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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claudia-uk's picture
Replies 7
Last reply 4/6/2011 - 7:08pm

My husband received his first infusion of Ipilimumab 2 weeks ago. He was tired before, but since then he sleeps most of the time. About every 3 hours (during the day) he has to sleep for 1-2 hours. Then he goes to bed at about 9pm and can still sleep all night.

And he does barely eat anything.

Has anyone else on Ipilimumab experienced the same? Will it get better eventually?

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Jeff's Mom's picture
Replies 14
Last reply 4/3/2011 - 9:11pm

My son was diagnosed with melanoma (stage 3C) in February, 2011 and has been recuperating from 2 surgeries during this past month of March (you can read my profile about his experience).  He has no unresected tumors so does not qualify for any vaccine clinical trials and does not have the MAGE 3 mutation.  And since the FDA has approved IPI, he doesn't qualify because he is Stage 3.  We have searched for any possible trials with an interferon and IPI arm (there is one at the University of Pittsburg but it is not recruiting yet) and have come up with nothing.  So, his options are somewhat limited, unfortunately.  He is "under the gun" so to speak and only has a few days to decide.  His oncologist does not feel biochem is the way to go since Jeff is at Stage 3 and wants to reserve that option if Jeff ever goes to Stage IV.  We have had many second opinions and many of the main melanoma centers say the same thing:  wait and see.   Jeff is not willing to do that - he wants to get rid of any lingering cells that may be floating around in his blood or  in the lymph system.  He is leaning towards Interferon because of its track record in delaying recurrence.  My questions to those of you who did Interferon:  did any of you have a complete response? Any of you with no recurrence and NED for an extended period of time?  Did you complete the first month of high dose infusion and then make it through the year with self-injections?  Did any of you just complete a one month high dose infusion regime?  If so, did it work??  

Are any of you at Stage 3 and on IPI???  If so, how did you get it??

For those of you who did Interferon and relapsed...what were your next steps?  How long did it take to recur?  Did you follow a set protocol or timeline?   I know it makes a difference where the mets shows up, but did you have a set plan for "just in case"?   IL-2, PLX4032, IPI, chemo/biochem?   I don't want to go there, but I guess I need to know what the next steps will be just in case (I really hate even having to type those words).  This totally sucks - I hate that my son has to suffer and go through all of this.  It's not fair!!  I HATE IT!! 

Thanks in advance to those of you willing to respond to a very worried and confused mom.

Jeff's MOM

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sharmon's picture
Replies 1
Last reply 4/1/2011 - 6:00pm

We just got the news from MDA that the tumors in his lungs are growing.  He has been on MEK for 13 months.  His regular Doctor was not available and we will be able to talk to him on Monday.  We are off the trial for now or at least until we can find the exact amount of increase, there seems to be room for interpertation.  But for now my question is WHAT NEXT?.  He is braf negative and Hla-2 negative.  NIH has a Til trial for HLA-2 negative Melanoma patients.  He has done luekine 2008,  Ipi with carbo and taxol 2009,  biochemo in jan of 2010, and MEK for the last 13 months.  Stil no surgery for melaona in the lungs.  Any Ideas or thoughts would help right now.  Thanks to all.

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We just got the news from MDA that the tumors in his lungs are growing.  He has been on MEK for 13 months.  His regular Doctor was not available and we will be able to talk to him on Monday.  We are off the trial for now or at least until we can find the exact amount of increase, there seems to be room for interpertation.  But for now my question is WHAT NEXT?.  He is braf negative and Hla-2 negative.  NIH has a Til trial for HLA-2 negative Melanoma patients.  He has done luekine 2008,  Ipi with carbo and taxol 2009,  biochemo in jan of 2010, and MEK for the last 13 months.  Stil no surgery for melaona in the lungs.  Any Ideas or thoughts would help right now.  Thanks to all.

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JerryfromFauq's picture
Replies 2
Last reply 4/1/2011 - 11:23pm



Pissed at UNITED HEALTH CARE-MDIPA. 2/28/2011 They sent a 15 1/2 day supply of Gleevec that has held me staple for 2 years. Playing games since then, but sent me no more medicine. Tells me 1 thing. Tells mandatory specialty pharmacy a different story. This is in the government run Federal Employee Health Program.
 FedWeek today reported that OPM has requested that theFederal run insurance plans reduce their drug expenses for 2012.Problemsgetting drugs from UHC.  Dr has been working on problem renewing prescription for 3  weeks.


I'm me, not a statistic. Praying to not be one for years yet.

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ADSCLT's picture
Replies 5
Last reply 3/31/2011 - 10:38pm
Replies by: ADSCLT, lhaley, MichaelFL

Hi Everyone,


I've been reading post often since my father was diagnosed in November, 2010.  We recently found out he has 6 brain mets, most are small but one is larger located on his brain stem.  It caused his eyes to cross and his vision is very blurred.  His last WBR is tomorrow.  We also see the Chemo doctor for the first time tomorrow to find out our options.  I have no idea what to ask.  I've researched RG7204, IPI, and other treatments.  I don't know what my dad will qualify to take.  Any advise will be appreciated.  We are in Charlotte, NC.  Thank you.

