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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mark1101's picture
Replies 7
Last reply 10/5/2013 - 3:42pm

Took my 1st Ipi maintenance treatment almost 6 weeks ago.  Am tapering off prednisone slowly (3 mg daily as of today).  About a week ago I started to get outbreaks of what I would descirbe as hives in colonies located in various spots over my body.  I am using Clobetasol 2x daily on the sites and taking benedryl regularly.  Would like not to go back up on prednisone if I can avoid it.  Anyone else experience similar?  What helped you with the itching sensation most?  Any suggestions would be greatly appreciated.

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Anonymous's picture
Anonymous
Replies 8
Last reply 10/3/2013 - 1:47pm
Replies by: Anonymous, Cindy VT, Sherron, Janner, catmandu, Another Julie

Melanoma started on ear... level II stage 1A...after 4 surgeries, finally got clear margins... however..ive had a swollen node on that side of my neck ever since, its about the size of a kidney bean, rock hard, no pain associated with it.... Ive been to the doc, (my primary doc, ive never seen a melanoma specialist through any of this..) he assured me it was my carotid artery, nothing to worry about...I disagree... I do feel the pulse of the carotid artery next to/near it, but I think it's just not extremely big and is being hidden..It's definitely there though.. NOW, recently, its still there, and prominent, hasnt gone down, (and no, i havent been playing with it).... but Im experiencing other worrisome symptoms as well... My head has been foggy, complete lack of concentration, I forget what Im doing momentarily (making coffee, I put sugar in the basket instead of grounds, etc) and more than anything, Ive been falling (particularly UP the stairs, numerous times, any stairs) and ive been running into everything... and sometimes ill just be standing there, and start to walk and feel like im going to fall over...My personality has also been changing, wild mood swings, im still pretty happy overall, but sometimes i find myself snapping momentarily, over nothing...And also, SEVERE headaches. EVERY day... Right behind my eyes, ive never had a problem with headaches before, just the occasional one here or there...Sooo....my first thought: Brain mets.. :(

Thoughts? 

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SBeattie's picture
Replies 2
Last reply 10/12/2013 - 4:43pm
Replies by: frankMill, BrianP

sorry I don't have porfile yet...9/2011...stage 2a scalp..WLE. negative SNB...neg scane...2/2012 local recurrence, WLE, again, neg. SNB (drained to other side)...6 weeks radiation...scans neg until 8/2013...one 2.2 cm spot lithgts up upper right lung...nothing else, no nodes...(in the scheme of things, I know I was//am fortunate)...had successful VATS...brain MRI was neg at the time.; LDH slightly elevated.  Very reputable mel specialist essentially said there isn't any sanctioned (i.e. insurance won't cover adjuvant therapy with say, ipi)...therapy...he also told me (which I already knew!) there was 80 - 90% chance it'll show up again...he also said I was in a small minority with this scenario...even tho I've read of many who have one met show up...resected...NED until the next time!   so, in this situation, one has to wait for it to show up again before treatment offered? he is going to be heading up two ipi-pd-1 trials soon...so that's there, and perhaps if/when it shows up (surely those cells are searching for a comfy place to raise a family...) the pd-1 drugs will be approved...but geez...meanwhile, scans every 2 months...however, I thought I'd read where there were trials with ipi for stage IV NED...but, if so, and I got into one, then I wouldn't qualifyy for ipi-pd--1 trail without a long wash-out period...just wanted to know if I've got my facts right...if indeed I have to watch and wait...in light of all the warriors whose descriptions I read (2-3 times per day on this site) I don't for a second discount the relative 'best' of the worst places I could be at this point...you all are beyond inspirational and helpful...thanks for any feedback...

