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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naty's picture
Replies 3
Last reply 11/23/2010 - 10:07pm
Replies by: naty, Jackie W

I'm just wondering how do you fight insurance to get to major cancer centers such as MD Anderson?  We live in michigan, my father has medicare thru an insurance company here.  And FINALLY after 3 weeks of daily calls to the insurance, his oncologist, and MDA we have a signed contract JUST for a 1 day consult.  Is this typical to have to fight so HARD against the insurance companies?  I was told originally by MDA that we would be there for 3-5 days for a consult, but now we will be there for a day.

Sorry I'm trying to learn the ropes and we are new to this "game".  Any information and tips would be helpful!!   dad has stage IV (brain, liver, lung) and just finished brain radiation last monday.  

So I guess my questions are 

1.  How to deal with insurance (or is it medicare that is a problem?) or is there an insurance that you may have that was ok with MDA


2.  While at MDA for the consult will they discuss all his possible options in regards to clinical trials he qualifies for or do we need to know what he may qualify for (via ?

3.   I may be adding more! thanks



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churchwelldana's picture
Replies 4
Last reply 11/26/2010 - 9:52am

I'm currently stage 3a, about to have surgery to remove lymph nodes. After that I will start Interferon. I live in Memphis and there are no clinical trials available here. There is one available at Vanderbilt in Nashville (4 hour drive). It involves using ipilimumab, but it is a double blind study. I'm just wondering if that would even be worth my time. I know most all of this is a wait and see kind of thing, but I'm only 32 and would like to do whatever I can to reduce my chances of it coming back. The good thing is that my PET/CT scans were clear and that I only had one sentinel node with a micrometastases.

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alicia's picture
Replies 7
Last reply 12/5/2010 - 12:20pm
Replies by: Amy Busby, Lori C, JJO, Carmon in NM, Jydnew, jag, Anonymous

I've recently been experiencing headaches that cuase extreme nausea. Sounds like migraines to me but I've never had this problem and I'm wondering if this is something I should call my dr about. I'm not due to see her until April 2011. I'm just concerned about brain mets And i haven't had an MRI of the brain since I was initially diagnosed in sep 2006. Did any of you with brain mets have symptoms before they were found. My once only does ct scans of my chest once a year and I worry something could be missed elsewhere in my body. Thanks any input would be helpful.

Alicia B age 28 with 2 kids
Stage 3 melanoma 2006
2nd primary stage1 Mel 2010

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lalbers's picture
Replies 6
Last reply 11/24/2010 - 12:13am
Replies by: Cynthia C, lalbers, JuleFL, jag, Fen

I'm new here to this forum, and hopefully can have someone to lean on.  Dad had skin melanoma 5 years ago- had surgery, clean margins, sentinal lymph node biopsies- everything clean.  Pet/MRI/ oncologist every year.  A few months ago, dad developed respiratory problems, diagnosed with seasonal allergies.  Wrong.  Chest x-ray showed several large tumors by his heart and lungs.  Biopsy confirmed.  It's back.  He lives several states away.  They want to sell their house and move closer to me and hubs, but with the market the way it is, they can't sell, and can't move down here till it sells.  I'm a nurse, and know his prognosis, even though he tries to shield me and my brother from it- ie, they won't get copies of diagnostics, and read them to us, even though I know they have them- they say they don't.  They've already sold off some valuables they had so that mom can have enough money to move- but money really isn't an issue- she can live with us.  The thing that's killing me, is that as a nurse, I'm flexible in working, I've already told my work I may have to leave, and that's ok- I can get a travel position up there, and spend time with them- a few months, a few weeks....... Dad refuses to let me and my brother come up.  He says he wants to die there with mom, and we can come up after he's dead.  We've never been really close, although they did spend a summer, and several vacations with us in the last few years- and I talk to mom almost every day.  He's only opting for Temozolomide, even though he is eligible for severala clinical trials- but mom would have to drive him to them, and she can't drive that much.  I offered to come up there and drive them, and was turned down.  I hate this feeling so helpless.......

