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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Jessmoon's picture
Replies 6
Last reply 6/14/2012 - 9:55pm

My husband is 9 months post diagnosis of metastatic melanoma (had small lump on leg that was removed and diagnosed as metastatic melanoma with unknown primary site.  There were no melanoma cells in the epidermis and 3 pathologists confirmed metastatic melanoma).  After being seen at Mayo clinic for a second opinion, we have been doing Leukine injections for nearly 9 months with CT scans every 3 months. His scan today demonstrated a 2mm liver nodule.  Our local oncologist stated this wasn't anything to worry about.  I have two questions:

1.  Has anyone else had liver lesions this small turn out to be metastatic disease?  We are having a repeat scan in 3 months.

2.  He will soon hit the 1 year mark and our local oncologist is recommending just having scans completed annually? I thought he would need to continue at least scans every 6 months for a couple years. What are other oncologists recommending for follow up? 

I find this disease to be so frustrating because nothing is cut and dry-there are no specific studies that indicate how often testing needs to be completed....I'd rather be on the safe side and have scans more often.

Whew, thanks everyone. I am on this site often and appreciate all the info!

 

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NYKaren's picture
Replies 19
Last reply 6/13/2012 - 4:53pm

Hi everyone.

So, as previously posted, had to stop Yervoy after 3 infusions due to pretty serious colitis.  Last infusion was 4/29; still dealing w/colitis.   Have already done radiation and IL-2.  After initial positive signs, was not a responder to either. 

After weaning off steroids 3 weeks ago, still experiencing extreme weakness, no appetite--loss of 20 lbs, even on Prednisone, and still  diarrhea with daily use of either Lomotil or Immodium and still on Endocort EC.

Endo. says my Adrenal gland never woke up after Pred. wean, so she started me on 15 mg./day of Hydrocort.  It is stopping the diarrhea and doesn't seem to have the horrible side-effects the Pred. did.

I don't think the Yervoy did anything...the mets on my face are on the move again, after halting during the Yervoy treatment.  The one under my chin that i was "saving" for "measurable disease" eligibility for Anti-Pd1 trial is bigger.

Spoke w/Dr. Wolchok today (seeing him next Thurs. after chest/abdomen CT).  He feels that the it would be dangerous for me to be in the Anti PD-1 trial. All those hopes--gone.  He thinks that I should have the met under my chin removed.   (I'm continuing to have the new mets frozen & applying Aldera.  Putting Aldera on my face--I might as well be applying Ponds cold cream--it does absolutely nothing.)   I asked him if the big side effect to worry about from PD-1 is pneumonia, what the problem is, he said that A) colitis has been reported, and B) he just won't take the chance.   And besides, all the seats at Sloan for the newest BMX trial version (Anti-PD1 after Ippi) are now filled.  

So, unless something develops on the CT scan next week, it looks like my  next step will be chemo. (Has to be CT, not PET to monitor colitis--there is now some kind of lump that moves when I touch it on my collar-bone--Dr. W. said if it's something, it should show up on CT, and he'll say more about it after he sees me).   I know it was stupid to hang my hat one one treatment, but I did.  I know I'm only IIIc unresectible (hopefully still.)  I'm just worried because the mets are spreading fast again, in my ear and from scalp to below chin.  I know I need to look at those around here at people so much worse off than I, put some gratitutide in my attitude and pull up the bootstraps again.  I just need a little help with that today. 

Please don't let this be one of those days that nobody responds to my post, even if you write to kick my ass, I need you guys.

Thanks,

karen

Don't Stop Believing

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ladylite77's picture
Replies 8
Last reply 6/14/2012 - 3:33pm

I am wanting to know (out of curiosity) if there is a time limit on interferon treatment after diagnosis? I was diagnosed 1 year and 3 mos ago...did surgery, etc. I am stage III metastatic(lymph nodes). I decided not to do interferon after lots of research and specialist input. However, I am now questioning that decision . Is it too late to change my mind? There are many factors causing me to ask this question...I think I will post them in another place.

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skgharst's picture
Replies 3
Last reply 6/12/2012 - 1:42am

My father has stage 4 mastitic melenoma. He started 3 weeks ago w/ Zelboraf, and he had been having mucus/heavy saliva/spit that makes him cough . He thought it may be sinus drainage & doesn't want to think about how it could be the melenoma. He  is wondering if it could be a side effect  of the drug. Has anyone else experienced anything similar?

