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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Replies by: BrianP

There will be a Melanoma Support Grop meeting at 6:30 at the Life With Cancer building at 8411 Pennell Street, Fairfax, VA 22031. (map it)- https://www.google.com/maps/place/8411+Pennell+St,+Fairfax,+VA+22031/@38.8634182,-77.2351737,17z/data=!3m1!4b1!4m2!3m1!1s0x89b64c816dd8a3fd:0x42190d8850b50cc4?hl=en)

A ljuncheon earlier at a different Life With Cancer location  - about nutritiona -     Cancer with a Fork-IAH 2014:
http://www.lifewithcancer.org/ajax_classDateInfo.php?classDateID=13436

 
I'm me, not a statistic. Praying to not be one for years yet.

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grandtulba's picture
Replies 4
Last reply 9/10/2014 - 5:29pm

Hi Everybody, 

Im ahmed from Cairo - Egypt, Two weeks ago we discovered that my father is suffering from metastatic melanoma.  he is 67 Years old 

What i read on the interenet is not helpfull and it's very disapointing My father didnt start the treatment yet. 
still  waiting for Bt scan. But the doctors here told him that they will give him pills for 6 months and if the  disease didnt respond to the treatming they will stop it. 

Please advice me what to do ? and where can i find melanoma specialist to bring my father to him. 

 

I highly appreciate your support 

Thanks

Ahmed

 

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Nik_1986's picture
Replies 4
Last reply 9/8/2014 - 4:29am
Replies by: Nik_1986, JerryfromFauq

Hi,

i have a mole on my right shoulder which I have been meaning to get checked for a very long time due to differences in colour and asymmetry. Today I woke from my afternoon sleep (I suffer from crohns and as a result sleep a lot) and had pain in my shoulder. When I examined the area that was painful I noticed that said mole was inflamed and red with an additional swelling aprox 7cm from said mole that has a small piece of darkened pigment in the middle but does not look like a mole. Both swellings are slightly sore to touch (I take a lot of pain killers including MST so it's hard to gauge the amount of pain) and my whole shoulder to my neck has a dull ache and it feels hot like a mild burning sensation.

i also am taking immunotherapy and methotrexate for my crohns which can increase the chance of developing cancer.

obviously I'm going to the doctor first thing on Monday morning but I was wondering if anyone can share some insight...

many thanks in advance

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Anonymous's picture
Anonymous
Replies 8
Last reply 9/17/2014 - 12:07pm

I was diagnosed with stage 2 melanoma at the beginning of August. They removed it off my back and I have about a 20 inch scar(could careless it's gone). They removed three lymph nodes each side with 3 of them came back positive.  I then was categorized as stage 3a. It's been a week ago Wednesday that I have had all my lymph nodes removed in my arm pits.  The doctor called said I am cancer free.  I go meet with my oncologist for the first time next week to find out the next step. I just feel like I should do something take something,  I am so afraid they are going to tell me to just get the scans since it is gone. I try not to google because it really does scare me. They keep telling me it can come back    Has anyone had a similar experience and what did you do?  

 

Thank you

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Anonymous's picture
Anonymous
Replies 0
Question: does "no microscopic sattelites were seen and no lymphatic invasion" mea that it's less likely that there is a rogue cell on it's way throughout my body?

 

Also, does the "melanocytes are extending very close" necessarily mean they didn't get it all, or just that there isn't SUFFICIENT clean margin seen?

When you DO get clean margins, are you "cured" pending recurrence?

thanks so much for your help!

 

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INOVA Supposrt Group    Fighting Cancer with a Fork-IAH 2014:

http://www.lifewithcancer.org/ajax_classDateInfo.php?classDateID=13436

I'm me, not a statistic. Praying to not be one for years yet.

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kalisama's picture
Replies 9
Last reply 9/11/2014 - 12:28pm

Am I understanding correctly that this med is only available to patients who have previously been on Yurvoy?

