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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ZymoGenetics Reports Favorable Survival Data From IL-21 Phase 2a Clinical Trial In Melanoma

ZymoGenetics, Inc. (NASDAQ:ZGEN) today announced positive survival data from a Phase 2a clinical trial in metastatic melanoma with recombinant Interleukin 21 (IL-21) as a single agent. Median overall survival was 12.4 months, and the percentage of patients surviving at 12 months was 53%.

"The median overall survival of 12.4 months in the Phase 2 study with IL-21 in advanced melanoma patients is very encouraging," said Eleanor L. Ramos, M.D., Senior Vice President and Chief Medical Officer of ZymoGenetics. "We look forward to further results from an ongoing IL-21 Phase 2b randomized clinical trial in melanoma."

The open-label, single-arm, multi-center Phase 2 study was conducted by the NCIC Clinical Trials Group in Canada. A total of 40 patients with Stage 4 melanoma were enrolled and treated with IL-21 using 3 dosing regimens. Previous results for the clinical trial were presented at the American Society of Clinical Oncology 2010 meeting. Overall response rate was 23% in 39 evaluable patients, and median progression-free survival was 4.3 months. Common adverse events were fatigue, rash, fever, myalgia, anorexia, chills and nausea. Responses were not dependent on B-Raf status.

About Interleukin 21 (IL-21)

Interleukin 21 (IL-21) is a cytokine that modifies the function of cells in the immune system. IL-21 activates several types of immune cells thought to be critical in eliminating cancerous or virally infected cells from the body. Specifically, IL-21 enhances the activity of natural killer cells and has multiple effects on cytotoxic T cells. This novel immunotherapy has demonstrated antitumor activity in multiple tumor types (metastatic melanoma, renal cell cancer and non-Hodgkin's lymphoma) as a single agent and in combination with other therapies. More than 250 patients have been treated with IL-21 in clinical trials. The lead indication is metastatic melanoma, where IL-21 has shown efficacy.

About the NCIC Clinical Trials Group

The NCIC Clinical Trials Group (NCIC CTG) is a cancer clinical trials cooperative group that conducts phase I-III trials testing anti-cancer and supportive therapies across Canada and internationally. It is one of the national programmes and networks of the Canadian Cancer Society Research Institute (CCSRI), and is supported by the CCSRI with funds raised by the Canadian Cancer Society (CCS). The NCIC CTG's Central Office is located at Queen's University in Kingston, Ontario, Canada.


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Immunocore Announces Clinical Trials Of New Treatment For Advanced Melanoma In UK And USA
(NOTE: I believe one has to be positive for the HLA-2A haplotype -- but not sure// Hawaii Bob, Stage IIA)

Researchers at Immunocore Limited announced that IMCgp100, a targeted therapeutic for the treatment of advanced metastatic melanoma, has received regulatory and ethics approval and has opened enrolment for clinical trials in the UK and USA. IMCgp100 is the first clinical candidate originating from Immunocore's innovative ImmTAC technology platform and a new treatment could benefit many thousands of patients diagnosed with skin cancer each year.

Melanoma is a form of skin cancer that accounts for less than five per cent of cases but causes the vast majority of skin cancer deaths. The American Cancer Society estimates that 68,130 new melanomas will be diagnosed in the US during 2010 and 8,700 deaths from this disease will occur. 10,672 cases were diagnosed in the UK in 2007 and there were 2,067 deaths in 2008. Incidence rates for melanoma have increased in the last thirty years and, unlike other common cancers, melanoma has a wide age distribution.

Patients who are diagnosed early are treatable with surgical resection, although in many the disease will recur within a few years. If melanoma continues to the late stages and becomes metastatic the prognosis is poor, with average survival times of six to nine months. Chemotherapy is the most common treatment, but the response rate is very low so there is a high level of unmet need for more effective therapies.

In the UK, the Medicines and Healthcare products Regulatory Agency (MHRA) Medicines Division has approved a Phase 1 dose finding study in patients with advanced malignant melanoma. The two-part study will establish a tolerable intravenous dose of IMCgp100 and then assess the effect of this dose on pharmacodynamic markers when given repeatedly to a larger group of patients.

Recruitment for the clinical trial has commenced at three leading hospitals in Oxford, Cambridge and Birmingham and the first patient has received treatment.

Professor Mark Middleton of the NIHR Biomedical Research Centre, Oxford said: "We need new treatment options for patients with metastatic melanoma that not only extend lives but also improve quality of life. This clinical trial will generate the first data on this promising novel reagent IMCgp100".

Immunocore's ImmTAC technology platform builds on expertise with high affinity T cell receptors and has the potential to target a range of cancer and chronic viral diseases that are not accessible to conventional monoclonal antibodies. IMCgp100 is the first product in the pipeline to enter a clinical trial and the company has recently secured significant new investment to take additional programmes into the clinic.

Dr Bent Jakobsen, founder and chief scientific officer of Immunocore, said: "We have worked for over ten years trying to overcome immune tolerance to cancer. Tumour cells often express only very low levels of their signature antigens and thereby hide from the immune system. We take human T cell receptors which recognise specific cancer antigens, in this case gp100 for melanoma, and enhance their binding affinity so that they can target the cancer cells. The engineered T cell receptor is bound to an antibody fragment that redirects T cells to destroy the bound tumour cell. I am very excited to see the first candidate advance into clinical trials".

