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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Frannie55's picture
Replies 10
Last reply 10/21/2010 - 5:36pm

Just a quick Hooray! I am stage IV...last procedure was a Radiofrequency ablation of my liver to get 4 mets. I was so sure this would not be a good scan, but with the prayers from so many people and the immune building supplements I am NED.  Just wanted to pass on some hope for the newbies.

Frannie in West Michigan

Believe that you can or believe that you can't. Either way, you are right. - H. Ford

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KellieSue's picture
Replies 5
Last reply 10/21/2010 - 4:42pm

Hip surgery went well. I stayed in the hospital from Friday till Tuesday morning. Came home on crutches and am hobbling around quite well.

I have a lot of stairs in my house so I'm pretty confined to the couch but everyday is getting better. I'm still taking pain meds every four hrs but if I sleep through them at night I don't wake up in pain, just discomfort.  Have quite a long incision on my left flank, stitches come out on the 25th.

If all looks well after the Ortho appt. I will have scans the 29th and start my redose on Nov. 1st!

I'm actually excited, as crazy as that sounds. I think doing it again will really zap these bastard spots out of my thyroid! And I just have to get past 8 weeks of crappiness! At least I'll be done by christmas!

Guess that's it for now! Thanks for all the support!

Kellie(from Iowa), Stage IV

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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Replies by: Jim in Denver


"What we can learn from individual patients is often overlookedin oncology  he said, adding that many of these remarkablecases have led to the development of new treatment strategiesfor melanoma such as vaccinations against specific antigensand bone marrow transplantation. "From clinical observation,we can learn a lot from these remarkable cases," he said

Alan Houghton, M.D., chiefof immunology at Memorial Sloan-Kettering Cancer Center, NewYork

AS I continue my research I am uncovering amazing things about out immune system. If you don't get an immune response, you might be missing the "Danger Signal"

Three major events must occur to induce CD8+ T cell–mediated, tumor-protective immunity against melanoma

First , the T-cell receptor must be triggered by a (or multiple) self antigen–derived peptide MHC class I complex. Therefore, this event depends entirely on appropriate antigen presentation, which is most efficiently provided by mature dendritic cells. Peripherally tolerant or “ignorant” self-reactive T-cell clones, once properly activated, may serve as tumor-specific effector T cells.

Second, simultaneously with T-cell receptor triggering, a distinct second costimulatory signal must be delivered, mediated by IL-2, B7-1, or B7-2, which engage IL-2 receptors and CD28 on the surface of the T cell, respectively (17). A source of these cofactors for effective CD8+ T-cell stimulation can be provided by CD4+ T cells that release critical amounts of IL-2, or by mature dendritic cells that display an increased level of B7-1/B7-2 costimulatory molecules on their cell surfaces.

Third, inflammatory cytokines, including IL-1, IL-6, IL-12, and IFN-γ provide a third signal that acts directly on T cells, referred to as the “danger signal”. This signal was found to optimally activate TH1 differentiation and lead to clonal expansion of T cells.1

The inflammatory cytokines act to promote T cell responses. They include IL-1, IL-6, IL-12, TNF-α, and IFN-g produced by macrophages and/or dendritic cells. Th17 cells also plays a part by secreting IL-17 and others. The most notable role of IL-17 is it involvement in inducing and mediating proinflammatory responses. Neutrophils are the earliest cells to arrive at the inflammatory site.

While TGF-β is a critical differentiation factor for Treg cells, IL6 completely inhibits the generation of Treg cells induced by TGF-β. Instead, IL6 and TGF-β together induce the differentiation of pathogenic Th17 cells. With IL-6 missing in the microenvironment, Treg Cells flourish.

Anti-CTLA-4 blockage tilts the balance of the differentation of the T helper cells toward the Th17 phenotype. Once at the Tumor's microenviroment, it secretes IL-17, an inflammatory cytokine. This cytokine attracts the neutrophils cells to the tumor site. It then secretes chemoattractants, MIP-1 alpha, MIP-1 beta and MCP-1.

These chemokines, MIP-1alpha, MIP-1beta, and MCP-1 are recently reported to serve as chemoattractants for Th1 cells. MIP-1alpha and MCP-1 are also reported to enhance antigen-specific (CTL) Cytotoxic T Lymphocyte induction. Studies revealed that MIP-1alpha /beta released from neutrophils are involved in recruitment of macrophages, T cells, monocytes, dendritic cells (DC), neutrophils and NK cells.
MIP-1 attracts predominantly CD8+ T cells while MIP-1 attracts CD4+ cells, although there is some overlap between subsets in response to both chemokines.

The other Chemokine MCP-1, binds to CCR2 to accumulate monocytes/macrophages, DC, T cells, and NK cells, thereby playing an important role in innate and adaptive immunity. CCR2 is Chemokine receptor that is key determinant of leucocyte trafficking.
IL-2 strongly upregulates expression of CCR2. With the MCP-1/CCR2 interface, the cells can traffic towards the tumor’s microenvironment. The trafficking of the cells and inflammatory cytokines present the perfect storm in the tumor’s microenvironment to induce the right immune response to eradicate the cancer, Melanoma.






