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
Anonymous
Replies 5
Last reply 1/18/2018 - 1:58pm

Epacadostat; Incyte: 

This drug could be the year’s most-anticipated cancer immunotherapy. Designed as a first-line treatment for metastatic melanoma, it’s used in combination with Merck’s Keytruda. Studies have shown that 56 percent of melanoma patients treated with the combination responded to the therapy for a median 45 weeks, and their cancer didn’t progress for a median 12.4 months. The FDA probably won’t approve the drug until late in the year, given the hurdles still facing Incyte.

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CHD's picture
Replies 4
Last reply 1/18/2018 - 11:00am

Hi all (and Celeste in particular :) ):

MPIP member here for the past few years with previous vulvar mucosal melanoma.  Just had a quick question for you. :)  I love your blog and your posts here are always so informative.  Of course, I am happy for anyone with information or experience to chime in, but I am wondering about lung metastasis and low sodium.  My sodium has been low my last 2 blood draws over the past 3 months.  I actually just noticed and put these two things together tonight:  I have had a chronic cough the past 2 months and kind of a weird dull bronchitis-like chest pain, and my oncologist seemed a little concerned about my low sodium levels and just ordered more blood work on the 28th of December, which came back with low sodium yet again.

 

Google is  never my friend!

 

So, seeing that low sodium can be associated with lung cancers, would you by any chance have any links to decent information about this connection (if any) or any information?  I had to reschedule my visit with her out 3 weeks and this cough is starting to get on my nerves.  Of course, it is also cold season and I have been sick off and on and we all know how easy it is to worry about these things for no good reason except that we have had melanoma and our oncologists have told us our prognosis is poor, right? :)

 

But would appreciate any facts on sodium and melanoma in the lungs, if you happen to have any.  I refuse to Google any further but it is going to nag at me until my visit.  BTW, my BUN is also slightly low.  Everything else lab wise has been normal except high-normal platelets a few months ago.  None of which seemed concerning to anyone until this drop in sodium that seems to be persisting.  Well, and swollen lymph nodes in the groin which prompted a CT and ultrasound of the inguinal/abdominal regions, the results of which are not yet known to me.  Somehow, being almost 5 years out from my initial diagnosis, I am getting rather immune to the panic that used to set in at the least little abnormality, but the consistent low sodium/chronic cough thing has got me kind of on edge the past few days.

 

Hope all is well with you!

 

BTW, any and all reassurance or even shared stories that are less than reassuring are always appreciated.  This group is wonderful and you are all so appreciated.

 

My best to all of you,

Cheri

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Seashelly's picture
Replies 4
Last reply 1/18/2018 - 12:10am

Hello,

I am currently concerned about a brownish/blackish growth on my 4th right toe. I think I have had it since August 2017, but didn't think too much of it. Kept thinking it would go away or grow out. I was recently at the doctor for an unrelated illness and showed her my toe. She said it "didn't look worrisome" to her, but any atypical markings on the foot immediately needs to be seen and evaluated by a dermatologist. She said it could be a bruise, it could be a mole, it could be blood, or it could be cancer.

I have an appointment in 3 weeks. I am feeling very anxious and worrying if this is actually subungual melanoma. Here are a couple of photos of my toe:

https://m.imgur.com/a/yccER

I don't remember any major trauma or injury to my toe, but that doesn't mean I didn't stub it or drop something on it at some point. I just don't remember. I think that the spot has either grown or moved up - when I initially noticed it last year, I think it was mostly hugging my cuticle and that's one of the reasons I brushed it off. Now I think it is bigger, but I don't know if it is growing out (like a bruise or hematoma) or growing bigger (like a melanoma).

Anyway, I was wondering if anyone has any insight as to what they think this may be on my toe. Again, I am super stressed and anxious and my mind is tumbling out of control. I understand melanoma is deadly and I fear for the future for me and my family.

Thank you very much for your thoughts and time!

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Dasupah14's picture
Replies 4
Last reply 1/17/2018 - 9:59pm
Replies by: casagrayson, Dasupah14, Anonymous

My son of 14 years old had a mole lightening over 3 years ago. It was a normal black mole he'd always had until it turned pink. After turning pink a half started to turn white and in the end the other half turned white. The mole ended up completely white after 4 months of losing its colour. It's passed 3 years and we were not worried. We commented it to his pediatrician the other day and said that changes in hormones can cause this things and that his mole is not suspicious. But I've never heard about regression in a teen. It wasn't a halo Nevus. And his mole now doesn't present characteristics of the ABCDE. Can this things occur in teens? I've heard that changes in moles of teens are very common but a regression?

