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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LynnLuc's picture
Replies 5
Last reply 10/22/2010 - 5:59am

I have a question maybe someone can help me with...Plans! You know...plan A, Plan B, etc etc...I have been going through mine and now I am stumped!

I know some people would say not to stress it...but it's melanoma and somehow I don't see an end to my plan making...Yes I am stage 4 NED...but the beast is a tough one to slay.

I am currently in a MDX 1106 (anti PD-1 ) trial plus injections of  proteins/peptides...my wish is that it keeps me NED...HOWEVER...given the current trend  of Melanoma ...I need more plans...

Currently the trials out there appear to exclude anyone who has used other immunotherapies...so what future options can I look at?? I think I am exhausted of reading studies and trials etc etc...no rest for the weary! -Lynn

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

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Sherron's picture
Replies 5
Last reply 10/24/2010 - 12:28pm

Hello All - well, Jim went to the VA center in Denton, Tx. on Monday, Oct 18th..the doctor examined him...He is definitely Stage IV, which I had already figured that out...The doctor does not like the way his stomach felt, nor his coloring.  They did blood work on him...and have started him on pain medication.  They wanted him to wait until Dec 3rd to come in, but my daughter-in-law, bless her heart, is a good advocate for us...She told them that was not acceptable,  This was last Friday..Well, fortunately, they let him come in on Monday., the 18th.  They called my daughter-in-law because they could not reach my husband.  I was on my way to work on Tuesday morning, they said it was an emergency that I need to take to VA ER  now.  I turned the car around and met my daughter in law at the house, went in, woke him up and said you need to go the hospital...I thought there would be a huge argument over this...No, he agreed..His hemaglobin (sp) which last year was 18 was now 6.3....He needed a transfusion.  We drove to the VA across Dallas, got to the ER and they got him right in...by then, it was down to 5.3....they admitted him and gave him 4 units of blood over a period of 9 hours.  We were there for 2 days,...they released him last evening,   with it up to 9.8, which is still not good.  I have a feeling we might be doing this again soon.  I  have scheduled another appt in the VA center in Denton to check his blood on Nov 1st.  His liver enzymes are perfect.  The doctor thought they would be off the wall.  His color was awful.  He looks pinker now, but still not eating really good.  Of course, they wanted him to do a colonoscopy and upper GI, but of course Jim was not ready to do this.  The oncologist, said when it goes back down, he will give him another  transfusion...maybe by then Jim will be open to a colonoscopy..If it's Mel, maybe they can remove it and resesction...You all know  how hard it has been for me to get him to the doctor, so just getting him to the regular VA check-up for pain management was a big deal....and then the hospital....but he was so far down, he did not give me much trouble at all.  I was shocked...So, am hoping and praying that if his levels go down again that, he will be open to the colonoscopy.  They called his blood levels critical...The VA doctor also told us to go file an Agent Orange Claim right now.  So we will be doing that in the morning.  Please keep us in your prayers.

Take Care,

Sherron, wife to Jim

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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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NIH Scientists Discover Secrets Of Helper T Cells Involved In Autoimmunity

 

WHAT
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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EricNJill's picture
Replies 11
Last reply 2/1/2011 - 6:50am

We are considering this trial for my husband Eric.  I was wondering what your experiences are with this drug.  Thank you!

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mrsmarilyn's picture
Replies 9
Last reply 11/1/2010 - 4:08am

Hello-Everyone.  Just want to say my brother Gary is at his 9 month mark on GSK Braf-all METS almost gone.  Even one on his lung.  He has been invited to speak at a group of researches in Nashville-based on his progress.  How is anyone else out there doing on GSK Braf?!  He was asking me to share the good news and see what the progress is of anyone else out there.  Before he went on GSK Braf- Mets were going out of control.  He will continue on - and my best wishes to all - thank you again for any feedback!  Feel free to email direct.

MrsMarilyn

Sister of Gary (Stage IV)

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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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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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Rebecca and Bob's picture
Replies 10
Last reply 10/22/2010 - 1:57pm

MRI and CTSCANS clear.  15 months NED hoping to keep hearing that news. Still on every 2 month but they said we can come back mid - January after the holidays... So happy, so happy.

Thanks everyone on this board for always being there!

Rebecca

Believe

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ShariC's picture
Replies 13
Last reply 2/28/2011 - 6:09pm

Hi Everybody - Thanks for being part of such a terrific resource!  I've been reading for a month, or so, and now am hoping to get some advice:  Here's my diagnosis and treatment history:

- I was diagnosed in Mid-July 2010 with Stage IIIb Melanoma after I found a lump in my armpit (it was the enlarged lymph node).  After surgery - complete axillary dissection (22 nodes taken, 1 macromets, 1 micro), my pathology came back as T4aN2bM0 - Stage IIIb. 