I thought you might want to know,


Jimmy B

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stillhopeful's picture
Replies 5
Last reply 10/21/2010 - 3:38pm
Replies by: LynnLuc, stillhopeful

As a next step, I am considering adoptive cell transfer therapy.  I'm interested in connecting with people who have gone through this procedure (successfully or unsuccessfully), or might also be considering it.

As I understand it, this procedure has been done over several years at the National Cancer Institute.  A similar procedure is also available at a cancer hospital in Seattle.  Recently, it became available at MD Anderson and Moffet (sp?).  Because of my HLAA typing and the fact that I have mucosal melanoma, I can go to MD Anderson or Moffet.  I think I will go to MD Anderson.  Nothing against Moffet; it's just that I already contacted MD Anderson before I learned that Moffet just started offering it as well.

I hope to hear from you!

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peacefrog521's picture
Replies 15
Last reply 10/21/2010 - 2:40pm

Im a 35 yr old female who had melanoma removed and i was sent for 6 month and then yearly checkups. Around one year and 3months ago I went to my doctor and showed him a lump where my original tumor was removed. He let it go as scar tissue...told me I was fine and said come back in a year. The lump on my side in that time had doubled and started throwing heat. I went back to my dermatoligist and she biopsied it and my melanoma was back. Went for a PET scan and found out Im in stage IV and it spread to my lungs and in my lymph nodes. I had the mass removed on August 20th of this year. My appointment to just start my clinical trials is Sept 13th JUST FOR THE TESTING!!! Does anyone think that this is too long to wait seeings as this cancer is an aggressive cancer from what ive been reading. I have two beautiful children..and a man in my life that I want to marry and have our little family. I have been thru sooo much from being hit..literally by a moving car...lost my mother after my daughter was born, and she was my best having a VERY abusive boyfriend ( father of my daughter.) getting cancer in 2007 and now its back with vengeance. I really cant catch a break. I am overweight and HATE the sun...yet I mite lose my life over a SUN cancer...I have never been so scared in my whole life...does anyone have any advise on this grows every 3-6 months but it seems like until im setup in a clinical trial...2 months are gonna go by...its spreading and it seems like no one!!!!!

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lhaley's picture
Replies 9
Last reply 10/21/2010 - 2:11pm

Today should have been my 1 year NED anniversary..... Received a phone call that the fna was positive for melanoma.  I discovered a lump on my arm about 9 weeks ago (yikes). Since we were in the middle of our move I went to the scheduled oncology appointment to meet my new local Dr. (this was supposed to be a meet and get to know each other).  She scheduled a PET /CT which came back clear.  We then moved on to a surgeon who measured it with an ultrasound.  Came back a month later and measured again. It grew a tiny bit. FNA which now came back mel.

Have a call into my mel specialist and all records have been faxed.  My one year cystoscopy is next week. 

So, I'm back in the fight again and not very happy about it!


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NIH Scientists Discover Secrets Of Helper T Cells Involved In Autoimmunity


Scientists at the National Institutes of Health have redefined the roles of several cytokines involved in the generation of immune cells implicated in severe autoimmune diseases. The study in mice showed that development of Th17 immune cells can occur without the presence of transforming growth factor (TGF)-beta, a mediator thought to be required for Th17 cell development. The study demonstrates that the interaction of three inflammatory cytokines (proteins that influence the behavior of cells) - interleukin-6 (IL-6), IL-1-beta and IL-23 - is responsible for the creation of Th17 cells that are more active in promoting autoimmunity than Th17 cells generated with IL-6, IL-1-beta and TGF-beta. These findings reemphasize the separate roles of IL-23 and TGF-beta in immunity and autoimmunity, and open up possibilities for the development of new therapies. The study appears in the current issue of the journal Nature.

You may want to go to Melanoma Missionary website and read the last couple of posts.

A race for a Cure!!!!


Jimmy B

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ValinMtl's picture
Replies 6
Last reply 10/20/2010 - 7:02pm

This has been a pretty sad week on the board. Losing both Wil and Kurt. It’s difficult even putting my thoughts together but I thought I should report on yesterday's treatment.

I had a cat scan prior to starting the trial and a pet scan 2 weeks (which was scheduled) after my first ipi treatment. Dr. G. gave me the results yesterday, prior to 2ndipi treatment.  She found the pet scan much more thorough than the cat scan and will be suggesting to the trial director that I have a pet scan rather than cat if it meets the protocol standards.

The main difference was that the pet noted a 5 mm focal abnormality in the posterolateral aspect of the left pulmonary lower lobe.  It’s very small but they will definitely be keeping an eye on it.

