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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JoshF's picture
Replies 15
Last reply 1/1/2014 - 9:10pm

I got the call from surgical oncologist on lung nodule today. It was positive for melanoma.He is postponing surgery indefinitely and called medical oncologist. So, I have an appointment with medical oncologist this afternoon. Not sure what this fight is going to look like but whatever it is I'm ready. What are my options? Not sure if lung met is braf positive or negative yet....though reoccurrence on cheek was negative. Advice on any questions I should you know my brain is scrambled.



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

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brooke's picture
Replies 3
Last reply 10/5/2013 - 10:01am
Replies by: brooke, POW, Anonymous

Hello again!

I am very relieved to be on the forum with my husband's revised diagnosis from Stage III b to Stage I a.

I am so thankful for all the help and support I received when I thought we were dealing with a more advanced stage of the disease. My heart goes out to all those suffering from this disease. 

Since my husband's misdiagnosis, I feel we have been written off by the doctors at Kaiser Permanente.

I understand the need for an oncologist may no longer be necessary, but I know proper follow up is.

If it wasn't for my medical background and this site, I may not have know what proper follow up entails.

I want to confirm with those of you who know more and care more than the docs at Kaiser that I am doing the right thing.

I have him scheduled every 3 months for a dermatoogy visit. I assume they'll do lymph node checks at that time.

On my husband's PET/CT scan, a few small nodules showed up in his lungs. At the time it concerned them a bit, but since the new diagnosis, they've said nothing about it.

I emailed his PCP who checked with oncology who said yes, follow up with a chest CT in 6 months. Hmm.. glad I asked! I don't think anyone would have told us.

Also on his PET scan, an area behind his tongue lit up. An ENT did a scope an said it was inflammation. No info on follow up.

After talking with his PCP, he said yes, they want follow up in 3 months. Thanks.

I certainly am aware that after reading everyone elses stories that Stage I is not nearly as frightening and hopefully even curable with the wide excision. But I still worry. I now have real trust issues with these docs and feel if I don't take action, no one will!

I would love to have him see a melanoma specialist, but it is $600 out of pocket. We will certainly do that if necessary. 

I guess I'm looking for a little guidance!

Thank you all again!


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Replies by: UrsulaZ, Maureen038, Anonymous

My husband had his second set of scans at NIH for the ACT trial. He is considered stable, but two of his lung nodules have grown about 4 mm. The lymph nodes in his arm have shrunk. The doctors feel the two lymph nodes in his arm may not be melanoma. It's wonderful that there are no new nodules and it is basically in his lungs, but it's also like getting on the roller coaster again. He is now enrolled in the phase 1 Yervoy /nivolumbab and hopefully today we will find out when he will actually begin the drugs. All of the doctors feel this is the best treatment to do next. I'm just wondering if anyone has done both of these trials or just have an opinion. Thanks for any help!

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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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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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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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Tina D's picture
Replies 6
Last reply 10/9/2013 - 10:02am
Replies by: Tina D, aldakota22, BrianP

Hi guys,

I had my fouth dose of Mercks anti Pd1 on Monday. Feeling pretty well overall. I will have scans with my next infusion appt in 3 weeks. Will update then!


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Anonymous's picture
Replies 4
Last reply 10/5/2013 - 8:35pm
Replies by: Cindy VT, Anonymous, JerryfromFauq, Tina D

Without the political statements or opinions of Democrats vs Republicans, etc - can someone please provide an overview on what is happening at NIH specifically due to the shutdown??

Luke 1:37

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Hstevens0072's picture
Replies 8
Last reply 10/7/2013 - 11:37am
Replies by: Janet Lee, Hstevens0072, Tina D, Anonymous, NYKaren

First set of scan results received today - and it's working! Many small tumors are no longer showing up on the CT scan and the large tumor in my right lung is 60% smaller. All this after four infusions of Anti PD 1. I hope this boosts spirits and gives hope to others.
I am so grateful to God, and big pharma.

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

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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 10/3/2013 - 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 4
Last reply 10/5/2013 - 5:42pm


I have not seen a post for a long time from you. I hope you are doing well.

Does anyone know how Wayne is doing?


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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
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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