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
Replies 7
Last reply 1/22/2016 - 9:20pm

What's the typical plan? If there is response to the braf and mek.. then what? I have read it stops working after a few months. Do doctors typically start immunotherapy when that happens?


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Queenbee's picture
Replies 4
Last reply 1/21/2016 - 4:48pm
Replies by: ldub, WithinMySkin, jennunicorn, Anonymous

I just had a wide excision surgery on upper arm, after receiving a melanoma diagnosis 5 days prior. What do you recommend for home care? I have 12 stitches total (some inside that will dissolve and some external that need removed). The nurse told me but I was to nervous to process and remember. Thanks!

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jennunicorn's picture
Replies 11
Last reply 1/26/2016 - 6:35pm

It has been over two weeks since my second infusion. My next one is on Monday, the 25th.

Not a lot different from the first infusion. Mostly just fatigue. Not that fatigue is easy, it's made it very difficult to work as much as I'd like to, since my job is very demanding. But, it's better than a lot of the other side effects. 

I noticed for about a week and a half after the second infusion that I had days where I wouldn't be hungry. Not that I was nauseous or anything, I just noticed that my usual (very active) appetite was not there. It's back this week, thankfully. My birthday is tomorrow and I'd really like to enjoy a nice dinner and some cake!

Of course, I stay realistic knowing that things could be very different after my third infusion, but, I will continue to think positive thoughts and hope for continued ease through the rest of my treatment.



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Renate's picture
Replies 13
Last reply 2/4/2016 - 8:39pm

Hello!  I am brand new to this forum.  I was diagnosed with Melanoma 2 weeks ago - 1.3mm invasive spindle cell melanoma on my thigh.  I had surgery last week and they were successful at removing it all but did find microscopic melanoma cells in 1 lymph node.  Having Pet Scan and MRI on Friday and see DR on Monday.  He said I will need to remove the lymph nodes in my groin.  Im trying to stay present and not let my mind race - I have to beautiful boys to raise.  Can anyone tell me what to expect - I know i need those scans back.  Im most curiious about how will my leg be affected - do I have to wera a sleeve?  Do I have to trake interferon?  Should I?  Is this a life sentence now?  Thank you for any input.  I know Ill have to wait and see but trying to be proactive.

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Christine.P's picture
Replies 6
Last reply 1/20/2016 - 11:43am

I am experiencing some very painful mouth sores covering the full inside of my mouth - gums, cheeks, tongue. My current doctor says all he can do is prescribe a lidocaine gel and that I should suck on ice. I asked about prescriptions (antibacterial, maybe?) like I had when I had thrush a couple of months ago and he said no. 

Has anyone has a prescription that worked or any other remedy that helped? The thought of having to not be able to eat or talk for the next 3 months (when my ipi/nivo infusions end) makes me cry. 

I am actually in the process of transferring my care to a better hospital with an actual melanoma specialist where I hope to be treated more compassionately (long story) and will also ask her at our first appointment on Friday. 

Thank you for your support and feedback. 

Christine P. 

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amandak1026's picture
Replies 5
Last reply 1/19/2016 - 6:45pm
Replies by: amandak1026, Janner, Anonymous


My mom was diagnosed a few weeks ago. Her first biopsy showed a melanoma on her leg with a Breslow's depth of .66mm and a mitotic rate of 1. They took the tumor out last week, and the path report came back with the Breslow's at 1.03 and a mitotic rate of 2, and assuming no spread, staged her at IB. She did NOT do the SNB.

Now they're recommending she go in for a lymph node dissection. I'm very confused, as I thought the dissection was a full removal of the nodes because cancer was found there. But they don't know that yet? Is it normal for a dissection to be done as a prognostic tool? My mom is terrified, and I'm trying to find out as much information as I can for her, so I'm sorry if this is a dumb question. 

We meet with the surgeon on Thursday to discuss.


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Anonymous's picture
Replies 1
Last reply 1/19/2016 - 4:52pm
Replies by: jodaro

I am hoping someone can shed some light on moles, atypical moles and melanoma.   I always thought my moles were normal.   I have a bunch of very dark ones that are all flat.  Some of them are so dark brown they appear black at times.   I had my first mole check in the summer.   The dermatologist made a comment on my funny moles and removed a small one from my back.   This mole came back with mild atypical.   I was told to come back every 6 months.   I went to a new dermatologist that was closer to my house.   He did not bring up my moles at all except when he said the good thing about having a good deal of moles is that it makes it easy for me to see how your moles are supposed to look.    That visit was in Dec and he told me to have my wife check my moles every month and keep an eye for any changes.   He wanted to see me back in two years.

I had a seperate emergency and needed to see a dermatologist asap.  I had an allergic reaction to something.  I went to another dermatologist last week.   While examining my rash he commented on my moles.   He then asked if I wanted a body exam.   He removed a mole from my chest which I have had my entire life. He said that looked atypical.

Today I was examining my moles and realized almost none of them are perfectly round.  They all have variying shades of brown so they are not all the same color.   I then noticed one on my love handle that looks like the rest of my moles dark brown but it has 4 distinct dark brown spots ( almost looks like 4 pin head spots visible in the mole When I Spread the skin apart these 4 dark spots are visible. .    My question is how concerned should I bewitht this ?  Considering two derms have examined me in a month ?  Should I go back and show this odd looking mole to the dermatologist again?  Also because most of my moles look the same are not perfectly round do I have dyaplastic nevus syndrome or are these normal tiny moles and thats just the way they appear on my body ? 