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Anonymous's picture
Anonymous
Replies 5
Last reply 6/11/2012 - 8:55am
Replies by: Janner, Anonymous, natasha

Population-based 20-year survival among people diagnosed with thin melanomas in Queensland, Australia.

 

Available clinical and histologic data from the Queensland Cancer Registry were obtained for all patients diagnosed with a single thin invasive melanoma from 1982 to 2006 and matched against national death registration data. Melanoma-specific survival estimates to December 31, 2007, were assessed, and subgroup differences in prognosis were determined by fitting multivariate Cox proportional hazard models.

 

RESULTS: Among 26,736 people in the state of Queensland diagnosed with thin melanomas, the 20-year survival was 96%

 

maybe I'm missing something. . but if they obtained data for patients from 1982 to 2006. . . how could they know anything about 20 year survival for anyone diagnosed after 1992, as it would not have even been 20 years yet. If they obtained data for patients from 1982 to 2006. . 2006 was just 6 years ago, how can they tell anything for those people about 20 year survival?

 

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LibbyinVA's picture
Replies 8
Last reply 6/12/2012 - 2:47pm

Just wanted to share my story and some positive, hopeful news. On 6/6/2012 I celebrated 7 years of being NED. I was dx'ed in 2005 with stage IIIb metastatic melanoma. Treatment included several surgeries and a vaccine clinical trial in 2006 under Dr Anna Pavlick at NYU. Feeling very lucky to be alive but, missing too many friends made here on this board who were not as fortunate. I hope and pray daily for a cure for this awful disease. Never give up hope and believe in miracles...I am one!

Wishing everyone the best!

LibbyinVA

I have melanoma but melanoma does not have me!

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Anonymous's picture
Replies 10
Last reply 6/12/2012 - 6:54am
Replies by: MeNDave, Gene_S, Tim--MRF, Janner, Anonymous, Linny, kylez

I am so angry.  As a typical person living in US, I've been very good about protecting my skin from sunburns and not using tanning beds.  But I was dx with melanoma.  I feel it is misleading the way that all the info/public info is about sunblock.  Is that so they make money?  The info should be about new moles and moles that change.  It really doesn't matter if you use sunblock.  I did not think it would happen to me because I followed all the rules.  The melanoma campaign needs to change.  It can happen to anyone, not just tanning bed users and people who bake themselves to a crispy brown.  The information gives false sense of security to those of us who didn't abuse our skin.  It makes us think it can't happen to us.  I guess sort of like lung cancer can happen to people who don't smoke.  But it does happen.  I'm so angry that I ignored something because I wasn't a red head who burns easily and goes to a tanning bed.

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Anonymous's picture
Anonymous
Replies 3
Last reply 1/23/2013 - 9:49pm
Replies by: mclaus23

Has anyone heard from Lisa. She was scheduled for brain surgery a few weeks ago. I am concerned because she usually posts often.

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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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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:

http://www.melanoma.org/get-involved/post-asco-teleconference 

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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rbruce's picture
Replies 28
Last reply 4/14/2013 - 9:45pm

After over a year of nothing but bad news and constant tumor progression, I just met with my Doctor at UCSF who was excited to tell me that I have had over a 30% tumor reduction from the ANTI-PD1 trial I am on.  All of the results out of ASCO last weekend in Chicago about ANTI-PD1 have been very promising and have shown that responders continue to respond.  I am so grateful for the groundbreaking research that is bringing these new immunotherapies to the forefront. I am so thankful for my friends and family that have supported me.  I am eternally thankful to my love, my partner, Lisa who, without her constant love and positive encouragement, I would be lost.  

 
Today is a happy, happy day.  I thank God he continues to give me more time to live each day to the fullest.  I ask for God's blessings in your lives.
 
With love and gratitude,
 
Robert

The circumstances of our lives have as much power as we choose to give them. David McNally

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Erinmay22's picture
Replies 9
Last reply 6/10/2012 - 11:18pm

Ok so I know this topic has been brought up a lot!  I'm about 10 days in to taking it.  I've noticed horrible joint pain (waking me up at night).  As long as I remember to take some anti-inflammatory medicine and get up and move around it seems manageable.  

I am also starting to notice a rash - doesn't seem to really itch yet but I suppose it's only a matter of time.  I'll call my med onc/derm tomorrow to find out what I should do but curious as to what folks did to help manage a rash.  

Thanks!

Erin

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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CORRECTION:

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 cpmcchrc@sutterhealth.org.

More information can be found at www.chrcsf.org.

Healthy Regards,

-Community Health Resource Center

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

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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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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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