Thank you for clarifying. I see my onc this Monday and I want to understand as much as I can before I see him.

best,
kali

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Bruce Davis's picture
Replies 4
Last reply 9/7/2014 - 10:40pm

Feel like I'm fortunate to have been on zelboraf for 3 years with minimal side-effects although I seem to be a lot weeker with increased diarrhea lately. CT after CT show no growth in lung nodules after they shrunk by 10 X.

It just seems that people are either changing to different medicine for better results  or that Zelboraf becomes toxic.                                                                                                                                                                                                  

Myquestions are:  1. How long do people survive on Zelboraf?

                              2. What 's the next drug that works when your body has been warn down by Zelboraf?

 

Bruce 

Presently it's "Don't give up."

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fucancer44's picture
Replies 7
Last reply 9/9/2014 - 11:17pm

My name is Emily and I am asking for help regarding my beloved brother in law, Justin. He was diagnosed in January with Acral Lentiginous Melanoma which began on his pinky toe, but had progressed to his groin lymph nodes. He had his toe amputated & the lymph nodes removed and then began Interferon infusions (5 times a week for a month) in May and then subsequently underwent subcutanous interferon injections 3 times weekly. PET scans, MRI, etc... were all clear of any current disease process as of May and everything was going as well as it could when he had another PET scan in August that revealed "2 suspicious spots" on his femur and lower vertebrae. MRI and radiographs confirmed our worst fear and he indeed has 3/4 of an inch lesions on his femur and L2 vertebrae. The oncologist then stopped the interferon injections and we are now 3 weeks out from having nothing done to him. We have been met with a HUGE roadbock because everyone says there are no clinical trials we can get him into because his melanoma is "just in the bone" as if that isn't bad or something. The oncologist wants to put him on Yervoy, but has said that overall when used alone it doesn't always have the best results. I've done tons of research and I know that there are many drugs in clinical trials that are used in CONJUNCTION with Yervoy and have had great results. And just yesterday they FDA approved a new drug, "Keytruda" that typically follows Yervoy treatment and has had great results. Basically we need help. We need a melanoma specialist. Someone who will take this rare type of melanoma seriously and get him the help he so desperately deserves. He is 39 years old and has 4 children (ages 10, 7, 20 months, and 8 months) that he needs to see grow up.  We live in Oklahoma but we will travel ANYWHERE. When he was initially diagnosed we got a second opinion at MD Anderson, but so far we haven't been able to see if going back there a second time would be worth it as they are not saying they can do much at this point. PLEASE help. Any referrals or recommendations would be greatly appreciated. 

Thank you in advance. 

God bless every single one of you who rally in this fight against this horrific disease.

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jeandmike99's picture
Replies 1
Last reply 9/6/2014 - 9:31am
Replies by: Bubbles

I am new to this and was wondering if anyone has had melanoma in the stomach/intestines.  My husband was recently diagnosed and has had 4 treatments of ipi (Yervoy).  The tumor did not shrink, in fact it may have gotten larger.  The tumor is NOT Braf and we do not know what the mutation is.  Now he is receiving the new Merck drug pembrolizmab or MK-2437 ??  Not sure if that is the right number combo.  I can find very little information and wondered if anyone was currently receiving this pembro and was also not Braf positive and what results they are having.  Also he seems to run a temperature all the time so he is pretty uncomfortable.  I know that is because if is in the gut but wondering how other folks are coping with this.  Any information would be helpful.  Thanks so much and God Bless.

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5dives's picture
Replies 6
Last reply 9/7/2014 - 11:12am

Hello, 

I'm almost two months post-op for my wle / slnb and I still don't really know if my node is positive. I was told that it was, then that it wasn't, then that it "might be" trace positive. I'm incredibly baffled by the fact that this well-regarded Chicago hospital can't seem to tell me if I have a positive node or not.

