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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Melissa M's picture
Replies 6
Last reply 8/13/2018 - 7:24pm

I wanted to share some good news (and hopefully give others some hope). Next week I will celebrate being one year cancer free! I've been reflecting on this journey a lot, and I am thankful for all of the support I've received from this community. I'm thankful for the excellent care I received from my team, and I plan to celebrate this milestone next week!

Wishing you all many milestones that bring joy and gratitude. :)

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/14/2018 - 12:59pm
Replies by: Anonymous, geenapec, AN8

Hello!

 I am a 38 year old female who recently had a full body check.   The doctor ound a 5mm lesion which has an atypical vascular pattern noted within, dermoscopically atypical, with question etiology. The doctor xompleted an excisional biospy in the office and sent for pathologhy.

Fast forward a week...dr calls and explains I will need more surgery.  The path came back as Atypical , abnormal Spitz.  In reading online I am overwhelmed and just loooking for some more info. 

Thanks  in advance for the help.

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Kfred's picture
Replies 10
Last reply 8/11/2018 - 7:25am

Hi everyone,

My husband has had a mole on the back of his arm for over 20 years. Never paid much attention to it. 2 weeks ago he show it to me and tells me it has grown a lump and is itching. I took one look at it and freaked! We made an appt to see a mohs derm and went in Monday 08/06/18. The Doctor took a sample and said that he would send it for pathology report. He also made it clear that it is deffinatley Melanoma and in his opinion he would not be able to peform the surgey himself and once we recieve the pathology report he would be referring us to an oncologist surgeon.We are waiting for the results of the report and are pretty scared! I sure wish the results would come in! If I knew how to post a pic I could show you why Derm says it is melanoma just by looking at it.

 

Thanks.

Karen


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Savymoo23's picture
Replies 9
Last reply 8/11/2018 - 5:45pm

Hey everyone, I just have to get this out there because I am struggling. I have such high anxiety that I can't sleep at night and I'm having such a hard time being a mom right now to my babies and it's breaking my heart.I have no patience and I'm so exhausted I can hardly do anything. I just carry such burdon with me right now. A positive thing though is my work rallied together and all donated vacation time so that I can take all next week off and my mother in law bought all brand new clothes for all the kids and new shoes. Sorry for the random rant, I just can't clear my head. Maybe a weekend by the river will help. Thanks for the vent guys heart

Savannah Price

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BillB's picture
Replies 7
Last reply 8/10/2018 - 7:06pm

I completed Keytruda Treatment #18 and my three month CT scan yesterday, results of scans today still NED. Tomorrow is my one year anniversary( if we want to think of it that way) of advancing to stage IV with nodules in my right lung. The harder decision I’m dealing with right now is how long to stay on Keytruda. I had a very fast complete response and my doctors felt I should have went off last January. I have now had  four clean scans. I’m going to start extending out the treatments dates to five weeks until the end of the year then make a decision whether to stop or not. I have no basis for extending the time periods except for it helps my brain cope with it a little better and keeps some Keytruda in my system. My oncologist won’t make me  go off but because of the rapid and complete response believes it’s OK to stop. I go to MSK for treatment and these are some of the top melanoma specialist in the country so even though I trust there advice, my brain seems reluctant to stop treatment. This will certainly keep my brain busy for the next three months. So that’s the good/ great news.

Not so great news I also got notified today that I tested positive for Lyme disease, and there is a good possibility that I got the Zika virus during my fishing trip to Costa Rica in late June. Will find out those test results next week. 

Overall a great day and I do wish that everyone fighting this disease keeps moving forward. Also, a great thanks to everyone on this board for being so participative, I learn everyday and truly wish everyone the best!

Bill

 

 

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Savymoo23's picture
Replies 6
Last reply 8/13/2018 - 1:07pm

Hey everyone, I just wanted to give y'all an update.

I meet with my surgeon yesterday and went over our game plan/treatment plan. He has decided he's getting me into surgery this coming Monday the 13th. They are going to put me under and start me on my back. They are going to do the SNB on my right armpit and in my groin around my right side. Then they plan to flip me over on my stomach and do my procedure on my back to try and get nice clean cancer free margins. He said I will have quite a bit of stables because suters won't hold quite as well as staples in such a high muscle tension area. I am very glad to have a game plan but also very nervous to go under the knife and how I will feel out of surgery. I have three toddlers and work full time and am a wife so I hope I can juggle everything. Wish me all the luck! I'll keep y'all updated next week <3

Savannah Price

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TexMelanomex's picture
Replies 8
Last reply 8/11/2018 - 5:36pm

Hello my mela-homies! I hope this finds all of you waging war with the heart of the fiercest Warriors! 

Just a quick update, round 15 complete, thyroid stable with 50mcgs of levothyroxine daily, and no notable change in fatigue or joint pain. Like I said before, a little battle damage sure beats the alternative! 

Next round of scans in October so I have a few months of tx as usual and it looks like we are going the full two years on Pembro even though NED now for about 3 months...I'll take that insurance policy and currently my only weapon in the arsenal. 

Please stay strong warriors, stay in this fight...it can be won.

Tex

 

Tex

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/10/2018 - 6:30pm

Hey everyone, I just wanted to give y'all an update.

