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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StevenK's picture
Replies 26
Last reply 6/10/2012 - 2:45am

My oncologist told me I have a decision to make. My depth is .6mm, but it is Clarks Level IV. It was excised with clear margins all around, but he says there is a 2% chance it has spread to my lymph nodes. A Sentinel Node Biopsy is the only way to know that for sure. It seems like a pretty large procedure to do when there is a 98% chance that it wont be of any benefit. I hate to admit that the size of the scar that it will leave me on my face and neck is a factor for me. To be honest, if it was anywhere else besides my face, I wouldn't have such a dilemna.

My oncologist told me that he himself would not get the procedure done if he was in my shoes. He said that 98% is pretty good odds. He did offer me as an intermediary procedure an ultasound, but he said that's not nearly as reliable as an SNB. I know that I'm lucky to be dealing with the kind of odds that I am. I'm deeply thankful for that. I'm leaning towards the ultrasound and so is my sister, who has been wonderfully supportive. May I ask... if you were were in my situation before, what did you do and why?   

Much thanks, Steve

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Replies by: LynnLuc, melissa ann

Anti-PD-1 (BMS-936558, MDX-1106) in patients with advanced solid tumors: Clinical activity, safety, and a potential biomarker for response.
Suzanne Topalian, MD Johns Hopkins University School of Medicine Baltimore, MD


Video at The ASCO 2012 Meeting

Anti-PD-1 (BMS-936558, MDX-1106) 

 I have been following this new treatment for a number of years and am trying to get my arms around the science. 

When a T-cell is activated, the PD-1 , CTLA-4, ICOS, and others molecules are expressed and upregulated to the surface of the T-cell. Both PD-1 and CTLA-4 are checkpoint molecules that regulate the immune response. They are inhibitory to the point that they can shut down T-cell activation. ICOS on the other hand is a costimulatory molecule that is needed, along with IL-2 to keep the T-cell activated and help proliferate the T-cells.Elevated levels of ICOS mRNA can be detected already one hour after TCR engagement, followed by surface expression within 12 hours. Protein expression reaches a maximum after 48 hours and declines then slightly.

It has been shown that ICOS is inducible within 48 hours of T-cell activation on both CD4+ and CD8+ cells; after; CD28 signaling; whereas cytotoxic T lymphocyte  antigen-4 (CTLA-4) ligation prevents its upregulation. 

First, CTLA-4 engagement on resting T-cells was found to indirectly block ICOS costimulation by interferring with the signals needed to induce ICOS cell surface expression. Second, on preactivated cells that had high levels of ICOS expression, CTLA-4 ligation blocked the ICOS-mediated induction of IL-4, IL-10, and IL-13, suggesting an interference with downstream signaling pathways. The addition of IL-2 not only overcame both mechanisms, but also greatly augmented the level of cellular activation suggesting synergy between ICOS and IL-2 signalling.

So after T-cell Activation, IFN gamma is secreted (30 minutes then IL-2 is secreted (45 minutes in) and so on ...


The surface expression of ICOS is within 12 hours of activation. Since CTLA-4 blocks ICOS costimulation, Yervoy (anti-CTLA-4) must be used to counter the surpressive signalling. PD-1 also upregulates to the surface in the early activation process. PD-1 is upregulated within 24h after T cell activation, PD1-Mediated Suppression of IL->2 Production Induces CD8+ T Cell ...anergy was associated with a marked down regulation of IL-2.

Blockade of PD-1 by monoclonal antibodies specific to its ligands (PD-L1 and PD-L2) results in significant enhancement of proliferation and cytokine (gamma interferon [IFN-gamma] and interleukin-2 [IL-2] secretion by tumor-specific CTLs. PD-1 blockade also resulted in down-regulation of intracellular FoxP3 expression by Tregs.

PD-1 blockade seem to augment the proliferation of the CD4+ helper cells.

Now you know why just using Anti-PD1 and or Yervoy as a monotherapy will not have a large response rate. Combinational Therapy is a must if we are to see synergistic responses. IL-2 also plays a major roll in the immune response. IL-2 is added to help maintain fuctionality and survival of the Cytotoxic T Lymphocytes (CTLs) that is despartly needed to eradicate the Melanoma tumors. Our immune system can cure cancer.


Jimmy B


“It is not the strongest of the species that survives, nor the most intelligent, but the one most responsive to change.”

 ~Charles Darwin~


Take Care

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OB Mike's picture
Replies 2
Last reply 6/8/2012 - 11:29pm
Replies by: emichaelward, Tim--MRF

After 2 stomach resections I developed a new tumor in my abdomen. It is now quite large! I finished four doses of ippi in mid-April without any noticeable side effects... But now I seem to be having "minor" delayed effects?! Fatigue, lethargy, dehydration, low blood pressure, blood clotting DVT, mild diarrea and eye pain! I have had two blood transfusions and a hydration IV. I am on blood thinner shots, blood pressure meds and started narcotics for pain. So I guess my question is... Can just the cancer cause all these effects and/ or is it the battle with the ippi, a sign that it may be working?