SBeattie

Sally

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/16/2013 - 8:31am
Replies by: nightengale, Mazz

Hello my sister is currently taking Zelboraf and thanks God for the past 4 months she has been Ned. I have read a lot of success stories of patients taking Anti Pd1 and and lately I read that if you pass the three year mark as Ned doctors are confident that maybe one is clinically cured, Since in our country is very difficult to get into a trial I am eagerly waiting and praying  for Anti PD1 to be FDA approved. Has anyone got any approval dates ?

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Hstevens0072's picture
Replies 3
Last reply 10/2/2013 - 8:59am
Replies by: Tina D, JoshF, POW

I've been on the Merck 3475 trial for four infusions, scans were yesterday, going back to Dana Farber for results tomorrow. My anxiety level is thru the roof :/. Went to work today, it's budget season, I'm a little afraid of what I may have done. I was so distracted thinking about tomorrow. Oh well, I can always fix the budget. I know so many of you have been in this same place....... Waiting for results. I feel better just getting it off my chest. Slightly :)
Fingers crossed,
Holly

"The key is don't go to the funeral until the day of the funeral" ~ Valerie Harper

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Original Article

Subject Category: Oligonucleotide Therapy

Molecular Therapy advance online publication 18 June 2013; doi: 10.1038/mt.2013.135

Intravenous Delivery of siRNA Targeting CD47 Effectively Inhibits Melanoma Tumor Growth and Lung Metastasis

Yuhua Wang1, Zhenghong Xu1, Shutao Guo1, Lu Zhang1, Arati Sharma2,3,4,5, Gavin P Robertson2,3,4,5 and Leaf Huang1

  1. 1Division of Molecular Pharmaceutics and Center for Nanotechnology in Drug Delivery, Eshelman School of Pharmacy, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA
  2. 2Department of Pharmacology, College of Medicine, Pennsylvania State University, Hershey, Pennsylvania, USA
  3. 3Department of Pathology, College of Medicine, Pennsylvania State University, Hershey, Pennsylvania, USA
  4. 4Department of Dermatology, College of Medicine, Pennsylvania State University, Hershey, Pennsylvania, USA
  5. 5Department of Surgery, College of Medicine, Pennsylvania State University, Hershey, Pennsylvania, USA

Correspondence: Yuhua Wang, Division of Molecular Pharmaceutics, Eshelman School of Pharmacy, 1319 Kerr Hall, Chapel Hill, North Carolina 27599, USA. E-mail: alwang@email.unc.edu

The first two authors contributed equally to this work.

Received 3 December 2012; Accepted 21 May 2013
Advance online publication 18 June 2013

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Abstract

CD47 is a “self marker” that is usually overexpressed on the surface of cancer cells to enable them to escape immunosurveillance. Recognition of CD47 by its receptor, signal regulatory protein α (SIRPα), which is expressed in the macrophages, inhibits phagocytic destruction of cancer cells by the macrophages. In this study, we have first shown that clinical isolates of human melanoma significantly upregulate CD47, possibly as a mechanism to defend themselves against the macrophages. We then exploited RNA interference (RNAi) technology to test the hypothesis that knocking down CD47 in the tumor cells will render them targets for macrophage destruction; hence, creating a novel anti-cancer therapy. Anti-CD47 siRNA was encapsulated in a liposome-protamine-hyaluronic acid (LPH) nanoparticle (NP) formulation to address the challenge of targeted delivery of siRNA-based therapeutics in vivo. Efficient silencing of CD47 in tumor tissues with systemic administration of LPH(CD47) also significantly inhibited the growth of melanoma tumors. In a lung metastasis model, LPH(CD47) efficiently inhibited lung metastasis to about 27% of the untreated control. Moreover, no hematopoietic toxicity was observed in the animals that received multiple doses of LPH(CD47). Our findings indicate CD47 as a potential prognostic marker for melanoma development as well as a target for therapeutic intervention with RNAi-based nanomedicines.

