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

Hello,

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
Anonymous
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
Anonymous
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
Anonymous
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
Anonymous
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 himself....like 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.

thanks.

 

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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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Over 2000 folks come together!

http://melanomainternational.org/safefromthesun/

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stevecathy's picture
Replies 4
Last reply 1/16/2016 - 12:47pm

My husband had reaccurence Mets in transit found at 3 month dermatologist check. He had just finished 4 infusion of yervoy. Went back to ctca in Chicago Wednesday this week , oncologist did ct scan now has small nodule in right lung too small to biopsy. Now he is to start mekinist and tafinlar hopefully next week. Wanting to know thoughts and anyone experience with this combo treatment. Thank you and blessings

Cathy Jewell

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/17/2016 - 10:16pm
Replies by: Anonymous, jamieth29

I have a recurrence in my groin area which they wont operate on as I am on keytruda with mets in a few different places in the body. I dont really want to do radiation but I dont think there are any other options.

Does anyone have experience with radiation to the groin ie number of treatments, side effects, strategies to help with coping.

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Anonymous's picture
Replies 5
Last reply 1/15/2016 - 10:46pm
Replies by: KMick, Azcaddyman, Anonymous, Empire

I was just diagnosed.  Dermatologist excised.  It was 4mm, which I understand is relatively large.  Have been referred to a Surgical Oncologist.  I expect discussion/suggestion of SLNB.  How soon should this be done?  What is the typical wait for such a test?

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Anonymous's picture
Anonymous
Replies 6
Last reply 1/26/2016 - 12:35pm
Replies by: _Paul_, Nanners10, Anonymous, jennunicorn

Hello

I was on this board almost two years ago and it was very helpful. Thank you so much for that!! Was looking for Melaoma Specialist in SF Bay Area for my mom.

 

Mom went to Stanford and had a WLE on her right leg almost two years ago (where melanoma mole was) and SNB. The SNB came up negative. The past month she has had swelling in right leg (swelling has since gone down with more exercise and water). HAs had slight swelling ever since SNB so was not to concerned but it did get quite bad and her primary care DR sent her in for sonogram to rule out DVT and do a more focued one on lymph. What has come back is that one inguinal lymph glad is enlarged with blood supply and highly suspicious for mailiganancy.  The Melaoma Dr was suprised and said it would be very rare based on her original melanoma.  From what I have read on the board and overall it can happen. My mom is upset and concerned about her care at Stanford.. who she should be talking to and what next process is.. As of this point trying to get ultrasound guided biopsy, but also considering second opinion with UCSF. Though not sure would see her till recuurecence confirmed? My other Question include  -At this point should primary dr be guiding care.. she has talked with Melanoma Dr? -Is single Biopsy the way to go or should a PET scan be done first? 

 

Any input appreciated!!!!!

Thanks!!

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 1/17/2016 - 2:57pm
Replies by: Anonymous, Ed Williams, geriakt, Scooby123

Ive been sick since dec 31st with a really bad cold that I caught from my daughter.  I actually tested positive for the adeno virus. Had a fever for  8 days straight and was in the hospital for 4 days. Last friday was my last fever until last night. Started feeling week and took my temperature and it was 103. I took a fast tylenol and within a hour was back down to 98. My question is on each side of my neck I have a swollen lymph node maybe the size of a marble that are a little tender. I had a ct scan of my neck in hospital and all they seen was inflammation and congestion. Is this anything to worry about or is this just from my body fighting off infection. I have Yervoy scheduled for monday. Will I be allowed to do Yervoy or will the yervoy push me over the edge and make me super sick. Can somebody do yervoy with a cold? Thanks

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Scared99's picture
Replies 3
Last reply 1/15/2016 - 7:52pm
Replies by: Anonymous, Scared99, Janner

Hey guys and girls,  I am new to the forum and apologize but I did not know where to turn.   Let me start by saying I have not been diagnosed with Melanoma.   I am 35 years old in good health.  

My concern is in July of last year I had my first full body scan since 2005 with a new Dermatologist.   I have always had alot of moles.   On my torso I have 7 that are around 4mm  and about 60-100 tiny pin point sized moles.  I was an idiot in my 20's...  I used tanning beds during my 4 years of college and 2 years after.   I sun bathed and rarely used sunscreen when outside.  I would only burn the first sun after the winter so I was ignorant and did not think I needed sunscreen because I would get very dark.  I regret all this now and it makes me sick.   My dermatologist in July commented on my moles and said that I had several funky looking ones and I need to consider having them removed at some point.    She biopsied one on my back that I never noticed and it came back very mild atypia.   She called me in and explained that I have a very high risk for Melanoma because of this atypical mole  and would need checkups every 6 months.    I had several noticable moles on my torso and she did not comment on them at all. 

Fast forward to this Dec.... I made an appointment with a new dermatologist closer to my home.   I had another scan with him.   He photographed a mole on my leg and said it was an inflamed nevis but wanted to watch it.   He scanned all my moles and said everything looked good.    He wanted to see me in 3 years,,, unless I noticed a change in the mole on my leg.   I was somewhat in shock after my visit in July and asked him if I had any atypical moles.   He said the only one that I noticed is the one on you stomach it looks somewhat atypical.   He asked me when I noticed it and I said I remember freaking out about it in 2003.    I went to a derm back then and they did nothing.   He said since it has not changed since then keep an eye on it and if you notice anything please come back in.    So the two differing attitudes of my dermatologist's confused me.    I made a 3rd appointment which I had Yesterday.

The third derm did a body scan on me.  He commented on my moles and said you know you have a good deal of moles.  Keep an eye on them.    He went right to the mole on my stomach and told his nurse we will get this one off.     He did not ask me about the history of the mole or anything.     This alarmed me and I asked him does this look like melanoma ?   He reponded it does not scream melanoma but it looks different from your other moles so I want to investigate it..  So he measured it and shaved it off.    It was 4mm directly above my belly button.    Right now I am confused and scared about the whole situation.   I did not notice ANY change in that mole since I first noticed in in 2003.    I am playing the what if game at the moment and making myself sick.    THe derm in July did not even pay it any attention,  the second derm in Dec made a fleeting coment on it and this derm wants it off.     Should I be alarmed about this ?  I am worried that this has been a melanoma for along time and no one did anything .

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