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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NYKaren's picture
Replies 7
Last reply 9/1/2011 - 9:29pm

Hi, I have an appointment w/Dr. Sznol @ Yale/New Haven tomorrow.  There is a possibility that I will be starting IL-2 on Monday.  I am extremely nervous!

I have read Jane's list of things to bring.  So, 2 cases of water is 48 bottles--divided by 5 days is 9+ bottles a day.  Is it really advised to drink 9 bottles of water a day?

any feedback much appreciated.  thanks,


Don't Stop Believing

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JerryfromFauq's picture
Replies 3
Last reply 9/1/2011 - 9:02pm
Replies by: JuleFL, jimjoeb, eaca


Real-Time Monitoring of Melanoma Markers Predicts Relapse
Elsevier Global Medical News. 2011 Jul 14, B Jancin

SEOUL, SOUTH KOREA (EGMN) - Serial monitoring of melanoma tumor marker levels in peripheral blood using a novel quantitative real-time reverse-transcriptase polymerase chain reaction method after surgical resection of melanoma has shown promise for the early detection of patients at high risk for disease progression.

The real-time polymerase chain reaction (PCR) assay measures circulating levels of five markers unique to melanoma cells: glycoprotein 100 (gp100), melanoma antigen gene-3 (MAGE-3), tyrosinase, melanoma marker A (Melan-A), and melanoma inhibitory activity (MIA) protein, Dr. Spyridon Gkalpakiotis explained at the World Congress of Dermatology.

He reported on 65 patients who underwent peripheral blood testing and analysis of the five markers every 3 months for the first 2 years after resection of their stage II or III melanoma, for a total of 2,925 PCR assays.

Twenty-six patients experienced elevated test results. All 26 relapsed during 5 years of follow-up; the 5-year survival rate in this group was 65%.

In contrast, only 1 of 39 patients with consistently negative real-time PCR assays experienced disease progression; 5-year survival in PCR-negative patients was 97%, reported Dr. Gkalpakiotis of Charles University in Prague.

MAGE-3 was expressed in 21 patients with disease progression. The next most sensitive markers of melanoma progression were MIA and gp100.

Dr. Gkalpakiotis declared having no financial conflicts.

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

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rjcravens's picture
Replies 6
Last reply 9/1/2011 - 8:52pm

So, i started Interferon in May, sub q in june. Two weeks ago i started to feel like someone sucked the life out of me. I missed a couple days of work. Weak, nauseated, headache and sooo tired. I ended up passing out in the bathroom, giiving myself a black out. Went to doc. He said take a break, stop tretment for a week and restart at lower dose. He said my liver functions were up, lost ten percent of body weight, blood counts were low. Hbg and wbc. So i went from 12 units to restarting at 6 units. My queation is, is it still even effective?? He said if i had the same effects then we would have to quit. I dont want that. I want to know i did everything to prevent it from coming back. Any thought??

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rjcravens's picture
Replies 3
Last reply 9/1/2011 - 8:39pm

Please see my blog. i just started it and am looking for some advice from fellow melanoma warriors & family. Thank you.

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rjcravens's picture
Replies 4
Last reply 9/1/2011 - 8:36pm

My name is Rachel and I am 35 yrs old. I have been married for 13 yrs to a wonderful man named Jerry. We have three blessings...Megan 13, Dawson 12, and Amy 10. I am starting a blog in attempt to keep my sanity and hopefully find answers to some questions and meet others and hear their stories. Jan 2010 I had a smal "pimple" come up on my left upper arm. It wlas the same color as my skin and of no concern to me. My husband kept saying "that thing has been there a while, i think you should have it looked at." Being a nurse, I put it off and figured it will go away. It did not. First part of Feb I went to family doc. He had me use some cream for a couple weeks then took it off and stated it was prob a granulation, no worries. A couple week later i get the call its Melanoma. So i went to surgery had wide excision they traced the lymph node and removed it. PET scan and MRI negative. It came back with no spreading to the lymph nodes but was 4cm.
It was discussed to do nothing or start Interferon. I started the treatment in May IV, then started sub Q in June. It has not been nice to me. As of Monday, I will be reducing the dose in almost half. Here are some of my questions: 1. Did anyone think the Interferon gets easier after a certain point? 2. I am taking cymbalta in the mornings, as well as Ritalin. I take ativan and zofran on days of injections. Is there anything else i should take? And does anyone else have experience with Ritalin for fatigue? 3. When is this feeling of living in fear each day going to pass? I am eager to hear

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Anonymous's picture
Replies 7
Last reply 9/1/2011 - 6:33pm
Replies by: NYKaren, JerryfromFauq, washoegal, Dynasysman, Anonymous



I am stage 3c unresectable.

I am concerned that if my doctor prescribes Yervoy for me, my insurance company, Blue Shield Of CA. will not approve it??

Has the FDA approved Yervoy for stage 3C unresectable??? Anyone get approval from their insurance co. for Yervoy that are Stage 3C.

Thank you so much for taking the time to post a reply.


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Jewel's picture
Replies 4
Last reply 9/1/2011 - 3:59pm

Hi Charlie S,

Weather you know it or not you have been an amazing influence on myself and many people on this board. I have only written a few times Since my husband was diagnosed in 2010.

Last week you wrote about feeling "spooked" something that not only made you seem human but more real for the rest of us. You have had melanoma in your life for a LONG time (something that gives the rest of us hope....yeah right lucky you)

Please let us know how you made out because I know you have MANY friends on this board who would like to know.

I for one would like to Thank You for your  No Bull**** advice. Keeping it real is what it is all about. Hope to be shooting the Shit with you for many years to come!!!!