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BarbieGirl's picture
Replies 5
Last reply 11/23/2010 - 11:23am
Replies by: DonW, bcl, jag, King, lhaley

I'm pretty sure he said 2001 was the last time he was NED!!  Yay Allen!!  He can't get registered here for some reason so he can post.

Please keep those good thoughts and prayers directed to Allen and his wife, who's currently doing therapy for her back.


Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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EricNJill's picture
Replies 17
Last reply 11/28/2010 - 10:09pm

We called in Hospice to get help with Eric.  They said that they would care for him during the 2 month waiting period before Eric can get into a Clinical Trial for having Brain Mets.  He had a Craniotomy and he's having Gamma Knife on 11/29.  They have been a huge help already, but our problem is...

Eric's Oncologist said that no clinical trial will accept Eric if he has been under Hospice Care.  Hospice said they would step out and come back in when needed but the Oncologist is afraid that the clinical trials won't take him.  How would they even know?

I'd like to keep Hospice because it's a huge help.

JillNEric in OH

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LynnLuc's picture
Replies 6
Last reply 11/29/2010 - 11:09pm

I am stage 4 NED...I was told I would always be considered stage 4 and would not regress to lesser that true- even though I have no disease at this point? I was told it's the distance it travels and not how "bad" you are...Just wondering...anyone know?? 

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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dian in spokane's picture
Replies 4
Last reply 11/25/2010 - 12:08pm

Hey Kevin,

If you are reading..we'd love an update. I am sure I am not the only one wondering how things are going with you.



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FertilityDoc's picture
Replies 13
Last reply 11/24/2010 - 8:57pm

I was diagnosed with Stage IIIb Melanoma in 04/09.  Made it through the year of Interferon ending in 07/10.  Had a negative PET scan in June.  Was scheduled for a repeat CT scan on December 6th.  I had really put the Melanoma behind me.  As we all know, you continue to live with the fear.  Over the past week I have had vague right upper quadrant discomfort about 1 inch below the rib cage.   Not bad.  Just a vague sensation which seems to worsen after eating.   Could be gall bladder disease or gastritis (had H. Pylorie in the past).  Can't get fear out of my mind.  Based on my fears and for the sake of being careful I moved up my CT scan to this coming Wednesday.  I am just curious.  For those who have had liver mets, did you have any early symptoms?   Could you sense something wrong early?  Any vague bloated feeling or discomfort?

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CaptAaron's picture
Replies 2
Last reply 11/22/2010 - 1:14pm
Replies by: dian in spokane, Anonymous

Good day fellow warriors!  Well I want to reitterate that I'm overwhelmed at the responses I got to my first post.  Everyone had wonderful inputs and I trully appreciate that.  It just sounds like the entire decision is too ambiguous to make it easy on anyone, and the limited evidence supporting Interferon treatment creates another dynamic to our scenario that is also not desirable.  With the misery that ensued last Monday evening, I was at least ready for it on Wed evening when I gave myself the second injection.  Surprisingly, it wasn't bad at all.  I was a little tired, and a little spacey, but definitely nothing like the first night.  I thought this was a good sign.  My third shot came on Friday evening and again, nothing notable about the experience.  This is good.  As long as my Wed and Fri evening experiences continue, I'll be good to go.

I still think there's justification for my questioning the staging methodology for melanoma and how it can be better refined to account for the individual afflicted by this disease and not just the statistics.  However, that's not my expertise, and I'm sure there are thousands of doctors and subject mattter experts more qualified than I making those determinations.

Stay strong warriors!

2010 Stage IIIC - Lymph node dissection; Interferon 2011 Stage IV lung mets; Yervoy 3/4 only; surgery & BRAF next Through faith & prayer we will be provided with peace & healing.