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Anonymous's picture
Replies 2
Last reply 1/20/2016 - 9:25am
Replies by: Lil0909, Andrew1725

Hello all, 

I have almost reached my 6 months of Interferon treatment and this doesn't seem to be getting any easier. (Not sure it's supposed to.) I have ear pain, fatigue, loss of balance and migraines almost daily; I'm on Imitrex and Topamax. I drink tons of water. Also, going to try ginger root and peppermint oil. Also, noticing extreme muscle tightness in my neck, shoulders and base of my head. I hate to be negative but I have been pretty miserable lately. Wondering if anyone has any suggestions on how to ease any of these side effects.

Jen Stanley

Stage IIIa 

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Anonymous's picture
Replies 7
Last reply 1/20/2016 - 5:22pm
Replies by: Scooby123, Gene_S, emagdnim83, Anonymous

My husband has been fighting Melanoma since 2011. It was diagnosed stage 3B but progressed to stage 4 in 2014. Overall he has been successful, killing 14 metastasis in 5 years. But we found out last week despite his most recent treatment the cancer spread to his lung. He's feeling very defeated and I understand why. I've been here with him through the entire journey. But lately he sleeps until 5 every day and has no interest in taking care of daily tasks. He's had a short fuse and flips out if I don't do something right or try to wake him up or suggest he does anything. We are waiting to see if anything more can be done, so I'm sure it has a lot to do with the stress. I just need to know I'm not alone in dealing with this. I hope the short fuse gets better and we don't have to have this anger become a new norm. It is difficult to bear!!!

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Anonymous's picture
Replies 7
Last reply 1/28/2016 - 11:22am

Can anyone tell me if during your IL-2 treatment while receiving infusions the week in the hospital, if you needed someone there with you?  My husband will be starting a new trial and while in the 5 days I wont be able to be with him. I worry that he will feel too sick at times to be able to either ask the staff for things he needs, or to get them a snack or something.

He doesnt want me there as he says he will be well taken care of and feels more at peace when I am home with our children. The hospital is 3 hours away and he doesnt really want either of parents there either. They are not a good support system for him. Instread of focusing on his needs, etc. they are torn and apart and so distraught (they are both in their late 70's) over this they upset him more.

Anyway, I would just like to know how feasible it is for him to do this without me?  I dont want to be worried sick if I am not there, even though I can be there if need be at any moment.



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karima49's picture
Replies 2
Last reply 1/20/2016 - 8:43am
Replies by: Rita and Charles, Mat

Hi there. My mother was just diagnosed with Stage 4 melanoma in December 2015. It has spread to her lungs, liver, thyroid and just recently her bones and spine. She has been on the Mekinist and Tafinlar combination for 2 weeks now. I personally haven't seen much of a difference but she said she definitely has. She says she feels more aware. My question to you all is, has anyone been on this combiation of meds and also used the cannabis oil? I have researched the oil itself and it has done some amazing things. I got my hands on some (which is not easy) and my mother is scared to try it that it may interfere with her meds. I'm trying not to give up hope and want her to try anything there is that may help. Can anyone that has experience this please respond and let me know if we should try this or ask the doctor or...? My mother is my very best friend and I'm so scared of losing her. Thank you. 

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btcedarr's picture
Replies 5
Last reply 1/21/2016 - 10:20pm
Replies by: btcedarr, Anonymous, AshleyS

Hi. I am new to this site and have been following it awhile before posting. I was diagnosed on 10/13/15 with melanoma on my calf after a shave biopsy. The mole had been there my whole life and I saw no considerable changes, never itched or anything, but the dermatologist suggested it be biopsied during my annual exam. I had a WLE and SLNB on 10/22/15. I am healing well with after a bad cellulites at the SLNB incision and some stitch spitting at the WLE. I was staged T1b, at least .59mm, mitotic rate of 3, breslow III/IV. Nevoid and desmoplastic. WLE had clear margins and SLNB was negative. I now have checks every 3 months.

My question is in response to some posts of very similiar experiences and then finding it in the lymph nodes years later. If it wasn't there initially, is this usually another primary or it was missed initially. As you can tell, I am confused.....

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Scared99's picture
Replies 4
Last reply 1/20/2016 - 6:15am

I wanted to thank those of you who responded to my biopsy question.   I was hoping for a few more pieces of information from those of you with melanoma knowledge. 


Since my dermatologist visit in July I have been obsessing over my moles and regretting many past decisions of mine.    Most of my moles are very dark and in the skin,  When I google them it appears they are junctional nevus.  I had one biopsied in July and it came back very mild atypia.  I am nervously waiting my two other biopsy results from this week.   These moles  started appearing in my 20's and I continue to get them popping up in my 30's.    How much higher risk does this place me for melanoma ?  I have about 7 of them about the size of an eraser or slightly smaller and around 100 very tiny ones that you cant see unless you are on top of me.   I had one derm tell me i was very high risk and want 6 month visits.   Another tell me not to worry about them and wanted to see me every 3 years and the last one told me I have a slightly higher risk and wanted to see me every year.  


I am also getting conflicting info on the link between melanoma and the sun.   I had a ton of sun exposure my entire life.  I usually get a slight burn in the spring and usually get very dark by the end of the summer.   I also used tanning beds in my 20's.     I feel like this has also raised my risk significantly.    No one in my family has every had melanoma.  

Does hair color, skin type and eye color elevate the risk as well ?   I have very dark brown hair,  dark green eyes and am unsure of my skin type.   I do not think I am fitzpatrick skin type 1  or 2 as I do get very dark...  I might be a fitzpatrick skin type 3 ?   

Thank you all.... I am looking for any info you all can provide.

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