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Shelby - MRF's picture
Replies 1
Last reply 6/8/2012 - 9:36pm
Replies by: Gene_S

Please join us for a one hour post-ASCO (American Society of Clinical Oncology) teleconference hosted by Dr. Lynn Schuchter and Dr. Georgina Long on June 18th, 2012 at 5:30pm EST.  You will hear 45 minutes of updates on the most current research that was presented at this huge scientific meeting and then have a chance to ask questions.  Registration is required and all of the information you need can be found here: 

We hope to have you on the call with us!  A recording of the call will be posted on our website shortly after the call takes place for those of you outside the United States or for those who cannot be on the call at that time.  Have a great weekend!

Shelby - MRF

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mike_nj's picture
Replies 3
Last reply 6/8/2012 - 7:50pm
Replies by: Anonymous, natasha

Well,  about 3 weeks ago or so, the right side of my face started to swell near my right ear and 2 days later a blackish lesion suddenly popped up on my right upper arm opposite my WLE.  First thoughts were possible connections with melanoma, as I am stage 3B out about 8 years. Primary was right upper arm in 1999 and in 2004 a big node was removed from my right axilla. This was followed by radiation and peptide vaccine clinical trial.

These strange events were in the same local vicinity. But I did remember that Dr Casey used to post and remind us not to look for zebras when it was more likely something else may be occurring

My doctor friend looked at me and suspected parotitis and presribed an antibiotic and my nurse daughter dismissed the black lesion as a blood blister, which can happen in my swollen, lymphedema ridden arm.  Just never had such bad timing.with 2 simultaneous signs like these

Luckily, both the doctor and the nurse seemed right as both issues went away in a week or so.

Routine chest X-ray the following week showed no interval change so my 8 year status still looks OK.

Over the years as one holds onto hope and in the corner of consciousness, mindful of a possible transition back to active melanoma, weird coincidences like this happen from time to time for many of us.  Luckily, I have been fortunate so far and thank God for that.

All the best to all those with melanoma and their caregivers.  God bless all of you.

I am sure to face more mind games in the future and I hope to recall Dr Casey's advice with my first thoughts.

Mike from NJ

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noisy77's picture
Replies 4
Last reply 6/8/2012 - 7:32pm
Replies by: Anonymous, susanr, noisy77, aldakota22

Hello All -

My Mom's first set of scans since toe amputation, groin lymph node disection (5 positive nodes), consultations with Hodi (Dana Farber) / Chapman (MSK) and radiation treatment are on Sunday the 10th.  This is almost 5 months after her first scanned used for staging (she was stage 3c).

Can you all think positive thoughts for her?  I am confident it will come back NED but I really appreciate all the positive vibes.

Thank you!!


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Anonymous's picture
Replies 9
Last reply 6/8/2012 - 7:27pm
Replies by: Cindy33, Janner, jaredmiller16, natasha, Anonymous, EmilyandMike

After my diagnosis, I was at the derm every three months and now I am at the derm every six.  However, while I am pregnant, he wants to see me every three months. I was there right before delivering my son last week.

I noticed while nursing that I have a new mole under my breast. Lets just say this mole is not a result of sun exposure :) Because of the odd place, I do not think the derm checked this mole in my last visit. Its not visitable on our pictures and I do not remember him looking there..

Needless to say, I am not to worried about it. Its a reddish color, perfectly symmetrical, and has the texture of a skin tag. It looks nothing like what my mel did.

But, I read on a website that any new mole should be reported to the derm immediately regardless of what it looks like. Although this is good advice, I am wondering since I am pretty educated on mel if this is necessary since I go to the derm as much as I do. I get new moles all the time and I would be in his office at least once a month if I followed this advice. I will do whatever do save my life, but then again, I do not want to drive my derm crazy in the meantime. What do you all do?

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Jamietk's picture
Replies 4
Last reply 6/8/2012 - 7:14pm
Replies by: Cindy33, Jamietk, deardad

My surgical onc's PA at MDA told me he thought the red dots were prob just hemangiomas but certainly recommended a trip to the derm. Saw the first derm that could get me in, which was not my derm. She was not concerned about the red dots. Said they were just burst blood vessels, prob from injuring my arm (although my surg on PA thought not likely from trauma). In any event, neither are concerned, so I am not either. The derm did find a mole on my left side that she felt was likely mild to moderately dysplastic and wanted to watch it for now and biopsy it at some point. She did not want to biopsy it yet because she did not want to scar me any sooner than necessary. So I said let's go ahead and do that now, I don't like watch and wait if you think ultimately you're wanting a biopsy. She reluctantly agreed, but refused to do a punch. She would only do a shave. I respectfully declined a shave and requested a punch. She went on to tell me she will not do a punch because she is all about preserving the skin and minimizing scarring and punches scar too much. She did agree to set up an appointment for an excision.  She then commented on how bad my wle scar looked for being 7 years out, as well as other biopsies and blemishes on my skin, including my stretch marks. She said I did not have good skin and a punch would scar me too much. It was that point that I no-so-respectfully advised her I was 41 years old, weighed 183 pounds, and have had melanoma. A scar on the left side of my torso that no one but I would see was the least of my concerns. They set me up with an appt to excise it, but 5 minutes down the road I called and cancelled and asked to have my regular derm call me. This woman was just too concerned about the scars and not my health. Granted, maybe a mild to moderately severe mole at this time is not urgent for a biopsy, but she just went on and on about how shaves were so much better cosmetically. That was a waste of 2 hours I'll never get back.

