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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Anonymous's picture
Replies 6
Last reply 10/5/2013 - 8:16am
Replies by: Mat, Anonymous, ljhncj12345

Could bone metastases present as a mechanical pain: movement = pain, no movement = no pain?
I read that the pain is usually felt mostly during rest or at night. Coulf someone describe the symptoms of bone metastases, please?

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Anonymous's picture
Replies 1
Last reply 10/4/2013 - 10:08am
Replies by: NYKaren

Those looking for a PD1 trial that you are guaranteed the drug, here is a trial you might want to consider:

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Anonymous's picture
Replies 2
Last reply 10/4/2013 - 8:02am
Replies by: Rocco, Anonymous

I just happened to come across this article online this evening


Pooled Analysis Reinforces Long-Term Survival Benefit With Ipilimumab

Andrew J. Roth

Published Online: Wednesday, October 2, 2013

- See more at: 

Results from a pooled analysis of data from 12 studies has demonstrated a long-term survival benefit that extends through at least 10 years for patients with advanced melanoma treated with ipilimumab (Yervoy). The results were announced by the drug’s manufacturer Bristol-Myers Squibb on September 27 and were presented at the 2013 European Cancer Congress on September 28. This study, which included 2 phase III trials, 8 phase II trials, and 2 retrospective trials, represents the largest OS analysis to date for patients with advanced or unresectable metastatic melanoma treated with ipilimumab. The analysis also included both patients who were previously treated (n=1,257) and previously untreated (n=604).“This pooled analysis is encouraging, particularly when considering that metastatic melanoma is one of the most aggressive forms of cancer and historically, average survival was just six to nine months,” said F. Stephen Hodi, MD, Department of Medicine, Harvard Medical School, Dana-Farber Cancer Institute, in a statement. In the 1,861 patients treated with ipilimumab, median overall survival (OS) was 11.4 months (95% CI: 10.7–12.1). Researchers noted a distinct plateau in OS at year 3 that extended through year 10, independent of line of therapy, ipilimumab dose, or maintenance therapy. The 3-year OS rates were 22%, in the entire study population, 26% for treatment-naïve patients, and 20% for previously treated patients. The authors of the study wrote that these OS data should be considered as a benchmark for future melanoma therapies, as they represent a large benefit in a difficult-to-treat disease.“This pooled analysis reinforces the long-term survival data seen in the individual studies and provides additional insight into the overall survival of metastatic melanoma patients treated with Yervoy,” said Brian Daniels, senior vice president, Global Development and Medical Affairs, Bristol-Myers Squibb Company, in a statement. “The durability and consistency of long-term survival observed in this analysis is encouraging as we continue to advance the research and development of our immuno-oncology portfolio.”In each of the trials in the analysis, patients received ipilimumab at different doses, with the majority of patients receiving 3 mg/kg (n=965) or 10 mg/kg (n=706) every 3 or 4 weeks. Most of the studies provided the option for eligible patients to receive ipilimumab retreatment or ipilimumab maintenance therapy. Safety data were not included in the analysis. Adverse events attributed to ipilimumab, which are typically mechanism (immune)-based, were managed in individual trials with protocol-specific guidelines, including dose interruption or discontinuation and the administration of systemic corticosteroids. The FDA approved ipilimumab 3 mg/kg monotherapy in 2011 for patients with unresectable or metastatic melanoma. Ipilimumab is now approved in more than 40 countries.

Schadendorf D, Hodi FS, Robert C, et al. Pooled analysis of long-term survival data from phase II and phase III trials of ipilimumab in metastatic or locally advanced, unresectable melanoma. Presented at: European Cancer Congress 2013 (ECCO-ESMO-ESTRO); September 27-October 1, 2013; Amsterdam, The Netherlands. Abstract 24. - See more at: 

Luke 1:37

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Aussielyn's picture
Replies 0

