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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Gibsongirl's picture
Replies 16
Last reply 6/15/2017 - 11:18am

Hello everyone, I'm a 37yo female who developed a small black shiny mole a few months ago. It was very tiny but was not a mole that changed, just popped up. I really just knew when I saw it. (I'm a midwife and have been in health care as a nurse for years).

They did a shave biopsy, which in hindsight I realize wasn't the best course of action on Monday the 6th. I just knew it was melanoma but the shave was pretty deep and I figured it would be gone. I was surprised when later that evening I took the band aid off and there was the same thing, same size in the same spot. I panicked knowing this can't be good. I got the call today 9 days later that yes it is mm. It was just shy of 2mm in the biopsy and obviously there is more still in my thigh. I'm scheduled for Tuesday the 21st for I guess what is a wide excision. They said they'd be taking a large area down to the muscle and I'd have multiple internal and external stitches.

The report said mm in situ. I ask her how they could determine that when I still have some in my leg. She didn't know and the surgeon is on vacay and won't be back until Monday but without WE they can't grade it? They won't be doing any lymph node tests until the lab results come back and say it is needed, but from what I have read it should be done at the same time?

If anyone has any advice and possibly if I should run to a different practice (I have national insurance that is good thankfully). I'm a mom to a 6yo special needs daughter and I need to make sure I'm doing everything right. I'm beside myself. I'd feel better if it weren't so deep. Someone with more knowledge please help, and be honest. Thank you in advance.

GG

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CHD's picture
Replies 1
Last reply 6/15/2017 - 2:00am
Replies by: CindyCo

Does anyone have a link to the Facebook vulvar/vaginal melanoma support group started by Ed Everest in 2013?  I think Jerry was a part of it too (?).  : (  Is the group still active?  Doing a Facebook search is not getting me anywhere.  Wondering if anyone here knows anything about it?

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Bubbles's picture
Replies 2
Last reply 6/14/2017 - 3:18pm
Replies by: Scooby123, ToddG

This study has very small numbers...but when looking for the next great treatment...you gotta start somewhere.  Here's to work that is ongoing and work that still needs to be done:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-erk-inhibitor-ulixertinib-bvd.html

Thanks ratties! celeste

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ronanda's picture
Replies 4
Last reply 6/14/2017 - 12:00pm

Hello! I am curious to see opinions about a new mole that appeared by my belly button. Please see my profile photo. ... my MD quickly looked and dismissed this one. He will not refer to a dermatologist. I know that diagnosis cannot be made via photo and only professionals can, but if this was your new mole, would you agree with him and drop it, or pursue the issue further? I appreciate your opinions greatly!

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Shaneswife's picture
Replies 11
Last reply 6/14/2017 - 10:38am

This beast has taken over my dear Shane's mind. It's like he's already gone yet I see the shell of his body everyday. His deteriorating brain is so symptomatic yet somehow his body keeps pushing on. It's becoming more and more difficult to manage Shane's actions. He's begun to wander at night so I'm trying to get a PSW here at night to look after him. Hopefully will have this in place after the hospice physician comes today. Shane wanted to pass at home but there are major safety concerns now with his dementia like symptoms. We have a new grandson due in 3 weeks that will be living with us. And a 3 year old grandson who is here biweekly. I'm scared for the kids. I promised shane I wouldn't put him in a hospice the last night he was mentally with us. But that is becoming more of a reality everyday. My heart is shattered to see the love of my life gone before my very eyes and yet his body is still here. 

I heard a nurse say he had 42 brain tumors over 1cm. How does a brain even fit in there with that many tumors. And keep his body functioning?

I've been up all night chasing shane around and trying to herd him back to bed. I'm so exhausted that I don't know how I'm gonna continue to do this. 

 

Janis

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Gene_S's picture
Replies 5
Last reply 6/14/2017 - 2:52am
Replies by: raun cesar, betsyl, Bubbles, Anonymous, miaka618

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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smiller's picture
Replies 11
Last reply 6/13/2017 - 10:27pm

 My husband made it through three treatments on the opdivo/yervoy combo.  Had to stop because of the side effects he was experiencing.  We are meeting with his doctor next Wednesday to discuss other options. He mentioned trying Keytruda or going ahead with opdivo alone.  Any help/suggestions will be helpful in making a decision.  By the way--the treatments that he had did make a difference in the size of the tumors--they all shrunk except adrenal glands and doctor said they still had the possibility of shrinking.