There was much more activity in my lymph nodes in the leg than in May’s scans. As well, lymphedema in the right leg, appears more severe than on the prior study. Not a surprise, since my tumors went from about 20 to more than a 100 between scans.

So what’s the good news. Dr. G. noted that some (as in quite a few) tumors seem to be drying out, she has seen that before when a patient has responded to ‘temodar’ .  Both my husband and I find that my leg appears not to be so angry.  Is ‘ipi’ working?  Let’s see what happens in the next few weeks!

Side effects of 2nd treatment..nothing to date.  Val

Live Laugh Love Nothing is worth more than this day!

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donswife's picture
Replies 6
Last reply 10/20/2010 - 6:16pm

Hello - we are currently in the process of comparing IL-2 versus MEK inhibitor as a treatment for my husbands melanoma. He had tumours on his leg and had isolated limb perfusion and infusions. Now the cancer has spread to a few tumours located in his abodomen. Does anyone have any experience with IL-2? We are currently receiving conflicting advice from the US v our Canadian doctors. thank you, donswife.

Never Give Up, Never Surrender

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lmato17's picture
Replies 14
Last reply 10/20/2010 - 5:50pm

I am being offered PLX4032 at Yale. Im not sure if I want to take the drug as I feel like it is a tease. All the research shows that the tumors start dissipating and then after months they come back with a vengeance. Has anyone taking this drug and had long term positive results? What are the side effects? Decisions decisions!! Im so sick of it. Any help would be greatly appreciated.



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-The melanoma fist was found when she was 25 and they cut it out of her lower leg.
-Now at age 55, it moved into to her limp nodes on the same leg.
-They surgically removed the limp nodes and she had a major infection to deal with for several weeks.
-After more biopsies and appointments they found that the cancer had moved in the form of a tumor wrap around her main artery in her leg.
-They gave her 6 months to live and told her there is nothing else they can do.
-I have heard of people getting through these things or at least having hope and living a longer healthier life then they would have if they had given up.  
-My main concern is finding somewhere that treats mind body and soul.  She needs to have someone to talk to who is positive and makes her feel better, and this has not happened.

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Wendi Lynn's picture
Replies 13
Last reply 10/20/2010 - 4:28pm

Here is my background:

Mole removed and diaginosed as MM on 5/27.  WLE on 6/15.  FNB for enlarged lymph node on 9/1 positive for MM.  PET scan on 9/13, questionable for lymph nodes under arm.  No further testing done.  Modified left neck dissection - 32 lymph nodes removed on 9/22 - only one positive for MM. 

Today I return to my oncologist for my 2nd meeting with him (met with him first on 7/1).  He is not a melanoma specialist and honestly I'm not sure how much experience he has with it at all.  I'm wondering what questions I should be prepared with today.  I've read here that people take alot more tests than I've had so I'm not sure if I should be requesting them (blood, brain scan, CAT scan).  When I did meet with him the first time, he did say that if the lymph node came back positive that we would do Interferon. 

What are the key things I need to ask for now?  The doctors, so far, have not been very willing to volunteer info or tests (I'm assuming because I have HMO insurance), so I'd like to be prepared to ask for those things up front.

Thank you!!!


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skysar's picture
Replies 6
Last reply 10/20/2010 - 2:09pm

I am going to have my 3rd treatment this week.  Leaving for MDA tomorrow for scans.  We are still going thru with the scans even tho I only had the Temador for the 2nd treatment due to a rash I developed.  Noticed mainly nausea, headache, low grade temperature.  We will see what this treatment brings.  My white cell count is low as well as the neutrophils.  Also my eisonophils are high...maybe due to the rash, bronchitis.




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bluepeople's picture
Replies 7
Last reply 10/20/2010 - 1:42pm

 So my husband was recently diagnosed stage IIc, did surgery and had his PET scan yesterday.  Found out today that the PET scan was clear!  I was so worried that something would show up.  It seems that melanoma never really goes away, but this is such good news for us.  He is going to attempt the year of interferon treatments and we'll go on from there.  I just wanted to share my excitement and thank people for their support on this board. 


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sharmon's picture
Replies 5
Last reply 10/20/2010 - 1:09am

Hello, Since February and again  last week Brent had his scans and continues to be stable and they think one of his tumors in his lungs is completely gone.  He is now on his 9th month and the rash is managable.  He has some fatique but able to do most anything he wants to.  As part of the treatment they wanted to test the tissue again for mutation changes and decided to go into the groin this time as they thought that the lymph nodes that had shown up in the scans would be easier to reach than the lungs.  Well the proceedure never got and melanoma out of those spots.... only lymph fluid and they tried two different spots that showed up on the scans!!!!.   So we have to try to biopsy the lung tumors in December.  Interesting... his doctor was out of the country last week and we are going to talk to him to go over the scans and results this week.  Good luck to all of you and thanks for being there.  We read every post.


Sharon and Brent ( stage 4)

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