In the USA, the Food and Drug Administration (FDA) has approved a Phase 0 or Exploratory Trial. This study, in which the drug will be injected directly into melanoma tumours, is designed to complement the UK study by shedding light on how the drug works, and at what concentration.

"This is a novel approach to the challenge of mobilizing the immune system's ability to recognise and disable cancer cells. In this study we will assess their effectiveness by analysing tumour samples from melanoma patients for evidence of local immune stimulation," explains Professor Carl June, MD, director of translational research at the Abramson Family Cancer Research Institute (AFCRI) at Penn, which will conduct the US trial.

"The number of melanoma cases in the US is increasing and although early-stage melanoma can be treated surgically, we urgently need effective therapies to manage late stage metastatic disease," notes Leslie Fecher MD, assistant professor of Medicine and principal investigator on the trial. "As a novel targeted immunotherapy, IMCgp100 may be a promising new approach to tackle this intractable disease."

Note: The investigators in this study have no financial interest or other relationship with Immunocore Ltd, apart from their scientific collaboration in conducting laboratory experiments and planning human clinical trials.


About Metastatic melanoma

Melanoma is a form of skin cancer that accounts for less than 5% of cases but causes the vast majority of skin cancer deaths. The American Cancer Society estimates that about 68,130 new melanomas will be diagnosed in the United States during 2010 (about 38,870 in men; 29,260 in women) and 8,700 deaths from this disease will occur. 10, 672 cases were diagnosed in the UK in 2007 and there were 2,067 deaths in 2008. Incidence rates for melanoma have increased in the last thirty years and, unlike other common cancers, melanoma has a wide age distribution. In recent years, the increases have been most pronounced in young white women and older white men.

Patients who are diagnosed early are treatable with surgical resection, although in many the disease will recur within a few years. If melanoma continues to the late stages and becomes metastatic the prognosis is poor, with average survival rates of only six to nine months. Chemotherapy is the most common treatment for patients with metastatic melanoma but the response rate is very low. There is a high level of unmet need for more effective therapies.

About ImmTACs

IMCgp100 is a product derived from Immunocore's ImmTAC™ technology platform.

ImmTACs couple the unique ability of affinity enhanced T Cell Receptors (TCRs) to target cancer and virally infected cells based on intracellular antigens that cannot be treated using traditional antibody based approaches, with a highly potent anti-CD3 mediated T cell redirection system.

Immunocore has developed processes that allow it to isolate human TCRs specific for a target of interest and to create soluble versions whose affinity has been enhanced several million fold. These engineered, disease -specific, TCRs are fused to an antibody fragment that binds a cell surface protein called CD3 which is found on the surface of the killer T cells of the immune system. ImmTACs target the diseased cells and redirect any T cell touching them to kill, even if that T cell would normally only recognise the common cold.

Unlike traditional immunotherapies such as cancer vaccines or immune-stimulating agents such as anti-CTLA4 antibodies, Immunocore's ImmTACs have been specifically designed to overcome the antigen-down regulation that has limited the effectiveness of immunotherapies to date. Pre-clinical tests indicate that they can achieve potent T cell redirection against cancer cells that have lost almost all of their cell surface antigens through down-regulation.

About IMCgp100

IMCgp100 is an ImmTAC reagent specific for a peptide derived from the well validated target protein gp100, presented by HLA-A2; this target being present in approximately 50% of melanoma patients. IMCgp100 demonstrates potent activity against melanoma cells in vitro, including difficult to treat cancer stem cells

Immunocore Limited

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vickirs's picture
Replies 2
Last reply 10/22/2010 - 1:12pm
Replies by: vickirs, Sherron

On Sept 10 I had to have surgery because scans showed tumors invading colon and rectum.  Had to get colostomy and all visible tumors removed in pelvic area.  It was a very hard surgery.  Had to be in ICU for 6 days and recieve 2 units of blood.  Two weeks later developed naval orange size infection in pelvic so 8 more days in hospital and I am still draining and on antibiotics.  I had been on ym155 from may through sept. and failed that trial.  Thank God I had to have scans every 6 weeks because my surgeon told me that I would have been dead within a few weeks had I not had surgery.  Unfortunately he could not get the melanoma out of my liver so the surgery just bought more time.  My oncologist is waiting for me to heal all the way so that I can begin IPI.  My question is, has anybody else had to get a colostomy and how long does it take to feel better.  It has been a very long 6 weeks and I still feel week and tired with a lot of tail bone and pelvic pain.  I know 2 of my tumors there were bigger than 3 inches and I had some colon removed and the cancer had invaided the rectum.  After all of this shit it came down to this...  I went to my daughters football game last friday night (my first true outing since surgery) and my cheer leading, 15 year old daughter came up to me during half time as I was talking to friends and gave me a hug and kiss right in front of everyone.  If that doesn't make it all worth it I don't know what does.  How many 15 year old girls would actually want to be seen with their parents.  I am truly blessed for this extra time I have been given. 

melanoma is a word...not a sentence

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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/ 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 what future options can I look at?? I think I am exhausted of reading studies and trials etc rest for the weary! -Lynn

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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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 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


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.


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!



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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!!!


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