 I learn so much from this board--thanks to all who post. I rejoice when I read the good news of someone responding to their treatment and I am sad when someone has to post that treatment has to stop because it didn't help.

Thank you!

Jim's wife

 

 

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Scooby123's picture
Replies 6
Last reply 6/13/2017 - 8:04pm

Hi all, i recent put on my pet results, from starting ipp in 2015 where my cancer was which was liver , lungs, heart, and probs dots around. Ippi shrunk my tumours all over by 50 %. so plan was watch and wait see how long i respond to it. In 2016 i had a 5mm brain met which i was told at the time probably ippi did not stop it in track. Had Gamma Knife for that and thank god clear scan since 2016 on brain.

 

Had a pet scan which showed every where my cancer was prior starting ippi no intake on scan which is good news. But lymph nodes in chest 2 nodes up on intake. i am planned to have it biopsy on the nodes to see if mel and if yes Radiopherapy we are looking at to treat nodes. My consultant does not want to give me immunotherapy due i think stable eles where and just new nodes which lit up if mel.

My scans from starting treatment never showed any lymph nodes up in chest , so from starting ippi i have progressed but because the areas when had ippi was treated and not changed at all thats why he does not want to give treatment than radiotherapy for nodes.

Do you agree or should i push for immunotherapy or will radiotherapy kill the cancer in nodes. I just dont want to keep getting new areas each year lit up and then hard to control it. Part of me understands but then part of me does not

Please can i have your advice if had this situation or what would you guys do .

Thanks Guys

Scooby x

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mooseman1824's picture
Replies 5
Last reply 6/13/2017 - 6:57pm

All,
I just signed up for this community because right now I am in a bit of shock. I was just diagnosed on Wednesday with Melanoma in situ, which I guess is the best-case scenario. At the advise of my father who was diagnosed with Stage 4 Non-Hodgkin’s lymphoma in 2014, I have tried to limit my Google searches. Luckily my father is in remission, so even though he hasn't had melanoma, he has went through the shock of being diagnosed with cancer. He said that the biggest mistake that he made when he was first diagnosed was spending hours upon hours online reading and researching. At any rate, here is what I’ve went through the past few weeks...

My wife was worried about a spot on my upper thigh, and she wanted me to get it checked out. I told her not to worry about it because I’ve had it for as long as I remember. She said that she knew I had it, but she thought it looked different. I got into see a doctor the next day, which was May 26th (my doctor was out so I saw someone else). The doctor said she was very concerned about the spot, and that she thought it could be melanoma. She really wanted me to see a dermatologist because of the number of moles that I have on my back. The dermatologist in their building had a 3-4 month wait time, and she said it couldn’t wait that long so she could do it in 3 weeks which was her next available. Maybe this is standard procedure, but I don’t feel like a doctor should say that they fear you have melanoma, but you have to wait 3 weeks for the biopsy. As soon as I got home and spoke with my wife we both agreed that I needed to try to see someone sooner. I started calling around and I got lucky after a few calls as this dermatologist had an opening on May 30th. I went to my appointment and I REALLY liked this doctor. He spent a lot of time with me, and answered all of my questions. He did a screening of my body, and he agreed that the spot should have a biopsy along with one on my back. That said, he said he really didn’t thing the spot on my leg was melanoma. He told me that they would call me in 7-10 days with the results, and if all went well he would see me in a year for a follow up. Well, this past Wednesday the doctor called me and told me the one on my back was dysplastic nevi, and that he would like to do a wide excision just to be safe. He then told me that the spot on my leg was moderate melanoma in situ, and that I would also need to do a wide excision around that to get clear margins. He was very comforting, and stayed on the phone with me for well over 30 minutes. He knew how my wife pushed me to get it checked, and told me to give her a big hug because she likely saved my life (because I had no intentions of ever getting the spot checked out). My surgery is scheduled for June 20th, which I will be glad when that day is here.

