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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Charlie S's picture
Replies 7
Last reply 1/15/2014 - 6:59pm

Yeah, yeah, I know I am a pain in the butt.......................but; after many years here and with the latest "re-launch" of this website, , it is quite apparent that there are major security flaws, so be carefull.

Today, I received six e-mails,all of which came from "tor" sites via MRF.

For those unfamiliar with  a "tor" browser , the object is to disguise and misdirect.

Given the makeup of the new MRF Board,  it is dissapointing this would happen.

Whats up Tim?

If you like, I have a packet capture of the trail if you like.

Regardless, this site has been compromised and I do not like it.

Charlie S

 

 

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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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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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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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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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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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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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jmccay's picture
Replies 4
Last reply 1/15/2014 - 7:36am
Replies by: POW, jmccay, Janner

Hi Team,

My mother is meeting with Docs next week (Jan 17) with the option to start ipi / Yervoy.

She had her eye out last Feb 2013 but the melanoma has spread to long bones and liver too.  She is 73 so this treatment is the only option.

We would love to hear from anyone - especially OM - with ipi experiences.

Much Appreciated & Best of Luck!
James

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Julie in SoCal's picture
Replies 5
Last reply 1/14/2014 - 7:24am

Hi there Friends!

I'll be starting ippi this coming Wed (15 Jan).  I will be listening to my Dr and communicating well with them, have you all learned any tips or tricks for getting through this?  What is the general knowledge?  Advice? 

Thanks!

Julie

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017)

Stage 3a 2017 NSCLunc Cancer VATs; Carboplatin & Pemextred;  radiation

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Golda_'s picture
Replies 2
Last reply 1/14/2014 - 2:43am
Replies by: Golda_, GAngel
Hello all!
Friends , we need your advice.
As I said , we are self-treatment my Mom. In our city treated melanoma still with chemotherapy.
Mom started taking Zelboraf with November 2013 . Had a lot of side effects. After 5 weeks of treatment ( 8 tablets , then 6 , then 4 ) mom took a break of 12 days. It seemed to her that the tumor began to grow. Then again began to accept : a few days 8 tablets , 6 ... 4 ... After 18 days of receiving again took a break ...
Swollen hands . Under the skin on the palms have air bubbles as the after burn . Mom does not go out into the street. Fell eyebrows and hair began to fall .
I read a lot about taking Zelborafa with pauses . 4 weeks + 2 week break . 4 weeks &4 weeks .
Does anyone have experience of receiving it Zelborafa with pauses ? Share your story !
Can 8 tablets is too much weight to 62 kg = 137 lbs?
Reading the forum , there was one more question: When you receive combo drugs are taken without pause?
Who first took Zelboraf and then Combo - why you switched to a combo ?
 
Thank you!

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Anonymous's picture
Anonymous
Replies 5
Last reply 1/13/2014 - 7:24pm
Replies by: Richard_K, POW, Anonymous

Again getting the spam filter blocker message, like last week.  Have a full text article only available today and tomorrow on braf inhibitors.  Looks to be very important.  So, please fix that spam blocker.

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Anonymous's picture
Replies 3
Last reply 1/13/2014 - 2:51pm
Replies by: POW, Anonymous

This is only available for two days, free full text.  I tried to save in pdf, won't work.  Saved to text file messes up the chart.  So, after two days, I can provide the text if the spam filter does not block it again.  Sorry, very frustrating.

It looks like it is very good info.

http://www.croh-online.com/article/S1040-8428%2813%2900263-1/fulltext

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hdelancey23's picture
Replies 23
Last reply 1/13/2014 - 2:44pm

January 6 2014 at 5:22 am my mom was called home to be an angel. She fought long and hard even in her last days. And now she is finally at peace. I am mad at her doctor because he went to the hospital two weeks earlier because she had a lot of pain in her back. She knew something was wrong and the doctor only did an x ray and said there was nothing there. It was probably just a pulled muscle. Well when she was admitted to the hospital for the last time they did a more invasive ct scan which hey should have done in the first place and found there was a tumor growing into her spine and bone. Thats what was causing so much pain. Would it have made a difference to do radiation on that tumor? I don't know the cancer was taking over by that point. It was in all of her organs and everywhere. In her last days she still wanted to know; what's next? What do we do now. At that point there really was no more options. She decided she wanted to donate her boy to science so even after her death she is wanting to fight this horrible stupid cancer. I pray that they can find out as much as possible from her body and maybe find a cure from her.

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Swanee's picture
Replies 32
Last reply 1/13/2014 - 11:28am

Please join me in an old fashion bell ringing for our friend Denise, who lost her battle with melanoma cancer on January 6th.  

I joined this site 4 years ago and experienced this bell ringing whenever a member whom everyone knew, lost their battle with melanoma.  I don't know where, when or who started it, and I would love to know.  For all who regularly read and post, I think it's a nice way to honor our Friend and send her to the heavens with our bells of solidarity and our quest to keep fighting and find a cure to melanoma cancer..

So in honor of our Friend, Denise Kirley, please ring your bell in honor of her memory.

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Janet Lee's picture
Replies 5
Last reply 1/13/2014 - 11:19am

I've seen a couple of posts recently about left-over melanoma drugs, as well as cautionary replies about scams, confidentiality, etc. I think this is a very valid topic, and would like to know if there are any "legitimate" ways to donate any of these expensive drugs to the melanoma patients who may be without insurance or are being denied the medicine for whatever reason.

Seems to me there should or could be some sort of clearing house to help others?

Janet Lee

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