Give it all to God.

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Hello, I'm new here. Was instructed by someone on another message board to come here, post my report, and ask for "Regs or Janner".  Thanks in advance to all for your thoughts and advice, it is appreciated.

I had a small mole removed recently, after the pathology report came back the dermatologist said we needed to do further excision.  This is the first mole I've had removed with any suspicious findings.  Basically, the findings are equivocal, they say that they cannot exclude melanoma and report recommends conservative re-excision. This has already been scheduled, basically I need to know what questions to ask.

DX: Lentiginous compound nevus dysplastic type with severe dysplasia, extending to all the margins with postinflammatory pigmentary alteration. Conservative re-excision is advised.  Comment: Pagetoid extension of melanocytes are seen. Special stains are pending.

Tissue measured 0.3x0.3cm in greatest dimension. Entire specimen submitted in one cassette.

Dermoepidermal junction contains a primarily nested melanocytic proliferation. Within the superficial dermis, discrete nests of melanocytes with slightly smaller nuclei are present. lateral to the dermal portion of the lesion moderately atypical melanocytes proliferate which bridge and fuse adjacent rete and are associated with a superficial fibrosis of the papillary dermis.  There is a proflieration of solitary melanocytes at the dermal-epidermal junction. In the superficial dermis, melanophages and scattered mononuclear cells surround capillaries.

Immunohistochemical studies reveal with anti-melan-A stain, a diffuse melanocytic hyperplasia with focal pagetoid extension of melanocytes.

Comment: it is difficult to exclude an early, evolving malignant melanoma in situ, superficial spreading type, arising in association with compound nevus dysplastic type with severe dysplasia, extending to all the margins.


The pathology analysis was done by dermatopathologists, reviewed by a fellow as well as intradepartmental review session (all from a teaching hospital in NYC). All agreed on report.

My question is -- what stands out for you? what should I be asking my doctor? In the NYC area who should I ask for a 2nd opinion from?  what will they be able to tell from this larger excision, if anything? if they still can't tell if it's melanoma, then what?  Also, I'm in my mid-late 30s, female, if that's of use to know.

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Lisa13's picture
Replies 4
Last reply 4/3/2011 - 7:51pm
Replies by: AndyD, RMcLegal, KevinM

I had a very deep primary  (nodular) with 1 node positive (macro). In researching treatment options, biochem along with Interferon has been the only options I'm faced with (other than clinical trials). That being said, for those of you who have done biochem - what are your experiences? Is this chemo and adjuvent therapy together?  Is it successful?

I'm in a race to get going on treatment so that I can try and stay ahead of this beast. Before I meet with my oncologist I wanted to have some info ahead of time.

Thank you,


Many impossible things have been accomplished for those who refuse to quit

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PeterO's picture
Replies 5
Last reply 3/31/2011 - 6:36pm
Replies by: LynnLuc, Anonymous, Janis B., jim Breitfeller

It’s interesting to consider the paradigm shift occurring in therapy for MM. The FDA approval of ipi raises many questions in my mind (as stage IV m1a), so perhaps others will offer their thoughts on them:

  1. Is ipi likely to replace IL-2 as first-line therapy for most patients? It seems to be less toxic and offers a higher rate of durable remission.  Is that correct? It’s my understanding that IL-2 never reached phase III trials and thus its impact on OS has never been quantified. True? So is it only anecdotal evidence that suggests durable remissions for a small percentage of IL-2 patients? Anything published on that?
  2. Reimbursement for ipi is the next big hurdle. It seems BMS set an extremely high price point knowing it would have to negotiate the price down with the formularies. Any reason to think this process won’t take many months given what’s been happening with Provenge? In the meanwhile, are compassionate use trials with ipi permanently closed? What happens to those who need/want ipi but can’t get into a trial and clearly can’t afford self-pay? Will BMS pony up until Medicare and the insurance companies make a judgment?
  3. Is there drug trial data that shows higher effectiveness for ipi at 10 mg/kg vs. 3 mg/kg? Does higher dose affect the rate of durable responses? Do FDA guidelines allow higher dosages?
  4. The assumption seems to be that BMS will now sit on its trials of anti-PD1 agents, which I’ve heard showed promise in phase I—higher response rate, lower toxicity. Are there other companies developing similar agents that might therefore accelerate their trials for melanoma patients?
  5. What other agents are there in trials that might ultimately replace current first-line treatment options? What about the tyrosine kinase inhibitors? Any way of judging their prospects?
  6. Any hope for OncoVex being a reasonable treatment options for m1a’s? Where is it in the development pipeline? What would it take for it to become competitive with ipi for those with sub-qs only?
  7. Sorry, I can't resist: Does anyone know how much BMS execs are paid?