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Kaley's picture
Replies 3
Last reply 6/8/2012 - 7:04pm
Replies by: Cindy33, Kaley, Janner

I had a superficial malignant melanoma removed 8 years ago. Stage 1B. Clear  SNB and margins. No lymph nodes involved.  Went on to live my life as told to do.  I was here 8 years ago and remember signing up to Janner's group for Stage 1 mel survivors.

This morning I woke up with a tiny raised mole on my neck.  It is dome shaped, perfect  dark color, shiny.  Unbelieveable how quickly this happened. It was not there last night when I went to bed.  Can this be a Nodular Melanoma? Can I have 2 separate melanomas? Is this possible, and has anyone ever heard of someone having 2 types of melanoma?  I'll take any and all advice. Thank you!!!!!!!!

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yoopergirl's picture
Replies 12
Last reply 6/8/2012 - 3:17pm

I had my cat scan yesterday and found that my lesion's are getting bigger and another one starting on my rib cage. I have been short of breath for over a week and that scan showed I have fluid between my lungs and heart. If it gets worst they will drain the fluid. I am having a couple of biopsies done on June 27th and a week later see the doctor so I can be put in a clinical trial. The trial is called Alpha Gal Trial, did a little searching online but not much info. Since I am Braf negative not much out there for me.

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Kathleen880's picture
Replies 6
Last reply 6/8/2012 - 2:53am
Replies by: tracygonnella, Mishka77, Bosandi, washoegal, Anonymous

Just wondering if anyone is getting treatment with Sylatron injections?  I'm going on my 6th treatment.  I will be doing this for one year. 

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deardad's picture
Replies 4
Last reply 6/7/2012 - 11:39pm

So here we are on the second round of Temador not knowing whether it is working or not. From the visible mets it doesn't look very promising.

He just finished 5 rounds of WBR which really for him he said was the hardest treatment so far. Ended up in the hospital to check for a suspected blood clot on his lung due a pain in that area but fortunately was ruled out. No explanation was given, they just gave him oxycodene for the pain.

He is more tired, but still up and about (I am hoping this is just the treatments and not the disease). Where to next? Who knows. Feeling quite sad for the what the future holds and I only hope that the WBR and temador can stabilise things enough to get him on another trial. We have lost so many lately and the reality is far to hard for me to contemplate at the moment. I am very close to my dad and cannot imagine him not here.


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The Melanoma Support Group in San Francisco is offered every Third TUESDAY from 2 pm - 3:30 pm at 2351 Clay St, Suite 137. Registration is required before attending this group. To register for this group or Melanoma Health Lectures call 415-923-3155 or email

More information can be found at

Healthy Regards,

-Community Health Resource Center

Community Health Resource Center... the next step to better health

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Greetings everyone,

In San Francisco every Third Thursday the Community Health Resource Center (CHRC) offers a Melanoma support group where participants join together for discussion, and to give and receive support from others sharing similar experiences. This ongoing group is facilitated by Kristy Buck, MSW, who also offers individual emotional support counseling at CHRC. Support group attendance is FREE, and refreshments are provided.

The Community Health Resource Center (CHRC) is a non-profit organization that offers nutrition and emotional support counseling, health education lectures, health resources, and health screenings to prevent disease and maintain wellness. Our services are offered based on donation or sliding scale fee.Registration is required before attending a support group. For more information or to register for a group, call 415-923-3155 or email

Healthy Regards,


Melissa Brown, Program Coordinator, Community Health Resource Center

2100 Webster Street, Suite 100, San Francisco, Ca

Community Health Resource Center... the next step to better health

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Hello everyone,

My name is Youri and I live in the Netherlands.
My father has been sick for a long time and after succesfull radiation therapies, my fathers melanoma's were stable for over a year. In the pas couple of months the melanoma's started growing again. Radiation and chemo didn't work this time. 

We heard about a new treatment, called R05185426, which possibly would lead to stabilisation, or even shrinking of the melanoma's. In the Netherlands this treatment is still in the experimental stage. An entrance requirement is that the melanoma's above the shoulders are stable. Unfortunately my fathers aren't. Yesterday the doctor told us that my father is excluded from the new treatment. 

My question is, whether in other countries than the Netherland, the treatment can be performed or the new chemo can be optained on the free market. 
We are almost out of hope so if you know anything, please reply, and help us.

With kind regards,

Youri Hasper and family


Carpe Diem

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