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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Speedster's picture
Replies 2
Last reply 3/27/2015 - 9:57am
Replies by: Aundrea

Have an ideas for support here in Austin as I'm just getting strarted having be diagnosed in January.  I am tying to naviagte the emotional side of things as I make the turn toward a clinical trial in Dallas at Baylor Sammons.  I'm Stage IIIc.  Ugh.

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Replies by: JP.2000, _Paul_

Journey DX, a patient research company, is working with patient advocacy group Canadian Skin Patient Alliance (CSPA) on research to understand the potential impact of pembrolizumab on the patient experience.

The research will be used as part of the CSPA patient input submission, to advocate for provincial coverage of pembrolizumab in Canada, so that patients may have access to this drug without paying for it out-of-pocket.

We are conducting telephone interviews (30-45 minutes) with:

1) Individuals from Canada or the US who have been in a pembrolizumab trial

2) caregivers for individuals who have been in a pembrolizumab trial

Absolutely no names or identifying information will be reported.

A compensation of $50 will be provided to those who participate, in appreciation of their time.

If you would like to be involved or would simply like more information, please contact Dr. Jennifer Pereira, Research Director of Journey DX (jennifer.pereira@journeydx.com, 416-485-7387).

Thank you very much for your consideration.

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Anonymous's picture
Anonymous
Replies 2
Last reply 3/26/2015 - 3:05pm
Replies by: Anonymous, Janner

Has anyone ever heard of this test?   Thoughts?  I'm currently 1b dx june 2014, although I try hard to put it out of my mind and know that my chances of never dealing with melanoma again are excellent.  It' lurks in the back of my mind, what if??   

 

http://skinmelanoma.com/know-your-risk/know-your-metastic-risk/

 

Know Your Metastatic Risk
An accurate prognosis can have significant impact on post-operative care

 

About 60,000 people are diagnosed each year with early stage, non-metastatic melanoma. Some of them will go on to develop aggressive metastatic disease. In fact, according to the American Cancer Society, 3% of Stage IA, and 9% of IB tumors will turn deadly within 5 years. In addition, 19% of Stage IIA, 30% of IIB, and 47% of IIC melanomas will likely prove fatal over a 5-year period.

The DecisionDx-Melanoma™ test is designed to identify the Stage I and II patients whose tumor biology suggests they are at higher or lower risk of metastasis than their stage might indicate. The test uses sophisticated technology to measure the “expression” or activity of specific genes known to play a role in metastasis, and classifies tumors as either Class 1, with a 3% chance of spreading within 5 years, or Class 2, with a 69% risk of metastasis.

Gene testing is an advance made possible by breakthroughs in genomic, or personalized, medicine. While staging categories (I-IV) are based on the outcomes of large groups of patients whose cancer shared similar characteristics (tumor thickness, mitotic rate, ulceration, presence in the lymph nodes, etc.), gene testing analyzes an individual’s own tumor tissue to estimate their metastatic risk. This “individualized” information, in combination with staging, can help doctors and early stage patients better determine how aggressively to monitor, and in some cases, treat their disease.

It’s important to talk to you doctor to decide if the gene test is right for you. To guide the discussion, download the “Talk to Your Doctor” guide.

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Replies by: JimsWife, rosa1, Patina, Issy

Hi y'all, I've been browsing this board for a few months and am so thankful it exists. Hoping you guys can weigh in and lift my spirits.
A little background: My husband Jim is 34, Army National Guard veteran - 14 years of service, 2 tours overseas to Afghanistan and Iraq. He was diagnosed on 12/23/14 as stage IV with multiple brain, lungs, and bone mets (in his lower spine, left hip and femur) BRAF and PTEN positive. Primary diagnosis was a mole on his right temple in 2007, that was removed.
He had SRS in January to 11 lesions in his brain, then another MRI revealed there were 20+, so he had whole brain radiation in February. He also took Temodar during this time. After a couple weeks break, he started the braf/mek combo on 3/2. The side effects were mild until recently. He now has a nightly low fever, chills, headache, loss of appetite and fatigue. It seems to be getting worse and I'm so worried. Smoking pot doesn't help the appetite anymore and he just started cannabis oil 5 days ago.
I should add we've only been married 19 months and I'm 25 weeks pregnant with our first child. This has been so hard to deal with but lately I've been having a really hard time, especially now that I can tell he feels so bad. I hate this disease so much and what it's doing to him and our life. Any positivity would be appreciated :)

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Julie in SoCal's picture
Replies 9
Last reply 3/27/2015 - 10:51pm

Hi there friends!

 

Yes we need some good news!  After seemingly forever (ok, only 3 weeks!) I now have a new date to start treatment. It's taken a lot of wrangling between Rock Star Doc's office, my insurance company and Merck, but I've finally gotten a date to begin Pembro!  I start on Monday afternoon.  Also, because of all the insurance denials and foot dragging (and the fact that I don't make a lot of money), Merck has accepted me into their access program and I'll get it free for a year.  AMAZING!!!!