Met the medical oncologist this week, who offered me 4 options, based on my "possibly positive" node: 

1. Full groin dissection (he recommended against it) 

2. A year of interferon (he said he could "go either way"with that, but that he wasn't going to push me in that direction)

3. Five years low-dose interferon (never heard of it myself, I guess I need to do some reading)

4. Do nothing

I said I was inclined to do nothing because my node was possibly negative or barely positive. He asked me if I had thought about a second opinion. He said that if it were him or his wife in my situation, he'd go to Boston or New York. 

I'm heading to Memorial Sloan-Kettering (after a PET scan) for a treatment consultation. I guess I'm mostly just venting here. I just can't believe that I can't get a clear answer on my stage. 

I respect that the doctor admits my lab results are "iffy", but I am officially going crazy with worry. 

If anybody has a thought about what I should do, I'm listening. 

 

 

http://melanomadame.blogspot.com/

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Bubbles's picture
Replies 23
Last reply 9/11/2014 - 12:26am

To all of you:

CT's of chest, neck, abdomen and pelvis along with an MRI of the brain were all negative today.

133 months post original melanoma diagnosis in 2003.  53 months Stage IV.  47 months NED.  45 months since start of my Nivolumab (BMS' anti-PD1)  trial in Tampa.  15 months since my last infusion.

I feel incredibly lucky and amazed  and grateful and strange and undeserving...to be here...and to be able to share this news with all of you.  I do so to wish you hope and strength in all your journeys and struggles.

Yours, Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/6/2014 - 9:41am
Replies by: lactansdea, Janner, Anonymous

Hi, hoping someone can translate for me:

 

Large melanocytic lesion with prominent proliferation of nests and single atypical melanocytes along the dermal epidermal junction in a lentiginous patter.  the cells have large atypical nuclei and there is focul upward migration of single melanocytes as well as melanin pigment in the cells.  The papillary dermins shows fibroplasia with an area of regression noted as there is fibrosis, increased number of vessels, scattered inflammation and melanophages.  There is also some invasion of the papillary dermis by nests of atypical melanocytic cells and there is a distinction between the atypical melanocytes inflitrating the papillary dermis and deeper nests of nevus cells which have a benign appearance so this melanoma appaers to have developed in a pre-existent dysplastic nevus.  The melanocytes have somewhat nevoid appearance, but there is a large nucleolus in each cell and lack of maturation with an occasional mitotic figure seen.  The overall appearance there is that of a malignant melanoma developing in a dysplactic nevus, level 3 invasion.  The vertical height is 0.70 mm with no ulceration and focal regression is noted.  The melanocytes are extending very close to one lateral margin of the biopsy so the lesion is not completely excised.  the mitotic index is two mistoses per one mm squared.

 

Thanks!

newbie

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Anonymous's picture
Anonymous
Replies 0

For all my Melahomies, today I received a message from Jill (Sizemore) Judd fabout a research company that was calling for Eric. Eric did a research study before he passed away and they gave him $150 for participating. This new study is paying $225 for your participation. I know how helpful that can be when you are not working or have medical bills piled up. I asked them if I could share their information and they said yes. They need many participants for phone and possibly web surveys. Here are the requirements: You must be Stage 4 with Melanoma and currently undergoing treatment. Contact 1-888-392-5000 and ask for Raina or Nancy. Or you can call Nancy direct at 212-401-7904. Study will begin next week or the week after. Good Luck! Please feel free to share this information. I talked with them and they want people that have taken a Anti-BRAF targeted chemo.

I'm me, not a statistic. Praying to not be one for years yet.

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ecc26's picture
Replies 4
Last reply 9/7/2014 - 12:04pm
Replies by: arthurjedi007, Cooper, Anonymous, Bubbles

I was on Merk's EAP and got my 5th dose on Wednesday. I've been looking, but I'm wondering, now that it's been approved, how do local oncologists go about getting access and how long does that process take? Does anyone know?

 

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