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Ajwells's picture
Replies 6
Last reply 1/17/2018 - 7:54pm
Replies by: Rob578, landlover, kathycmc, Gene_S, Cathy M, Anonymous

I know that some temporary nerve damage was going to happen, and the risk for permanent was there. I'm just a little surprised about some of the things that were affected. 

My neck dissection was Monday.  Boy was that a lot worse than I had originally expected. Large incision down my neck, about 10 inches from my ear to my collar bone.  

They took out 27 lymph nodes. And I should probably note that my labs came back CLEAR!!  Not a single little node had any cancer in them!  So no more surgery and I'll be ready for immunotherapy once I'm all healed up!  

But back to the point.  I woke up from the surgery with very little control over the left side of my face. Doctors weren't worried about the facial paralysis being permanent. Every time they came in they made me make a kissy face and every time they did they were happy with whatever happened. My smile looks like popeye right now. Just the left half of my bottom lip won't move at all. It's really strange.  They did note that the numbness in my left ear is very possibly permanent. They had to peel s lymph node off of that nerve. Of course my neck is stiff. I can't really move it side to side and I can't turn my head to the left at all. It isn't particularly painful, my neck just won't let me turn it.

and now for the weird part.  The range of motion in my left shoulder is terrible. I can't lift it past like 80 degrees up. I can't reach for things. I can't lift it to tie my hair up. I try and stretch and loosen it up, which helps out some, especially right away in the morning.  

My doctor never mentioned the possibility of having to do physical therapy for anything like this, but this seems like the type of thing that would require some. My mom just went through some shoulder surgery and she was having the same range of motion issues I'm having now and she goes twice a week for PT.  

has anyone else dealt with weird spread out nerve damage from surgery? especially in the neck.  

Also one more time: MY LABS WERE CLEAR!!!!!!!  

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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I only ask because, everywhere I look, it says that the biopsy has little to do with overall longevity. So, has anyone just commenced with the wide excision, and then the follow-up care (i.e., lymph node palpation, skin checks, etc every 3 months). Just wondering. Thanks!

Jen

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Replies by: Treadlightly, BrianP

Hi all,

I was diagnosed with stage IIA melanoma in September 2017. The mole was on my lower left leg - 2.5 mm but not ulcerated. I had a WLE and SLNB at the end of September and happy to say i had clean margins and no lymph node involvement. They told me that my first appointment with the oncologist in follow up would be in January- and it's coming up this week. (I did see my dermatologist in November for a full body check and all looks good.) I'm a 38-year-old mother of three who just had twins two months ago, so while I am exhausted I'm otherwise in good health!

I'm wondering if any of you have guidance or advice for the questions I should ask my oncologist to make sure I am getting the best treatment possible. Also what should I expect from this appointment? Many thanks for your help and advice!

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Jagsean's picture
Replies 4
Last reply 1/16/2018 - 7:16pm
Replies by: Jagsean, JRM, Anonymous, mel man sd

Hello there

I hope someone can help

about a year ago i had what looked like a fungal nail infection, so i used curanail for a few months, the nail was yellow and fell off.

it grew back and looks very like it has a brown patch under it with a black line in.

I got very upset a week ago and called NHS 111 who said make an appointment wiht my GP.

I went to the GP and she googled it and said it does not look like it but give us a nail clipping and we will test for fugal infection.

I told her a really need to know and she wrote down check for it too which is not how they check i dont think.

she also sent me for some blood tests as they need to know liver and kidney function before putting me on medication to treat a fungal infection.

few days went by and the nerves are getting worse.

So went back to the GP and saw someone else who really didnt want to refer me to the dermatologist nd said can you not wait for the tests, I explained how scared I am and if its bad its been there a year and time is important,

He said I will write to them but they might not want to see you,

This is appaulng what can I do? In the UK can i have a private test? do normal mole clinics test for it?

Private doctor and appointment?

Any thoughs

Thanks all, my doctor has really let me down and I cannot get them to help

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/16/2018 - 12:46pm

Happened across a Canadian Melanoma site called, "Save Your Skin" started by a woman who was diagnosed at Stage IV in 2003. 

