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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AlphaDetail, a Symphony Health Solutions company specializing in healthcare research, is currently interviewing melanoma patients about treatment programs, medications, and quality of life. They are looking for patients who are Stage IIIb, Stage IIIc, and Stage IV.

The telephone interview is 60 minutes and you will need a computer with high speed internet during the interview. They are also looking for individuals willing to participate via Webcam. They will send the webcam via mail and you will be allowed to keep it after your interview ($75 value).

Interested in participating? Go to:  www.alphadetail.com/mrf

You will need to complete a pre-screen survey. If you qualify, you will be directed to a calendar to select the best day and time. If you complete the telephone interview, you will be paid $150. If you elect to be interviewed via Webcam, you will be paid $200 (plus the $75 Webcam).

The telephone interviews will be scheduled September 12-17. (Limited times may be available on certain days.)

IMPORTANT NOTE:  If you have already agreed to participate in this research via another source, we cannot interview or pay you twice. 

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nlavine925's picture
Replies 21
Last reply 9/17/2014 - 1:14am

Hi there,

I was diagnosed stage 3a in May and had the lymph node dissection in early June. I decided against Interferon and am going with the wait and watch for now.

The problem is that my immune system seems unable to stand up to anything! I'll admit that I have an 11-month old in daycare and he brings home lots of germs, but before the two surgeries earlier this year, I was able to avoid getting the colds and other bugs he brought home.

Has anyone had anything similar to this happen? Are there things that I can do to strengthen my immune system other that the typical things like getting sleep, eating well, exercising, etc. I do as much of that as I can, but it doesn't seem to do much good. I know my body went through quite a trauma and I may just need some time to heal. But I'm impatient and need to chase an almost toddler and figured someone else might have ideas to share.

Thanks so much!

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liam1209's picture
Replies 5
Last reply 9/10/2014 - 1:58am

Please let me know emails to the following doctors.  Also, If I only list the Hospital please suggest top doctor and his email if you have.  I am trying to figure out what the 1st treatment for my father will be.  Deciding whether to go ipi then anti PD-1 or if clinical trial.  

Dr. Rosenberg at NIH

Rr. Lynn schuchter at penn

Dr. weber at moffit. 

Univ of Pennsylvania

fred hutchinson 

md anderson

dukes morris

danna farber 

sloan kettering/ Dr. Wolchok

johns hopkins

mass general 

Stanford: Kim Margolin

Boston: Mike Atkins

Tampa: Jeff Webber

Nashville: Jeff Sosman

 

Thank you so much for your help!!! 

 

Liam 

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Anonymous's picture
Anonymous
Replies 8
Last reply 9/8/2014 - 9:47pm

Just wondering people's thoughts on what is the best course of action. If melanoma is detected in a major organ (lung, liver, spleen, etc) and it is resectable, is that usually the best route to take - go in and get rid of it?  Or would one consider some type of therapy (I.e. Yervoy, ipi, etc.)?  Not sure of there are any residual affects if it is just taken out. 

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rjr11273's picture
Replies 1
Last reply 9/8/2014 - 11:23pm
Replies by: Melissag0624

I had a 2.1mm tumor removed with wide excision from just above my right knee on August 19 and an SLND done as well with these results: superficial spreading melanoma with nevoid features, maximum tumor thickness 2.1mm, ulceration present, mitotic rate =4, 4 of 4 lymph nodes with micromatasteses. I am awaiting results of scans done on Friday

i am scheduled for further lymph node dissection on the 24th. Dr. Flaherty at MGH is recommending I begin pegylated interferon weekly self injections 4 weeks later due to the increased RFS for the subset of positive lymph node and tumor ulceration in the large trial done in Europe. Assuming the scans come back with no measurable metastises. I am also changing my blood pressure medicine to propranolol, just in case there is a benefit that will be tested soon at the university of Geneva clinical trial

my questions are, has any one done the weekly pegylated interferon treatment? What were the side effects you experienced and how well did you tolerate them? Did you have the side effects every day? How long did you stay with the treatments?

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Ninniditti's picture
Replies 5
Last reply 9/8/2014 - 5:52am
Hi! 
Has someone here had TIL therapy. I have not read about someone having good results from it. I am not sure if I dare to have it. I have done IPI and NIVO with no result. 
 

Inger

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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 10
Last reply 9/26/2014 - 10:32am

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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