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Tamils's picture
Replies 7
Last reply 10/3/2013 - 12:56pm

My father lost his fight on September 15.  He was diagnosed last November with stage IV melanoma in the skull, unknown primary (eventually thought to be ocular, though it was never 100% confirmed), and was surgically resected to NED status.  Unfortunately this didn't last long, and in March his scans showed widespread tumors in liver and bones.  His oncologist had no suggestions but to go home and give up, or perhaps to try Temodar, although she admitted it wouldn't work.  Thanks to the information I got from all of you and your experiences, we insisted on a course of ipi, and consulted a melanoma specialist and entered the Merck anti-PD1 trial at UCSF.  He got through three infusions before his liver gave out and they kicked him out of the trial.  Our last visit to UCSF was August 27, and we had no idea he had only two and a half weeks left.  He went from completely independent living to being unable to shift position in bed in just a few weeks, but he never had more pain than a few Tylenol could cure, which was a real blessing.

This message board gave me so much information and support while I was trying to figure out the best course of treatment for him.  We had hope and Plans A, B, and C right up to the end of August.  I know my dad was very grateful, and I have asked friends to donate to MRF in his memory, but I really wanted to thank the incredibly giving community here-- so, thank you.  

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I understand what the general terms mean by themselves, but not all put together. Any thoughts?

 

#1: Severely Atypical Compound Melanocytic Nevus --- 1.3 cm diameter, 0.2 cm thickness,
"There is an asymmetrical proliferation of severaly atypical melanocytes in nests within the epidermis and dermis. A very rare melanocyte is slighty above the dermal/epidermal junction. In some areas, there is concentric and lamellar fibroplasia within the papillary dermis. Other areas have a patchy lymphocytic infiltrate. The pan melanoma cocktail immunoperoxidase stains show the melanocytes to be present in the lower levels of the epidermis, controls appropriate."

 

#2: Severely Atypical Acral Compound Melanocytic Nevus ---- 0.6 cm diamter, 0.1 thickness,
Same as above ---- "There is an asymmetrical proliferation of severaly atypical melanocytes in nests within the epidermis and dermis. A very rare melanocyte is slighty above the dermal/epidermal junction. In some areas, there is concentric and lamellar fibroplasia within the papillary dermis. Other areas have a patchy lymphocytic infiltrate. The pan melanoma cocktail immunoperoxidase stains show the melanocytes to be present in the lower levels of the epidermis, controls appropriate."

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Anonymous's picture
Anonymous
Replies 5
Last reply 10/2/2013 - 1:45pm
Replies by: Janner, Anonymous, Tina D, Charlie S, kpcollins31

Six years ago I was diagnosed with in situ, had a wide excision and promptly went on with my life. I had regular skin check and biopsies of suspicious moles. Today I got the call: .7 mm, stage 1a. I'm waiting on an appointment to discuss lymph node biopsy; I'm leaning towards it. Of course, wide excision is on the horizon as well.

I know enough to know that this was caught early and things will be fine. I will go on with my life just like I did before. But right now, honestly, I'm kinda of freaking out. I'm 42 years old. Help. 

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Michelem's picture
Replies 11
Last reply 10/2/2013 - 3:29pm

Sorry for such a basic question, but we are completely new to all this. My husband has a melanoma on the sole of his foot and metastases in the sentinel lymph nodes. We've just learned that his PET scan showed no further disease - yay! Tomorrow he will have an MRI. Surgery is scheduled in three weeks.

We have been referred to a surgical oncologist, but not a medical oncologist. I'm told we should see a melanoma specialist, but I'm not having much luck finding one in Sacramento. I'm told there is a very good melanoma clinic at UCSF, but I'm not sure how we will go about getting access to that - or if it is necessary in our case?

Our surgeon is currently travelling, so we won't actually see him until the day of surgery. I'm assuming that my husband is Stage III, based on what I've read, but as I understand it we won't know that for sure until surgery when they can see how thick the melanoma actually is.

Thanks so much for thoughts and help with these very basic questions! 

