanona.  I read he has much better chance now to get aggressive with newer immunotherapy treatments.  We are equidistant from La and Bay Area.  We are not familiar with staying at centers focused on Melanoma and looking for how to set him up for aggressive treatments. He has good insurance, FYI.   Thanks for your thoughts....Charlie

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Anonymous's picture
Replies 22
Last reply 6/18/2016 - 12:35pm
Replies by: Anonymous

I have no diagnosis of any skin cancer. A few days ago, when I got out of the shower there was an itch on my skin under my left forearm. I looked down, and saw this weird reddish bump where the itch was. I wondered if maybe it was allergies and thought that wow this is one heck of a reaction. The itchiness has subsided over the past few days, but the weird bump is still there.


Location: Under left forearm on skin.

Size: Nearly the size of a U.S. penny on one side (19.05 mm), and shorter on another side.

Shape: A kind of irregular elliptical shape, asymmetrical. Some concave areas.

Color: A generally reddish color, with a more pinkish color near the border on one side. A few dark specks that I guess are dead hair follicles.

Feel: Still a little itchy. It is raised above the skin.

Relevant features: I am light-skinned with natural blonde hair.

Picture: Not very good, as I don't have a camera other than my big heavy laptop, but the bump should be clearly visible.

I'm going to walk in to my doctor's office today, as they have walk-ins on Saturday. In spite of the lack of dark colors, my fair features make it still cause for concern. The abrupt development of this "bump", its persistence, and its characteristics have me concerned.


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Anonymous's picture
Replies 2
Last reply 6/6/2016 - 4:15pm
Replies by: Kare83, Anonymous

I'm currently watching a mole on my shoulder blade. Last night I had itching in the area only once and when I looked in the mirror it was the mole. It hasn't inched since.

My question is would melanoma itch more constantly or is once of itching still a concern? I just find it weird that the only itching spot was a 3mm mope on the whole of my back

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Mat's picture
Replies 10
Last reply 6/9/2016 - 8:25pm

"Previously described hypoenhancing hepatic metastases do not demonstrate increased FDG uptake compared to background liver activity." These are the sweetest words I've read since my Stage IV diagnosis (maybe ever).

I had my second set of scans since ipi-nivo (~week 19), but this was my first PET scan since diagnosis. No new tumors, and none of my existing tumors (~10 liver tumors and a few lung nodules) show "uptake". If I didn't have a naturally skeptical disposition, I might think I was on the path to NEAD (no evidence of "active" disease). Nice to think about, but I've seen the movie before (including my 2015) where it seems like things are going well for the protoganist and then, well, you know. That said, I continue to take it one day at a time--and today is a good day!

The PET did show some uptake (but not tumor) in my pancreas, which could be a sign of pancreatitis. I'll have labwork to confirm. If I have pancreatitis, I'll need to suspend nivo--but I'll save that potential obstacle for another day.

In any case, we're getting ready to start my daughter's birthday weekend. She had just turned 4 when I was diagnosed. I'm so grateful to be here for her 7th birthday. Enjoy the weekend.

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Bubbles's picture
Replies 4
Last reply 6/5/2016 - 9:07am

Here's a link to download a PDF or look through articles you may be interested from ASCO this year:

At least, I think that will work.  Still posting an abstract a day!!!  Hope you are all having a great Saturday!  c

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Ajwells's picture
Replies 3
Last reply 6/4/2016 - 6:29am
Replies by: Anonymous, Polymath, momof4boys

I went in to surgery with a melanoma on my scalp that per punch biopsy was 0.8 in depth with a mitotic rate of 1. The surgery sucked. They had to make a skin flap on my scalp so I have a giant incision on my head. I had 50 staples removed from it yesterday, but it is healing well. The sentinel nodes were behind both ears. 

Today I went to my surgical oncologist and she told me the results. When they removed the entire melanoma spot, they found it was Clark level IV, and breslow thickness 1.5. Which surprised me. Does it happen a lot that the melanoma ends up being a lot thicker than the biopsy shows? Also, one out of 8 of my sentinel nodes tested positive for melanoma cells. One little mfer. I have two scans next week. Brain MRI and full PET scan. And then another surgery to take out more of the nodes from that area on the left side of my neck.  My surgical onco also told me she would be referring me to s medical oncologist to talk about immunotherapy treatment. Which I know nothing about. Anyone with experience that could give me a little about what this consists of?  My main issue is whether I will be able to work while doing the treatment . I am running out of FMLA!  

As far as bad scenarios that could of happened today, I don't consider this the worst. But I wanted to be done dealing with this!  Next step I guess is to hope for clear scans!  

Thank you for listening I guess. I just wanted to talk to some people about this who understand the terminology.  

27 year old mother of three. Diagnosis stage 3a with the primary on my scalp. Currently receiving Ipilimumab as adjuvant treatment. 

