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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WendyD.'s picture
Replies 0

I am still waiting for the derm to reread my original biopsy for the melanoma. 

In God I Trustsmiley!

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Replies by: Janner

Ok, First I will say that my last two biopsy came back as just moles. Praise The Lord!!!!! :) But my question is concerning my WLE for the melanoma I had. The Derm had said something about the margins may be inadequate and I might have Mohs Surgery. Well Dr. Chung looked at the report for the WLE and didn't see any reason for further surgery. But as I look at my path report it doesn't seem to have been the appropriate margins cut out. I will tell what the report says and my question is should I get a second opinion? I want everything done right, including correct margins.

Diagnosis:

Skin,Chest,Excision

Negative for residual melanocytic lesion

Comments: After discussion with the patient, the site of this biopsy is the previous site where a malignant melanoma lesion was removed. Immunostains S100 and melan A red fail to demonstrate a melanocytic lesion in this case. This case was received and reviewed by dermatopathologists Jaweed Ansari MD.

 

Gross Description:

The specimen is recieved in formalin in a container labeled (my name), chest and consists of an ellipse of skin measuring 1.9 x 0.4cm with 0.4 cm underlying tissue. Prior to sectioning, the margins are inked blue and one tip is additionally inked orange. The specimen is serially sectioned and entirely submitted.

Thanks for the input! :)

In God I Trustsmiley!

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momof4boys's picture
Replies 1
Last reply 1/16/2014 - 7:11am
Replies by: gostan

Can anyone share what their symptoms were with colitis besides the diarrhea. Was it clearly obvious that you had it? I just finished my 4th dose of ipi and have had diarrhea for three days. Woke up this morning not feeling well. Waiting for a call back from onc. Thanks

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ciphillips's picture
Replies 3
Last reply 12/18/2017 - 9:57am

My wife had vaginal mucosal melanoma.  Treated with surgery and 3 rounds of Bio-Chemo at MD Anderson.  It now appears she may have a met to the lung.  Genetically her tumor is NRAS mutation, WT for BRAF.

I am looking for alternatives for treatment under the following circumstances:  the tumor is not surgically recetible or if it is for adjuvant treatment. 

I would also be interested in Clinical Trials.

thank you

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Replies by: Anonymous, Cooper, POW, pd1gal

Hello all,

I represent Cancer Commons, a nonprofit partner of the MRF. We aim to give patients the information they need to make the best possible treatment decisions with their care team. As part of our efforts, we're co-hosting a special program for patients and advocates at the 2014 Personalized Medicine World Conference in Silicon Valley, CA, Jan 27-28.

If you are curious about how things like molecular testing and targeted therapy are changing the treatment option landscape for patients, please join us! You will be able to learn about and discuss these and other personalized medicine topics with other patients, advocates, doctors and researchers.

Registration is available at a generously discounted fee ($100 down from $1500). Learn more about the program, topics and speakers here: http://2014sv.pmwcintl.com/patients1.php

Happy to answer any questions!

Sarah - Associate Editor at Cancer Commons

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Pink's picture
Replies 6
Last reply 1/19/2014 - 3:43pm
Replies by: Jahendry12, Pink, POW, Fen, BrianP

First brain radiation today, and the next 3 days

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triciaches's picture
Replies 10
Last reply 1/16/2014 - 8:05am
Replies by: Colleen66, BrianP, JerryfromFauq, Nadia, Anonymous, Mat, Gene_S
  • I recently had my 2nd melanoma removed. The first was in 2009 on my left shoulder, the 2nd on my lower left leg.  After wide exsision, SLN & margins were clear. My official diagnosis statis is "Stage 1b" (T2a NO MO)

    My November LDH level was 219 with the standard range of 125 - 250 U/L. Since this is on the high side of the range, I am a little concerned.  I have not had any CT/MRI or PET scans done to date.

    Does anyone else have any insight on LDH levels??

Tricia Chappell - Chesapeake, VA

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CasieLV's picture
Replies 4
Last reply 1/19/2014 - 4:01pm

I am a stage 3 melanoma survivor and started my own small business. We sell melanoma t-shirts and give eight dollars of each shirt sold to current cancer fighters in need. We are small, and usually give out anywhere from $100-$200 per person to use on expenses not covered by insurance. Fill out our submission form at wear-awareness.com

 

Thanks and keep fighting!

 

Casie

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FayFighter's picture
Replies 5
Last reply 1/20/2014 - 1:51am

Hi Everyone!  First thank you all for being on this site. It has been so helpful since my husband was diagnosed with stage 3C in early August.  My husband finished his fourth round of Yervoy (3mg/kg) on Dec. 20th. Soon after he started having colon issues.  They have him on prednisone to help but I am interested in knowing if anyone has been able to modify their diet to also help with the symptoms. Any and all advice is welcomed.  And again thank you.