 

So grateful!

Julie

Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, IPI, PEMBRO.

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tony9511's picture
Replies 7
Last reply 3/27/2015 - 2:20pm

Hi I am one of the victims of this terrible disease.  I was diangonosed with Melanoma, hade local WLE Surgery, and less than a year later it came back and spread to the lymph nodes in my neck.  I know my survival rate is not good, especially with it coming back so soon.  I did the interferon for one year and it was pure hell on me.  A few months past my last injection of interferon, my body hurts just as bad in fact worse than my year on melanoma.  I have major pain in my bones and my joints.  My question is does anybody know or experienced this?  Thank you so much I anxiously await responses.  I am a 41 year old male.  Also does having it come back so quickly affect my survival rate?   Tony

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Ken Burns has a documentary film based on the book “Cancer, The Emperor of All Maladies”

http://cancerfilms.org/

It will be on PBS March 30, 31 and April 1 at 8:00 pm (CT).

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dmk252003's picture
Replies 5
Last reply 3/26/2015 - 6:06am

Sadly my mom past away on the 16th.

We are not sure if she passed away from misuse of Fentanyl patch or heart problems. We chose not to do an autopsy.

Please, if anyone here is using Fentanyl patch for pain, use with care.

May God be with all of you

Donna

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Aundrea's picture
Replies 11
Last reply 3/27/2015 - 4:18pm

For those of you who are NED survivors, I would just like to see some statistics.  Make it short and sweet.  My husband is IIIc, resected at the moment and is hopfully getting approved for the ipi/nivo 2 arm blind trial in the next 2 weeks.  We know he will get one or the other.  So I just want a roll call and Im going to print it out for my husband whom has been emotional just to let him see the hope I see daily looking at this forum! 

List: 

Diagnoses date 

Stage 

How long NED 

What treatment used 

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MariaBailey's picture
Replies 6
Last reply 3/25/2015 - 1:14pm
Replies by: arthurjedi007, MariaBailey, mary1233, Anonymous

My Mom was diagnosed in October 2014 with Mucosal Melanoma of the Nasal Cavity. She had surgery to remove the small tumor, half her pallate, part of her cheek bone, half her jaw and her lymph nodes from her neck. Then had radiation 35 treatments. The doctor told her that he believes he got all of it but this is a very sneaky cancer. Well in December her side hurt and she had a x-ray. They found a mass on her bone. With a byopsy they found the mucosal melanoma spread. She does not have any of the protein variations so they have her on Yervoy. Has anyone had this and if so what other treatments are there? I have been doing research but it seems all the treatments that are working very well deal with the variation of the proteins (BRAF, NRAS, and Kit). This is making me nervous and I am trying to find out other treatments to help my mom live a long full life. Thank you

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cheryl913's picture
Replies 9
Last reply 3/26/2015 - 2:10pm
Replies by: Anonymous, cheryl913, Linny, SABKLYN

I had a radical axillay lymph node dissection done after my wide incision that disfigured a tattooed portrait I have of my daughter on my right arm. I have been NED for over a year and no lymphedema. Now I'm wanting to have the tattoo fixed, but I am very nervous that it will cause lymphedema. At the same time I don't want to stay disfigured. Can anyone offer real life experience with this other than" it's not a good idea".

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Cathy.Welch46's picture
Replies 6
Last reply 3/30/2015 - 3:07pm

has anyone else had to experience this and what treatments have you tried.  Do you know someone who had and did not  make it? 

Stage IV for five years now.  Enjoying life to the fullest

Cathy

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AZ_Gal's picture
Replies 2
Last reply 3/24/2015 - 1:55pm
Replies by: Anonymous, ldub

I had my first primary removed august 5th 2013, and have been cancer free ever since. Supposed to have skin checks every 6 months, but I slack on them terribly. They kinda suck and are embarrasing, for me anyway...maybe it was just my dr.
Anyway, even though I slack on seeing the derm, my hubby checks my body for moles regularly.
Two nights ago he said the words I never wanted to hear...you have two new moles (near my original primary less than 6in away) and one looks asymmetrical and is two different colors. My kids are home on spring break for another week, but I'm going to try and get into the dr when they go back to school, but please tell me I'm panicking for no reason and that everything is fine. i know it may not be but I need reassuring words...this time is really bothering me, and has my stomach in knots.

Thanks guys.

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Anonymous's picture
Anonymous
Replies 2
Last reply 3/24/2015 - 1:15pm
Replies by: Kathy himes, dvd

Hi. My wife has started treatment and after one cycle her liver enzymes have shot up. Has anyone gone through this?. Thanks, Doug

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BrianP's picture
Replies 1
Last reply 3/26/2015 - 9:19pm
Replies by: jahendry12

Thought this was kinda interesting and gives some more thoughts on why combo therapies will probably be the future for treatments.

 

http://www.npr.org/blogs/health/2015/03/23/394132747/why-the-war-on-canc...

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