MicheleM

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Nikita's picture
Replies 8
Last reply 10/2/2013 - 10:13pm
Replies by: POW, NYKaren, Nikita, aldakota22

Hi everyone,

My mum was on Zelboraf since June 2013. Recently, she began to feel pains in here left shoulder and left side of neck, and generally all around left side, thus she had to begin ibuprofen. Some days ago we also found a bump on her right shoulder.

As mum is not able to move a lot, my dad went to our oncologist for advice. The oncologist said to stop with Zelboraf for now and to begin loumustine. He took a pause till Thursday to advice with the chief oncologist. So the day after tomorrow my dad will go to discuss with them what to do next with our treatment. Right now my mum has stopped Zelboraf for 2 days.

I would like any advice from you. If it is sensible to go with loumustine ? Does someone has expirience with it ? Should we maybe think about new Tafinlar or it is the same as Zelboraf ?

Also, doctor justified his advice about Loumustine, saying that there are braf-mutated cells and non-mutated. Zelboraf was against mutated ones. Loumustine will be against ordinary ones. What can anyone say about this, is it sensible ?

Thank you for answers in advance. Sorry for my English, haven't been speaking it for years.

Nikita

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Replies by: catmandu

I have had a level 4 desmoplastic melanoma on my face, a superficial spreading in situ melanoma on my leg and now a nodular melanoma on my back.  Wondering why I continue to be surprised when I see that 'look' from a doctor.  

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GAngel's picture
Replies 14
Last reply 10/6/2013 - 6:12am

Hello all! I am so happy to share the good news regarding the results of my husband's most recent PET/CT scan which revealed that the multiple (15+) hepatic lesions were not well seen and his left lymph node is significantly decreased in size! You may recall, two months ago, Rudy switched from Zelboraf (which was still working and had reduced tumors in liver from 15+ to 4) to the Dabrafenib/Mekinist combo in hopes of less side effects and an overall better result.  He has been feeling so much better since he started treatment with combo and now with confirmation that it is working we are certain that it was a good choice to switch treatment. Next step, when needed, will be a PD1 trial. His oncologist states these trials begin at the Chao Family Comprehensive Cancer Center, University of California - Irvine, in the spring of 2014. 

I continue to pray for all on this board for strength, peace of mind, and for the comfort of Christ.  Never forget that you are loved!

Gina

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."- Philippians 4:6

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Judy D's picture
Replies 8
Last reply 11/7/2013 - 3:00pm

Anyone not on any treatment plan having been diagnosed stage IV? The reason I'm asking is because I'm stage IV with NED for the last 6 months. I was on Zelboraff but my Dr took me off because of the extreme photosensitive issues I was having. I am going to begin new drug soon but wondering if we will ever be free of treatment
I am so thankful and blessed to be in the situation I'm in now. I just believe we can never give up

Phillipeans 4:13 I, we, you can do all things through Christ who strengthens me.

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DeniseK's picture
Replies 19
Last reply 10/8/2013 - 10:19am
Replies by: Janner, Anonymous, POW, smurph226, DeniseK, JoshF

Hey Everyone, 

I need help for my cousin.  She is not a blood cousin but she was just diagnosed with Melanoma today.  She had a biopsy of a mole behind her knee on the back side of her leg removed and it came back as melanoma.  I guess it was a  punch biopsy but she said it wasn't very deep and the derm said they caught it early.  She is asking me what questions to ask and I don't know.  It's been so long for me since my initial diagnosis I wouldn't know how to read a path report or know what to ask anymore.  I do know she will have to have a WLE but do they do a SNLB too automatically?  I told her to ask her derm to refer her to a melanoma specialist not just an oncologist.  The derm is talking to the melanoma surgeon and is getting back with her in the morning.  I am very concerned for her and she is scared to death.  She lost her daughter Amber at age 24 in 2001 to melanoma.  I told her about this website so maybe she will come for support and help with her questions.  I'm trying to find out what the depth was.  

Any help as far as what she should be doing is appreciated.  

Thanks everyone for your help

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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