- I was told by the local oncologist that he would not recommend interferon and that I should monitor and wait.  I requested to be referred to a specialist.  I was referred to the Mayo Clinic.

- Dr. McWilliams at the Mayo Clinic recommended Luekine (GM-CSF) - a year.  Two weeks on and two weeks off.  He also recommended local radiation treatments to the axillary region.  (I've completed this radiation treatment but haven't started the Luekine, yet.

- Last week, I saw Dr. Rene Gonzales at the University of Colorado Cancer Center as a second opinion.  He recommended Bio-Chemotherapy.  A treatment that includes 5 days in the hospital receiving the following:  IL-2, Interferon, Dacarbanize (DTIC), Cisplatin, and Vinplastine. 

Here's my line of questioning:  I understand that this is fairly aggressive treatment and is unusual for Stage III.  Has anybody gone through something like this?  Are any other major cancer centers providing this kind of treatment for Stage III resected Melanoma?  I like the idea that it could increase my chances for disease-free survival (don't we all!) - he says up to 75%.  But, is this unrealistic?  Also, would this mean that if it does progress to Stage IV that I wouldn't be able to do this treatment?  Hmmm? 

Also...I know that I will just have to eventually (as my Doctor says) "settle on one doctor and trust the treatment path"...I just want to make sure I'm ON the right path! 

Thanks for any and all advice!

- Shari

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EricNJill's picture
Replies 19
Last reply 10/22/2010 - 8:12pm

Due to progression and complications during our stay for a 2nd dose of Intralymphatic Vaccine, we are stopping treatment and searching for something new.  This was at the advice of professionals.  Eric has tested positive for BRAF and they are encouraging we find a trial for BRAF but since all Eric's tumors are either vascular and sub-cutaneous we are concerned about the return of melanoma after the 8-9 months with doing PLX4032. 

He's done the following treatments:

HD Interferon & LD Interferon

Clinical Trial of Abraxane, Avastin & Carboplatin

HD IL-2 (44 doses)

Clinical Trial - Dendric Cell Vaccine

Clinical Trial - Intralymphatic Vaccine

Does anyone have advice on what our next step should be? 

Thanks, Jill & Eric in OH

 

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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!!!

Wendi

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makedoandmend's picture
Replies 12
Last reply 10/28/2010 - 11:42am

For those that don't know I was diagnosed with an ulcerated malignant melanoma with a breslow depth of 9mm in early sept. It was nodular melanoma and there was a satellite lesion below/to the side.  The primary was removed during biopsy by the derm. Went to oncologist who schedule wle and snb.  Pet Scan came back with 4 small nodules on my lung. Those didn't light up but we are thinking they are from a nasty bout of pnemonia I had a year and a half ago.  The onc said it is more likely scar tissue than mel.  Nothing lit up anywhere, including the groin. I was really psyched about that because I thought for sure it travedled to the groin.    WLE excision went well, margins are clear. Just have a chunk of my calf missing, no big deal.  Skin graph taken from my other thigh so far so good.  They did a Sentinal Node Biopsy on my right groin.  Took ten nodes.  1 out of 10 were positive there was a mitotic rate of 4/mm2.  Not really sure what that means.  I now am scheduling another surgery on the groin and they are going to remove all of the remaining nodes.  So at this point I believe that I am stage IIIC but not sure.  My concern is that since the groin didn't light up on the PET, what else is there that didn't light up.  My surgeion mentioned Lymphedema and putting some drains in the groin.  I had one oncologist offer interferron or an adjuvant ipi trial 50/50 placebo.  I had a second opinion set up for Oct 21st  at sloan but have to push that back until after the surg.  I was just wondering if anyone can give me some insight on where I am and where I need to be.  I guess maybe it just depends on how many nodes come back positive after the full dissection.  I just feel like I am not being agressive enough.   I have been reading a lot about boosting the immune system and I am pretty excited about this since I would like  to give my immune system the best shot in this fight.  So besides exercising which I know is key are there any specific immune system diets or immune system supplement/vitamin regimens that people are doing?  Any imput on what I should be eating/taking would be appreciated.  Thakns to anyone who posts here. I love this board. I feel like its such a great weapon to have in this fight. 

 

pat on li

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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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n/t

Insert Generic Inspirational Motto Here

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