Just wanted to thank Josh & John for their replies to my post on 27/9 . Sorry it has taken me so long but I had trouble logging in & have only just rectified the problem.
In the mean time after resuming trametinib for 2 days & then just 3 doses of the combo after that, I again ended up with fever mouth ulcers & terrible nerve like pain up my legs & in my feet . I was walking like a sick 90 year old! Once again!!
So I am off drugs again for another week when I'll again resume on 5 days of trametenib before adding reduced dose of dabrafenib .
Docs not sure if it's the trametenib or the dabrafenib that's causing me grief , however thinks it's the dabrafenib. It's trial & error to get the right dose my body can tolerate. Dr thinks we started back too soon the last time! The thing is no one knows much about this medication where I live - that's why I'm so interested to hear of other peoples experiences. I really want the drugs to work as I'm not sure what alternatives will be available. I'm wondering if anyone has had similar side effects - & a positive outcome. I'm due for a scan in a months time so really need to get the medication continuing to work.
Thanks for reading & do hope your politicians get some resolution to their differences.
Hope everyone is doing well & keeping the fighting spirit alive. I know it's not easy sometimes when you're doing it really tough but I guess we all have to keep positive.

Take care,

Heal with every inhalation and let go of cancer with every exhalation.

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JoshF's picture
Replies 8
Last reply 10/3/2013 - 10:59pm

HI All-

So my surgical oncologist from Northwestern Memorial Hosp called me this morning with results of CT Scan on chest that was ordered due to hyper metabolic activity in mid lobe of right lung found on PET scan. He cancelled surgery as wants a biopsy of nodule in lung which measured 9mm. He said he would be remiss to do surgery as I would immeadiately start some type of systemic treatment if biopsy comes back positive for mel. I got impression that's what he is thinking. He said you could have some type of infection which made PET light up and so on. That being said I've had numerous CT Scans which show nothing with the latest being from March. So in 6 months something grew to 9mm in my lung. I did smoke for 20+ years but I'm a realist. I'd put money on this being MM and gladly lose it if biopsy comes back neg.

SO my confusion here is I always thought surgery was best way to treat melanoma then followed with treatment. Something I'm missing? Maybe I should stop trying to understand this awful disease... Thanks for listening and to the many that have replied...I feel like this is best place to go for information and advice...



Let's work for better treatments....for a cure!!!!

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Anonymous's picture
Replies 2
Last reply 10/3/2013 - 9:02pm
Replies by: Anonymous, Janner

HI! I was wondering if anyone could help me understand part of a pathology report from a mole that I had removed.

I have several atypical moles. A few years ago I had a moderately atypical mole removed that was followed by a WLE. So I was not surprise  last week that the mole I had biopsied was moderately atypical.

The biopsy was an excisional biopsy. The nurse said that it was completely removed so I did not need a WLE. I was surprised. Is this normal?

When I looked at the copy of the report it stated that " the lesion is not identified at the edges of the specimen." Does this mean that the margins are clear?

I have recently moved to a new city and this is a new dermatologist for me. I just tend to get really nervous! Any information I would greatly appreciate!


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Anonymous's picture
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 first thought: Brain mets.. :(


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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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As a result of the government shutdown, NIH is no longer accepting new patients into existing clinical trials. Have you or someone you know been impacted by this? Have you been turned down and/or unable to enroll in a trial? If so, email The MRF feels media coverage around the shutdown needs to address the negative impact on melanoma patients, and your story is needed.



MRF's Communications Manager

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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.


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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! 


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Anonymous's picture
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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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,

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

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Eileen L's picture
Replies 5
Last reply 10/2/2013 - 2:50am

Hi to all. Haven't been on this board in many months, but for some reason have been thinking about the incredible support I have received from people here over my six year journey.

I am a six year, Stage IV survivor currently on the Roche BRAF/MEK Phase Ib trial. Have been on the trial for about 15 months now with a great response. Have no FDG activity on PET and the one problematic tumor, which is on my right adrenal gland, went from 6 cm to 1.8cm. It is still hanging in there, hasn't changed in size over the course of multiple scans. I have never had the pleasure of NED status since my Stage IV status and have grown accepting of living with tumor in my body if it is well controlled with treatment.

Over the past six months  have seen side effects of the therapy diminish greatly after the common battles with joint pains, mouth sores, drug rashes, fatigue, etc. Lingering side effects include hypersensitiviy to the sun, which I am managing fairly well. I even have a head to toe sun protective outfit to go to the beach in if I desire to do so. Quite fetching! Also have bouts of fatique and occasional joint pains. Mangeable given that I no longer work and have lots of flexibility in my schedule.

That's about it. Glad to have this community available and thankful to all of you who are dedicated "posters!"

Eileen L

Stage IV survivor


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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:

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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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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