One thing I found interesting is this series of patient stories some fairly new and others long term survivors in their pictures and words ("Melanoma through my Lens").  Reminded me of how I felt while in the thick of the fight and I felt it might be inspirational to others on this board:

https://saveyourskin.ca/melanoma-through-my-lens/ 

Luke 1:37

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Bradley75's picture
Replies 7
Last reply 1/16/2018 - 9:59am

Hi everyone,

I had my first PET scan and MRI since my surgery in late October of this year.  The scans got moved up a few weeks because of two suspicious lumps I found on the back of my head.  After scans and a ultrasound guided needle biopsy, the lumps are not melanoma.  They are reactive lymph nodes.  I have had those a few times over the years and each time they cause more anxiety than they should. 

My PET shows no evidence of disease anywhere in my body.  I never thought I would be able to say that again.  The plan is to continue Keytruda every three weeks and re-scan in late March.  It has been a wild ride.  Nice to start the new year with great news.

Brad

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jjk17's picture
Replies 6
Last reply 1/16/2018 - 9:12am

The past 3 months have been an emotional roller coaster to say the least. After having a plan in tack, I was supposed to start tomorrow on my clinical trial, Nivo/Ipi. Got the word today from my Oncologist at Mayo Clinic that the drug company that had my tissue, needed more, due to the fact there were dead cells. There were dead cells, because my tissue samples sat in their lab over the holidays with no-one there testing them. After a long talk with my Oncologist we came up with Plan B. Being treated with Nivo every 2 weeks. I am very stressed to say the least. Looking for positive thoughts on this. Maybe this is all happening for a reason. I just needed to vent! Thanks in advance:(

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CPM0720's picture
Replies 4
Last reply 1/16/2018 - 8:21am

First of all I want to thank those who posted on my last post. My husband has Stage IV melanoma and was on Opdivo/Yervoy. He showed progression and spreading after 12 weeks so he was moved to the Taf/Mek combo. 

We were not sure about everything at first but after reading the CT scan and more discussions with his doctor, we felt this was the correct next step.

with that said, my husband has been on Tafinlar for  about 3 weeks and Mekinist for 2 1/2 (the delay was due to Christmas and the dr wanting him to not have too many side effects for the holiday.) 

He woke up today with what he calls “hazy” vision. His eyes are also red. We called the dr and she wants to hold the meds for a few days until he can see an eye doctor and she is being overly cautious (her words) and scheduling a Brain MRI. (He has not had brain Mets so far.)

i have read a little online and it seems that it is more than likely something that can be treated with possibly steroid drops and maybe lower doses of the meds but wanted to see if anyone had personal experience. It clearly scared and worried us as this combo seems to be really working and we would be super disappointed if he had to go off it completely.. any reply is appreciated 

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ThinkingPositive's picture
Replies 1
Last reply 1/15/2018 - 7:10pm
Replies by: Janner

Does anyone have stories to tell about lentigo melanoma? My doctors told me my risks are low for recurrance but I still need to be  vigilant with every 3 month skin checks. I don't have many moles but lots of freckles and the age spots associated with sun damage on my face, hands  and back (I am 61). The research does not answer the question of am I more at risk for the other forms of melanoma. 

Was lentigo maligna melanoma IIA on nose. WLE 10/30/17and graft 11/10/17. 

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Anonymous's picture
Anonymous
Replies 4
Last reply 1/15/2018 - 5:59pm
Replies by: lep, Janner, Mckown5254

So I currently do not have Melanoma and never have. I am 18 years old and I am looking for some advice on whether I need to get my mole checked my a doctor, and i figured what better place to ask for an opinion? I have had this mole on my upper arm since I was a toddler. It has never caused any problems, and due to its size (1.2cm) my local doctor told me, when I was  about 10 years old, that I would probably have to get it removed for precautions later in life. Well recently I have noticed the edges blurring a little bit, and it is slightly changing shape (it used to be pretty much a perfect circle). It also has a couple of long black hairs growing out of the center which were never there. It is pale brown in colour and the colour seems pretty even overall.My mother said that there's no difference, but I can see it and have a gut feeling that it's changing. I have very pale skin and although I am very rarely in the sun I have about 50 moles covering my body. I may just be over reacting but I can't get it off my mind! Thank you :)

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