So I am happy with this doctor and everything that he has done. I feel lucky that we caught it early, but my worrying is coming from the fact that he didn’t think the one on my leg was melanoma so what if he is wrong about one of the others? I have probably around 200+ moles on my back and chest alone. To his credit, he did have it biopsied. There are a few that I don’t like because one has gotten larger and darker over time, and then there is another that is a newer one that has an irregular shape. I discussed those with my dermatologist, but he wasn’t concerned about those. So I was wondering what you guys would do in my situation? I’ve read that there are non-invasive ways such as the woods lamp that allow for doctors to look for suspicious spots. I guess it’s not practical to test every mole on my body, but it would be nice if there is another way to confirm that there aren’t any other moles that need to be biopsied. I’ve also thought about going to another dermatologist just to get a second opinion and confirm that no other spots should be checked. I know my situation isn’t nearly as serious as most people on here, but has had a bit impact on me. I figured I was to young to have cancer (I'm 32), and figured since I didn’t tan it was very unlikely that I had skin cancer. Since I was diagnosed, I found out that my grandpa had melanoma before he had passed away from lung cancer, my uncle had it as well, and my cousin had melanoma in 2004, and in 2016 had basal and squamous cell cancer. Any advise on what I can do to ease my mind in respect to monitoring my moles, and ensuring the dermatologist didn’t miss anything would be greatly appreciated.

Thanks,
BD

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Nemesis's picture
Replies 8
Last reply 6/13/2017 - 12:22am
Replies by: miaka618, Janner, Nemesis, UBContributor, Anonymous

Summer finally came and, as such, I have  started to apply sun screen (spf 100) to my exposed areas every two hours. Despite that, and despite trying to stay away from the sun as much as possible, my cheeks have reddened today.

 What am I doing wrong? Should I apply more often? Only come out at night? Cover myself completely?

 

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Jesscarlett's picture
Replies 17
Last reply 6/12/2017 - 7:54pm

Hello everybody. I just made this account in hopes of getting some advice. I am a 22 year old woman, recently, I noticed a rash-like spot close to my collarbones. I noticed this about 3 days ago when I came home from work and took my shirt off. I was scratching my chest and neck area and suddenly it hurt on a certain spot. That's when I saw this very reddish spot. I thought I has scratched a pimple but soon noticed that it wasn't a pimple and it looked sort of like a rash. I let it be. Next day I look at it and it is now more of a pink color and it seemed to be a bit bigger. It feels rough to the touch and it doesn't itch anymore. It also appears to be a bit elevated than the rest of my skin. Today it seemed to have enlarged a bit more. It has a different color on the center and pink on the edges. I will post a picture so you guys can see what I am talking about and whether I should be worried or not. I googled up the symptoms and all I got was skin cancer results...I am really scared. I also have a trip from the 29th this month unt july 13th and all the dermatologists and surgeons I have tried to contact don't have any space before that time. :'(

http://imgur.com/a/F4wl9

The pictures with the blue jacket and the close-up where you can see part of the chain of my necklace were yesterday. And the one that you can only see the skin is from today. Does this look like anytype of skin cancer? Any help or advice would be appreciated.

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FaithRun's picture
Replies 2
Last reply 6/12/2017 - 3:08pm

I am now 5 days in take Mek/Taf.  Aside from the headaches and body aches it has been working fantastic!  One of my most noticeable things was the reduction and dare I say, obliteration of the tumors on my scalp!  I had over 2 dozen nodules/tumors on my scalp and all of them are gone except just a little itty bitty bump where the largest one was.  The same for my arm pit and groin.  Although I can't see or feel inside of my bones, the bone pain is greatly lessened.  There are a lot of things that I could summise or guess, but so far I think it is working. 

I did land myself in the hospital yesterday due to a fever and nasty headache.  This is a reminder to stay hydrated and even when you feel too horrible to eat and drink... do it anyway.  Due to the treatment my white blood cell count went down to 2.4.  Not great, but not bad enough to keep me in the hospital. 

 

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smyers5015's picture
Replies 3
Last reply 6/12/2017 - 11:55am

Hi,

I'm a 52yr old male, and In April I was diagnosed with metastatic melanoma, a 5.1cm tumor on one of my adrenal glands and a small 13mm tumor on the right lower lobe of my lung.  They were unable to find the primary.  Last week I received my 2nd cycle of yervoy/opdivo and have few lasting side affects... mostly fatigue but occasionally a fever or sore muscles/joints.  Although I am letting my oncologist suggest the course of action, I know there are things I can do to try and help myself, such as taking the correct vitamins and supplements to help my body fight the tumors.  Currently I'm taking a men's multi, 1000iu D3, Tumeric, and Resveratrol.  Are there any suggestions out there that could/would make this regimine more theraputic?

 

Thanks!

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