MPIP: Melanoma Patients Information Page

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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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BGL530830's picture
Replies 8
Last reply 8/31/2010 - 9:28pm

Husband had first dose on june 18, so it has been about 10 and a half weeks since then.  A few days ago he started having uncontrolled bms.  Prior to this he was always constipated, so we were kind of shocked.  His liver enzymes are also elevated.  He does have some disease in the liver.  He had a chest ct a couple weeks back due to fluid in the lungs and that also showed all the disease in his chest was stable, which was great news.  it just seems like in the past week his health has deteriorated quickly...  there are more bumps on his head and i even noticed a lump in his shoulder and side.  is it even possible that this is all from the ipi working or should i prepare myself for sad news?  his full body ct is tomorrow or tues and we get results the next day. 

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Tim--MRF's picture
Replies 2
Last reply 8/31/2010 - 4:16pm

Her name is Estela Medrano, and she was a scientist at Baylor who focused on melanoma.  I have pasted a synopsis of her work below for those who are interested, but must confess that I have trouble finding it.

There exists a network of dedicated, brilliant scientists who work long hours for not a lot of pay, trying to gain further understanding into what causes melanoma.  These researchers lay the groundwork for all the clinical development that takes place, and every clinical trial had its origin in their work.  Their names will not be on the news, and they will not be interviewed for their view on melanoma.  But without them drugs that are all the rage now--ipi, PLX, etc.--wouldn't exist. 

I have been impressed with the collegiality and cooperation that is evident among this group.  We heard this evening about Estela's untimely death and my inbox is full of people expressing sympathy and a sense of loss.

She did not have melanoma, but she was a melanoma warrior, and the fight is a bit poorer for her passing.




Estela's work at Baylor:

The second project is focused on the role of the protein SKI in melanoma tumor progression. Ski encodes a nuclear protein that binds DNA in association with other proteins and can act as either an activator or repressor of transcription. Using the yeast two-hybrid system, we have demonstrated that SKI physically associates with Smad2 and Smad3, two transcriptional activators that mediate the TGF-beta response. SKI suppresses TGF-beta signaling by binding the MH2 domains of Smad2 and Smad3, and repressing promoters bound by these proteins and the common mediator Smad4. We propose that SKI functions as a potent oncogene in melanoma cells by counteracting the effect of the TGF-beta pathway that usually functions to suppress cellular transformation. We are analyzing additional SKI-protein interactions to determine their contribution to melanoma progression. Also, we have recently cloned the ski promoter to determine, by DNase foot-printing, electrophoretic mobility-band shift assays (EMSA), chromatin immunoprecipitation (ChIP), and reporter analysis, regulatory elements and factors involved in its activation during the malignant transformation of human melanocytes.

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Anonymous's picture
Replies 2
Last reply 8/31/2010 - 2:15am

You haven't posted in a week which seems untypical of you.

Are you alright?

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I had a mole off at my GP in September and after it came back melanoma I had it a larger excision in November 09. Now I have a small mole in the centre of the scar! EEK!!! Experiences??? Ideas? DO I call my GP, Plastic Surgeon or Dermatologist???

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Linda/Kentucky's picture
Replies 5
Last reply 8/30/2010 - 10:40pm

Just wondering about those of you who have finished the Ipi treatments how has your LDH have been?  My husband is at week 17 and we received his lab work yesterday and it had been going up since taking IL-2 but after his 3rd Ipi infusion his LDH was 1054 and yesterday 5 weeks after final was 1304 I know this is very high.  Clinical trial nurse said not to worry she has seen this happen before.  Starting to feel really discouraged.  He also found out he was anemic HGB 8.8 so we will try to find out the source of the bleeding could be from taking alot of Ibuprofen but it's the only thing that gives relief from aches.  Again I'm afraid he is not going to be a responder, does take longer sometimes.  His scans showed no new mets but increased size of mets following Ipi treatment. 

P.S. He did get the hair depigmentation and vitiligo after 2nd tx.



husband stage IV

I can do ALL things through Christ who strengthens me! Phillipians 4:13

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Anonymous's picture
Replies 6
Last reply 8/30/2010 - 10:08pm
Replies by: Linda/Kentucky, Anonymous, Janner, mkummerle

Hi Everyone,


This might be a dumb question but can anyone tell me if bone mets hurt????

I have been having pain along the lower part of my spine. When I touch the bones in my spine in my lower part, the bones do not hurt. However,when I am lying down then get up. I feel pain. Of course, my mind jumps to the worst scenario.

Anyone experince bone mets in the spine or anywhere else, your feedback would be sincerely appreciated.

Thanks you for reading my post & replying.