I meet with my surgeon yesterday and went over our game plan/treatment plan. He has decided he's getting me into surgery this coming Monday the 13th. They are going to put me under and start me on my back. They are going to do the SNB on my right armpit and in my groin around my right side. Then they plan to flip me over on my stomach and do my procedure on my back to try and get nice clean cancer free margins. He said I will have quite a bit of stables because suters won't hold quite as well as staples in such a high muscle tension area. I am very glad to have a game plan but also very nervous to go under the knife and how I will feel out of surgery. I have three toddlers and work full time and am a wife so I hope I can juggle everything. Wish me all the luck! I'll keep y'all updated next week <3

Savannah Price

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Jason7979's picture
Replies 2
Last reply 8/10/2018 - 10:30pm

Hi to all, first off thanks to everyone for all the post I've read over the past few weeks.
Monday my brother was readmitted to the hospital after a week back at the house. The last several days he's not eating again, can't hold anything down other than water. Yesterday the Doctors came in and said his body is to week to start any treatment and he has days to a few weeks left to live. He doesn't have insurance or money so that's not helping his diagnosis at ALL. I still believe God is in control and he will turn around. My brother said he doesn't want to die and is fighting through this. Does anyone know of anything that would help get him turned around and going back in the right direction? Any guidance, information, anything would be greatly appreciated.
Thanks in advance and God bless everyone that's on either side of cancer, the patients and caregivers.

Jason George

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lkb's picture
Replies 4
Last reply 8/9/2018 - 11:01pm
Replies by: BillB, ed williams, lkb

Hi all,

My oncologist is on vacation for two weeks (short for her, long for me). My recent scan showed recurrence in lymph nodes. Considering another partial neck dissection. Does anyone know whether tumors, once excised, can be tested for probable response to Keytruda? Or must tumors remain in the body to test the response to Keytruda?

With thanks,

Lisa

Primary scalp lesion excised in October 2017; SLNB removed and revealed two positive nodes in neck. Stage IIIA. July 2018 scan shows five positive nodes in same neck location.

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KellyH's picture
Replies 4
Last reply 8/10/2018 - 5:31pm

Hi everyone!!! 

My son just had his 6th Nivo treatment. We are 3 months in. The oncologist told us the 3-6 month mark would be the “hot spot” so to speak and he was right. My son has had no side effects up until now but the last week or so he has had very little appetite, definitely more tired, and what concerns me the most is some abdominal cramping...he said it feels like gas pains. He has had no diarrhea, no nausea or vomiting, and all his  labwork looks good so the doctors are ok with just watching at this point. He did lose 5 pounds in the last 2 weeks and we are going to try smaller more frequent meals even though he really is not hungry. The abdominal cramping is what has me the most worried....so my question is did anyone have just abdominal cramping that did not advance to more major GI side effects???

I told him he needs to tell me every time he has them and keep me posted if anything changes...but I am hoping this is temporary and goes away without progressing any further. 

Thanks for your help!!! 

kelly :)

 

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hawkdawg's picture
Replies 7
Last reply 8/8/2018 - 11:40pm

We are waiting for our pathology report on my wife's cheek melanoma and associated SNLB.  At the time, they told us it should take "a week."  This is now Day 12, not counting surgery day.  How long did you all have to wait to get the report?  The waiting is awful.  The hospital insists it has no significance to the ultimate diagnosis, but also offers basically just a shoulder shrug on the timing issue... 

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snelsonholmdahl's picture
Replies 1
Last reply 8/8/2018 - 11:43am
Replies by: AN8

I had a superficial spreading mealanoma with a depth of 0.2mm, staged 1a, 0 micotic rate and no ulceration.  This was two years ago.

 

I have found good datea on recurrence rates but I'm curious what are the odds of developing a different type of melanoma?  Feel free to direct me to research etc.

 

This is not an urgent question, but for my own educaions.  Thanks in advance!

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Dreaf01's picture
Replies 1
Last reply 8/9/2018 - 10:20pm
Replies by: Lucas

Hello! I am coming here now for support and little guidance. In 2016 I was dx will 1.5mm MM on my right upper thigh, mitotic rate of 4, negative slnb. Fast forward to Dec. 2017 where I felt a small rubbery lump near the incision, bx came back scar tissue. Since the day of that biopsy a hard lump has formed in the same area. I had a PET scan Thursday and found out today the lump lit up on the PET. The whole time I was thinking it was just skin trauma from the biopsy in Dec. the oncologist said scar tissue wouldn’t light up on a PET. So back to my dermatologist who wants to excise it. If it comes back positive for MM what would the next steps be? Would this be treated as like my first MM because it’s in the same place? He said all my internal organs came back clear. Any advise would be appreciated because I am kind of alone with all this. Thank you warriors ❤️.

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justinjc225's picture
Replies 8
Last reply 8/9/2018 - 1:00am
Replies by: justinjc225, Anonymous, Savymoo23

I got this on my neck two weeks ago I thought it was a pimple. I went to the doctor he said could be Bacteria he prescribed me fucidin cream. I’m scared this is Nodular Melanoma it hasn’t grown Here’s some pictures https://imgur.com/a/f1qjsel

I am going to go see my doctor again this friday its red but hasnt grown my girlfriend said it looks like a cyst because she has a cyst but im not sure cyst are red just want some advice on what this looks like

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