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jade1111's picture
Replies 8
Last reply 6/5/2016 - 1:16am


Feeling a little overwhelemed byt the melanoma beast... My mom was going to start a trial next week for opdivo and epacadostat.. Its been 5 monhts since the orginal find of abdnormal lymph... long journey of scans, second opinion and decisions.. With decision finally made for the trial the Brain MRI was completed.. they found 5 small areas on brain and apparently one in tricky spot. They will not proceed with trial until this is taken care of.. I guess they are recommendng Gama.. all so confusing.. and then you wonder does the current place have a good department to handle this.. or do we need to Vet that aspect as well.... Anyone know about UCSF in terms of treating Brain Mets?

On the bright side.. another pet scan was done (2-3 months) from original and showed no progression. Actually the lymph gland that has now been biopesied twice had reduced in size. Maybe due to biopsies themselves.. not sure but thats something!!

Thanks so much for all the infomation on this board. i did not know much about the Brain Mets version shall we call it of Melanoma and it was very helpful to read threw and understand what was talked about today.

If anyone has words of wisdom on this Gama process would be much appreciated.. how to go about it.. and preparing the best team... and how serious are the risks.

Best to you all!!! Thanks so much for all the positive support and knowledge.



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Would all evidence of a shave biopsy done less than a month prior to WLE be gone ? I can't imagine nothing is in the 2nd biopsy to indicate a biopsy was done on that area less than a month prior. Suspect surgeon did 2nd biopsy in the wrong spot. Quite concerned since margins of 1st biopsy were not clear. Spitzoid in an adult can move into melanoma quickly from what I read. Any thoughts on this. Surgeon wants to see my son again and compare to picture he took of scar when he first consulted prior to surgery 

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Anonymous's picture
Replies 2
Last reply 6/2/2016 - 2:00pm
Replies by: Rosegargala, Anonymous

I just recently shaved my head for the summer.   I noticed a pinkish bump on my scalp.  It is pretty small maybe 2-3mm at most.   I actually remember a few years back picking at the spot and thinking it might be a scab.  It never came off and when I looked in the mirror it was a pink bump. It still looks the same as it did a few years ago.   I googled the term pink bump on scalp and nodular melanoma showed up and so did spitzoid melanoma. 


My question is do nodular melanoma's/spitzoid melanomas grow like other melanoma's ?  So if this bump was a spitzoid or nodular melanoma It would be somewhat bigger several years later ?     I have a ton of those red, stupid cherry hemangioma's on my body as well.   So I am trying not to over react to this bump as it might simply be one of those. 


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pyroman251's picture
Replies 9
Last reply 6/11/2016 - 12:23pm
Replies by: jennunicorn, pyroman251, Rosegargala, Anonymous, MoiraM

Found this site because I have been browsing the internet looking for guidance. This is my first post, please forgive me. I am terrified about a mole I have on my chest, just above my right breast area. I followed up with my primary care physician yesterday, and he is scheduling me to see an Dermatoligist. This has me worried. He didn't think it quite resembled melanoma, but wasn't sure. He thinks it might be Dysplastic Nevi. Here is an image:

Another thing I might add, which is the scariest part. I have been having neck and shoulder pains for a few weeks now. I thought it was because I slept on my shoulder wrong (as I did in fact wake up one time with my shoulder asleep), but I have read a few stories where Melanoma hits the lymph nodes and causes this sort of pain. It is on the right side, as is this mole. 

My primary care physician did not seem to indicate the two were related. He thinks the neck and shoulder issue might be muscular. Though a dose of Flexiril did not help any.

Really nervous...

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warreri's picture
Replies 2
Last reply 6/1/2016 - 5:44pm
Replies by: warreri, Bubbles

Had a dr. appt today where we were going to discuss surgical options that hinged upon me being negative for braf mutation but my results came back positive for braf so now I have much more pleasant surgical options. They're going to put me on mekinist and tafinlar. Is there anything I should be wary of in these treatments? anything I should be wary of with the braf mutation in general? I hear that the braf mutant melanoma can be more resilient and aggressive. Is that true? Just wanted to share the good news and get more info on the specific mutation. Overall I'm psyched to have more treatment options available to me.

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Anonymous's picture
Replies 7
Last reply 6/8/2016 - 1:46pm
Replies by: geriakt, Anonymous, Mark_DC, Ed Williams, Bubbles

I have currently enrolled in a clinical study for my stage 3B melanoma.  Yervoy vs. Keytruda.  I have not yet started.  I am getting nervous about this....any thoughts/input on efficacy of PD1's for stage 3?  My original hope was the PD1 as it seems to be better tolerated?  However, I obviously want something efficacious.  I know their is a ton of expertise out there..thoughts?  Thank you...

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