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himynameiskevin's picture
Replies 11
Last reply 8/30/2010 - 10:01pm

I'm leaving in about 15 minutes to start IL-2 for the first time. I'll be gone for about a week. Please send some positive thoughts, prayers, or anything my way, I need all the help I can get. See you all in a week. (fingers crossed) :)

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jag's picture
Replies 21
Last reply 8/30/2010 - 6:02pm

am going in for surgery on Tuesday for Craniotomy #6.  Sometimes I feel like it must be scary for new people to know that might be in their future, and so I hope this post doesn't end up causing someone to stop researching information regarding their particular situation and drive you away from the MPIP.  There are plenty of people who have had 1 brain surgery and done very well,  In my case my brain is very radiation sensitive, and so it is either surgery or necrosis, luckily last time it was necrosis(from previous SRS)and I am hoping the same results come through this time.  It has been 2 years since I have had any evidence of disease, and it has been four since I was initially diagnosed with a brain tumor.   So, if you are a newbie-this isn't a common situation and this may not end up being your situation at all.  Things may well never comeback if you are stage II or III.  That has been the case with many people.  If they do, address one issue at a time, and go from there.  First I thought melanoma was a death sentence, then I thought stage IV was a death sentence, then brain metastases were a death sentence, and so far none of that has proven to be true.  Don't read into the statistics whatever you do.   New therapies are coming out faster than ever, and more and more trials are adding up to improved statistics overall.  I am going into surgery with a very optomistic attitude, saying my prayers and there really isn't much else I can do.  Sometimes life gets out of your hands, there are some things one can control and some that one cannot.  Either way, keep on planning for the future and enjoy yourself.  When I first got diagnosed, I used to search this site and see tons of people dying and it scared me so much that I avoided scans as much as possible (sometimes to my own detriment) so whatever you do, remember, scans are your friends.  Even if there is a bad result, the sooner you get working on it, the better your outcome will be.



Insert Generic Inspirational Motto Here

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Linda J's picture
Replies 8
Last reply 8/30/2010 - 2:17pm

I just got back from Toronto.  I saw about five people, several surgeons who all think that I should do radiation first and then surgery.  The radiation is to "sterilize" the area around the tumor on my hip and hopefully shrink it a bit so the surgery will not be as extensive.  They will also be radiating my groin area at the same time and then I'll have a LND when the radiation is done.  The tumor on my side is just touching the muscle but not in it.

I am upset because the MRI showed that there are several lymph nodes involved and one of them is "deeper".  The deeper one is about 1cm.  Am I doomed because there are several lymph nodes involved???  Have other people had multiple lymph node involvments and still are doing well today??

They are going to see if the tumor in my side reacts to any of the the inhibitors so that hopefully I can do a clinical trial.

I am just so so so devestated right now.  I feel hopeless and I would really really like to hear that it is possible to survive a large tumor with multiple  and deeper lymph nodes involved. 

Please respond.  Thank you

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ErikaHouston2's picture
Replies 2
Last reply 8/30/2010 - 12:38pm
Replies by: Jim in Denver, PhyllisP

How long does it usually take you to get your results? Had PET CT on Friday @ 1pm .

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ALA's picture
Replies 5
Last reply 8/30/2010 - 12:14pm
Replies by: ALA, washoegal, Fen, molly

Sept 2009 I was diagnosed with stage IIB melanoma, 11 mm deep but not ulcerated removed from mid back, margins clean.  SNB was not performed as the doctor assumed lymph node involvement given the depth.  Whole body PET scan and sonogram of suspect lymph nodes at neck and arm pit were clear.  Because my insurance ruled this a pre-existing condition I could not afford the recommended adjuvant interferon therapy and opted for watchful waiting.  Coming up on a year now with no articulable symptoms of recurrence or remote metastases which brings me to the subject.  Is there a recommended progression of follow up tests (from least to most expensive or with the greatest chance of detecting disease) I should be considering at this juncture?  Best wishes to all, Alan.

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Bill G's picture
Replies 5
Last reply 8/30/2010 - 10:18am

At outset given odds 25% for  5year survival, because location on top of head 4mm+ tumor and numerous satellites

Bill G

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joy_'s picture
Replies 9
Last reply 8/30/2010 - 12:01am

My husband is 6 weeks into recovery from LND of the groin.  He still can't completely straighten his leg.  He says it feels like his tendon is too short (pulls from behind his knee up to his groin).  Is this normal?  Has anyone else experienced this?  If so about how long until things were back to "normal."

He also says he has a "big section" of the front side of his leg where he feels nothing.  Permanent nerve damage?  Get better over time?

I guess we could wait until his recheck in a couple of weeks to ask the Dr but you all are so kind and helpful that I thought I would go ahead and ask here.

Thanks in advance for any and all responses.


wife to Bill, stage IIIc

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uvagirl06's picture
Replies 14
Last reply 8/29/2010 - 7:25pm

I can't even believe I'm writing this, but here goes my introduction. I'm 28, female, and just diagnosed with melanoma. It is believed to be localized, but they do have to go back in and remove a larger area around where the mole was. I had another mole tested and it came back as highly abnormal (not malignant as far as they could tell) and something about possibly invasive. The pathologist actually called my doctor because they were so concerned since I'm so young.

I've had the normal sunburns, but I don't use tanning beds (with the exception of a few times before my wedding 6 years ago), and I'm not someone who is always in the sun.

My doctor is talking to a dermantoligst to see how we should approach this.

I'm so scared right now. I also have another issue going on in which I am having a kidney ultrasound today for. It could be nothing or it could be cancer which would be extremely rare for my age, but then again, I now have skin cancer at 28.

I'm hoping to find some comfort and community in this group.



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There's an update on Jerry on the otbb.  He is making progress.


Jackie W

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