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deardad's picture
Replies 4
Last reply 9/1/2011 - 2:06pm

Hi everyone just wondering what has worked for liver and spleen mets? Blood work all ok so the tumor burden is low, but he (my dad) just had a craniotomy for a single brain met. Anyone doing well and was in the same boat?

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jmmm's picture
Replies 2
Last reply 9/1/2011 - 1:53pm
Replies by: nicoli, FormerCaregiver

My husband is stage IV--he completed yervoy in July--it worked for a few weeks, but a follw up scan last week showed the cancer is growing.  His doctor mentioned there was a combination BRAF/MEK trail, but he wasn't doing one.  My husband is BRAF positive.  A few questions--is there a marker for MEK, or what would you need to qualify for that type of study.  Where are the BRAF/MEK studies taking place and is there any information about how well it works.


Thank you.

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Terra's picture
Replies 6
Last reply 9/1/2011 - 8:54am

Just wondering if anyone can weigh in on experiences and suggestions - ipi does not seem to be working and we are trying to make a decision between these three treatments.  Time is of the essence as Derek has innumerable mets in both lobes of liver and has had them since last July (2010) although his liver functions are still fine, he also has a tumour behind left eye and increasing soft tissue encasing right aorta, right main pulmonary, and bronchus.


Chemo does not make since - on off chance ipi is late responder do not want to kill immune

IL2 - stimulate immune, low chance of response, away from home

TIL - stimulates immune, away from home a shorter time, long time to see if it works


Does this make sense?


Thank-you in advance


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Mickster's picture
Replies 0

Hi- All,

This is my first post on this website as i have only just joined. I was diagnosed with Stage 3 Melanoma In January 2010. Since then i have had numerous PET and CAT scans which thankfully show NED. However i still have a problem getting paranoid about every little thing that i feel or see on myself. Do any of you feel this and how do you treat or work with it.


Thank You


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This article answers some of the questions about what multidrug (especially of unapproved drugs) faae i get tested as combinations.  This is just a brief statement from the article.

Though increasingly sophisticated research is making the selection and targeting of the right steps in a disease pathway more likely, how best to conduct clinical efficacy trials of combination therapies remains somewhat unsettled, Friedman adds. “The biggest worry is how to prove that the single agents are not providing sufficient benefit,” she says. While preclinical work may suggest that a combo therapy is the best way to go, testing the drugs in tandem makes it difficult to parse the effectiveness of each compound individually. And because demonstrating that the combo is better than either component on its own is one of the FDA guidelines, Friedman continues, Phase II studies may require multiple arms that test each agent in isolation as well as in combination.

Furthermore, the FDA guidelines are just that. The agency currently has no established approval protocol for novel combination therapies, making the undertaking risky and potentially expensive. That, according to Troy Wilson, president and CEO of the California–based biotech Intellikine, is why Big Pharma is first to launch into the novel-combination-therapy arena. Larger pharmaceutical companies are better positioned to take on the initial risk because they can spread costs across their large portfolios, he says. However, thanks to biotechs’ ability to efficiently pull together specialized research teams, there could also be opportunities for such firms to conduct smaller-scale preclinical and early-phase studies, Wilson adds.

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

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lizard's picture
Replies 9
Last reply 9/1/2011 - 12:24am

Hi. I'm new to all of this and I have a few questions maybe you folks can help with. Been scanning this forum, but not seeing the info I'm looking for.

My wife is recently diagnosed with Stage3A. She had a positive mole removed in early June. The follow up sentinal lymph node (3 nodes sampled) came up positive for microscopic growth. She then had all 31 nodes removed from that armpit - all were negative and the PET was too.

We are looking at starting interferon next week. She will be getting the low dose regime from the start - no high dose IV - or at least that's how I understand it. Meeting with the oncology team this week and I'll get that clarified.

Problem is that my work takes me out of town a bit and I don't want to leave her to deal with side effects and kids etc on her own, especially at the start of the treatment, and I'm supposed to go out for a few days next week. I can't tell if I can safely leave the house to get groceries let alone leave town for 3 days.

Reading these forum postings, it looks like pretty much everybody taking the stuff feels worse than terrible. Can anybody say how soon she will start to feel it? Does it hit you after the first one, or does it take a few to build up? Can I be away at all during this beginning period or do we need to plan on her being incapacitated? Will it hit her immediately or does it kind of creep up? How long should we expect it to last after the first dose - hours or days?


Any advice is welcome, thanks

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Terra's picture
Replies 6
Last reply 8/31/2011 - 11:26pm

Derek had scans 3 weeks after his last ipi injection and scans show progression in his thorax (no measurements) and right lung (no measurements) and progression in his liver (1.7 to 3.3. and 1.2 to 1.5) and a new tumour behind his eye. 


We really want to believe that ipi just hasn't started working yet but our oncologist does not want to wait.  He would like to radiate his lung, thorax area, and eye - 5x, and do chemo - 2x (carbotaxol) for his liver - to attempt to get things under control.


My question is that if ipi stimulates the immune system and chemo kills it will that not wreck anything that ipi might still be trying to do and how do you tell between inflammation and continued growth - I really need some help, please...should I be asking for measurements and going back and calcualting the rate of growth or progression before and after ipi or go with chemo and hope it doesn't undo any possibility that ipi could still be working?


Thank you in advance


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EricNJill's picture
Replies 60
Last reply 8/31/2011 - 10:06pm

At 12:12 a.m. Eric is now an angel in heaven.  My heart is broken.  Now that Eric is finally at peace, my battle is just beginning.  Please pray for God to give me strength.  Eric is my hero, my soulmate and now my angel.  I love you forever, Eric.

JillNEric in OH

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