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Sherron's picture
Replies 16
Last reply 11/24/2010 - 9:20pm

It has been a roller coaster lately.  Jim as some of you know has been in and out of VA ER for several weeks.  They did emergency surgery on Friday around noon.(he had only about 36 hrs left)  No time even for scans...they could see the hole.  They did a resection.  They were hoping to do further work but he was very unstable during the surgery,  His stomach was filled with blood and bile.  There are still 12 to 13 tumors which will most likely do the same thing.  They were hoping to remove more and give him a bag....but at this point that does not look likely;  His stomach is open with gauze over it.  It has to heal from the inside out...He will be here for 7 to 20 days...then they will send Home Health Care out to chnage and clean the area.  The doctor will set him up on some good medications for pain and break thru pain.  And we will try to give him the best QUALITY AND PAIN FREE TIME LEFT FOR HIM.  Jim had 4 years 2 months of great quality time, which is what he wanted, ..I don't think the doctor has told him about the other tumors, nor have I since he has been in ICU....but I think he probably know there are more.  We pray and ask for your prayers for a pain free holiday season, seeing many family members, making some few final joyous memories...

I will keep everyone one informed on things as it happens.  Thank you for being here for me.

Take Care,

Sherron, wife to Jim

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Joan C's picture
Replies 5
Last reply 11/22/2010 - 6:27pm

I just saw this on  Has anyone else heard any more about it?  It doesn't read like much more than a press release, I'll try to search more on the internet.

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Replies by: Rebecca and Bob, Sherron, Pekoe, King, Anonymous, Fen

We have had a good 16 month break from anything going on. The scans in mid October were clear but Bob has been having a burning sensation and stomach pains cramps again. When I called the doctor last week they said they would have seen something on the CTSCAN causing symptoms, but I've heard to many times that people with Intestinal mets that they go undetected..  Anyone who has had intestinal mets please feel free to add your thoughts.  I'm just praying it's anything else. I never thought I would pray so hard for the flu or a stomach virus. Anyway, he is trying to get a scope scheduled or a PET. I know he's worried when he is actually calling the doctor himself.

Looking for positive thoughts and prayers. I have been  thinking and praying that we were done with our turn with this disease. I thought maybe it was done after the IL-2 and surgery.



Thanks for listening.




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Jim was released from the VA Hospital after his blood transfusions but had to return for emergency surgery on Thursday. He had a tear in his colon and that part was removed and resected. He is now in ICU and wlll  be until at least Tuesday. The doctors say he may  be in the hospital for 3 weeks.  Please continue to keep them in your prayers during this difficult time.

Thanks again for your care, concern, and support for this family.


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JohnHen's picture
Replies 17
Last reply 12/2/2010 - 5:28pm


I am a new member of this exclusive club and I am searching for some thoughts on a few questions. On Tuesday, November 16, I had a sentinel lymph node mapping and a wide excision on my back left shoulder for an ulcerated tumor that was first noticed mid August as a tiny bump,and initially removed about 4 weeks ago. The pathology after surgery came back as: 

Breslow thickness: 7 mm; Clark level: 5; mitoses: 15/mm2; ulserated

13 lymph nodes were removed with two positive for macroscopic cell growth both inside and outside of the two nodes

Clear margins were achieved except for the bottom where only 1mm clear tissue could be achieved before hitting muscle

Presently, I have no symptoms or indications of any other tumors.

I have been doing a lot of reading so I have a pretty good idea of where I stand statistically. My questions today are:

1. How long should I wait after surgery for the PET scan in order to avoid false positives?

2. Living in Southern California, what would be the best center(s) for melanoma treatment? As of Jan 1, I will have a PPO that includes City of Hope, Ronald Reagan UCLA Medical Center, UCSF Medical Center, and I believe Univ. of Stanford Medical Center. Possible others but I have seen these rated high as overall cancer centers. My current HMO will allow a second opinion after my PET scan so I should be able to at least pick the center to get started.

3. Depending on which stage i am at after PET scan, can you suggest the most beneficial treatment to pursue. I am open to clinical studies.

Heck of a way to begin our retirement as of July 1, but we will do all that we can do and hope that I can survive until a true cure becomes available. I appreciate your thoughts in advance.

John, 58, healthy and hopeful!

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