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meldad's picture
Replies 7
Last reply 1/22/2014 - 11:14pm
Replies by: HelenQLD, POW, meldad, aldakota22

Hi everyone,

I don't post much but read everyday.

My dad was diagnosed stage 3 in Feb2011  had surgery and 4 weeks radiation. Everything was good until March2012 when scans showed it had spread to lungs. He was on Zel for a good 10months with amazing results but became resistant in May2013. 

Recently, he's just finished ipi at the start of Decemeber and first scan showed 80% reduction/tumors gone but 20% had continued to grow. We just got more scans back this week and it shows continued spread. The Doctors here have said he's only got a few months left!? I feel like they're just giving up, he hasn't tried anything else other than Zel and ipi. Does anyone know anything else he might be able to get into or try here in Australia? I'm desperate! 

Good luck to you all.

x

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BrianP's picture
Replies 3
Last reply 1/15/2014 - 4:46pm
Replies by: Anonymous, JerryfromFauq, arthurjedi007

This is a video from Jun 13 that I stumbled upon tonight.  I hadn't seen it posted on here before and thought it was a pretty good overview of immunotherapy by Dr. Wolchok.

http://www.youtube.com/watch?v=o89zA1TDBJA

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JoshF's picture
Replies 10
Last reply 1/15/2014 - 10:55pm

Finished yervoy Dec 9... Scan on December 20th showed no progression and doc said she wouldn't even be concerned about lung nodule as it was a shadow and the obvious prior knowledge of tumor. Felt it was very encouraging news. So had a nice Christmas break with kids and went into hospital Jan 6 to start HD IL-2. Did 11 bags... Couldn't get last one in Friday...couldn't get urine output. 

Anyway, feeling a bit better but wow feel like I've been run over by train. 27lbs of fluid retention... Scary. My dad took pic on day 1 and last day...wow. Hardest thing is not being able to sleep well. If I could I think I'd feel 1000% better. Cold feet, get chills... General flu like feeling. Not looking forward to next week in terms if dealing with side effects but looking forward to getting on with it. I wish complete response rate was better for patients.... This drug is high price to pay.

 

Josh

Let's work for better treatments....for a cure!!!!

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LKN Captain's picture
Replies 5
Last reply 1/15/2014 - 2:17pm

Just diagnosed Friday, melanoma in situ in my right shoulder. Shave biopsy.

A little background; I'm 28 years old, sum worshipper all my life. I spend summer on my boat or riding my jet ski. Never was a fan of sunblock despite my wife always nagging at me about it. Last summer she noticed a few spots on my back and one on my shoulder that she didn't like. As a typical walking specimen of testosterone, I declined to see a Dr. I've always put up a huge fight about going because I just don't like to see a doctor and be told what to do. The company I work for demanded that we all get routine physicals if we want them to post for our insurance. My wife finally had the leverage to get me to go and show them the coupe of moles.

The doc examined the moles and said, These over here look completely normal, this one on your shoulder is very small, but I do not like it." It was smaller than a quarter of an inch.

He took a shave biopsy (which I am now reading isn't the greatest) and confirmed it is in fact melanoma. He gave me the results a day and a half after the biopsy on his day off. We really appreciate that. He referred me to someone down the hall that has 23 years experience in working with this and is a dermatologist/dermotopathologist or whatever, whom will be doing a wide local excision in two days from today.

His original diagnosis was in situ stage 0. He added that it was caught early and this will not kill me, just leave a scar and so fourth.

Coming to find out staging is very difficult if a shave biopsy is done and I'm wondering why they would specify if it is unknown.. Probably to keep me sane until the procedure is done? I nearly lost consciousness having the biopsy because I looked at what he was doing. I've never passed out sober before, I just became very confused and couldn't hear him talking to me, then the nurse ran in and the lights went dim.

Any questions I should ask on Wednesday when I get my shoulder whittled on?

Thanks in advance.

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Anonymous's picture
Anonymous
Replies 12
Last reply 1/19/2014 - 11:27am

I've poked around using the MPIP "search" function.  I'm not finding many ipi success stories (other than Jerry from Cape Cod).  Maybe a question for the old timers, but can you recall situations where the patients have had the standard FDA-approved course of ipi (4 infusions) and got great results?  Maybe all of those folks have left their melanoma lives behind and no longer post here?

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Anonymous's picture
Anonymous
Replies 4
Last reply 1/15/2014 - 2:20pm

I recently had my 2nd melanoma removed.  The first was in 2009 on my left shoulder, the 2nd on my lower left leg.  After wide exsision, SLN & margins were clear.  My official diagnosis statis is "Stage 1B (T2a NO MO) 

I wanted to find out what the standard protocol is for both imaging tests (PET, etc.) as well as treatment protocols others are using. 

I fully appreciate that, at this point, I am considered early stage...and I am profoundly thankful for that.  But given that I have now had "2" primaries, I would sleep better if I were given a PET scan or something to put my mind at ease!

Thoughts....experiences???

Tricia Chappell - Chesapeake, VA

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