Lots of questions. Anyone with informed answers? Thanks.

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Rendergirl's picture
Replies 24
Last reply 4/15/2011 - 5:34pm

I'm new here, just diagnosed with at least Stage 2 Malignant Melano on my upper chest. Next week I go in for pre-surgical bloodwork and lymphoscintigraphy and the day after is extensive surgery and lymph node biopsy. The lymphoscintigraphy sounds scarier than the actual surgery to me, the surgeon looked me right in the eye and said it would hurt, and some people complained of burning. If anyone has had this, please can you tell me your experience?? Level 1-10 for pain? I know everyone is different, but I feel the more info I have, the better I'll handle it, and I'm terrified.


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Anonymous's picture
Replies 2
Last reply 3/30/2011 - 9:42pm
Replies by: MichaelFL, Janner

Hi everyone.

I have had mm in-situ, have hundreds of moles, sibling had mm in-situ- so I am high risk.

I see derm every 6 months and have had probably 50 + moles removed, most mildly atypical, some moderate, and one severe.

I just had a very normal light tan freckle thing removed from toe which came back moderately atypical, which was surprising.

Anyways, I am on edge again because I have so many strange looking moles.

I had photos taken in 2002 (4x6's) and then again in 2009 (Very large ones-- much better)

My question is-- I have now discovered probably 10 moles that have really changed since my 2002 pics, but NOT since my summer 2009 pics.

The change is obvious-- darker or just more irregular, but not horribly extreme. In other words- none went from being a spec to now 7mm!

They are all still small (less than 4mm) but maybe just darker, one has a little brown spot, another is darker and also looks almost like two moles attached.

Botttom line, none look too sinister, but clearly my body makes atypical moles that do look very atypical

Do you all think I should be just concentrating on my most recent pics (now almost 2 years old) and monitoring change from there, or removing all that have changed from 2002? Is it normal to have some chage over 9 years? (I have had two kids since the first pictures) so I imagine the hormones plated a huge part.

Thanks for any advice. I am really getting worked up and can't even keep track of rhat I should deal with first!!

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MaryMary73's picture
Replies 6
Last reply 3/31/2011 - 6:08pm

A girl I work with knows someone who passed away this morning from melanoma. She isn't sure if it was nodular or superficial spreading but apparently it was quite deep at diagnosis and ended up spreading to her brain quite quickly and eventually her spine and bones. She was 36 years old and a lifelong sun-worshipper. She leaves behind 2 young teenagers. So flippin' sad.

What drives me insane is the fact that we work at an insurance company that handles group Long Term Disability claims. We know all about cancer yet I have some coworkers who are actually SURPRISED that skin cancer can be deadly.

The only real wisdom is knowing you know nothing -Socrates

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Anonymous's picture
Replies 1
Last reply 3/30/2011 - 8:40pm
Replies by: KatyWI


I have a friend in yervoy/IPI compassionate expanded use trial. She finished 2 infusions. Does anyone know if the 3rd & 4th infusion will still be free  through the trial. She contacted BMS and no one will give her an answer.

Anyone out there in this yervoy/IPI compassionate expanded use trial that knows how is BMS is handling payment (or FREE) for those who have not finished their 4th infusion of IPI of this trial. The study nurse at her location site did not even have the answer.

Thanks for posting your reply


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Charlie S's picture
Replies 6
Last reply 3/31/2011 - 11:49pm

Here is a link to an article that might offer some insight into what possibly lies ahead for Medicare to approve Yervoy.

Though the article is about Provenge, a Prostate cancer drug, the similarities are striking when comparing to Yervoy.

Provenge is an immunotherapy as is Yervoy.

Provenge extended overall  survival about 4 months in trials, about the same as Yervoy

Both are pricey: Provnege is 93K, Yervoy (at least now) 120K.

The troubling part is that Provenge was FDA approved in April of 2010 and it will still be another 90 days, following public input, before Medicare gives final approval to pay for Provenge.  Lets hope it doesn't take another 15 months for Yervoy.

Anyway, here is the article:


Charlie S

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Lkinnaman's picture
Replies 9
Last reply 6/23/2011 - 7:25am

Hi All! I am so happy to find you! I am a fulltime parent of 2 young children and after growing up in sunny So. Cal., was diagnosed with Nodular Melanoma about a month ago, a day before my birthday, have had PET/CT w/contrast, WLE and SNB. Node is clear, excision is clear and is localized to the arm. Melanoma was found in the adipose tissue and a "small cluster of malignant melanoma discontinuous w/ main bulk of tumor". However, the pathologist cannot determine if this tumor is the primary or secondary site! The original shave biopsy came back with at least a Breslow of 1.8 and Clark level IV deferring to final path report after WLE.

Blood work has been unremarkable, except for a mitotic index of 9. There is no ulceration, no lymph-vascular invasion, perineural invasion to identified, tumor infiltrating lymphocytes and regression are absent,

A final complication is that I have had rheumatoid arthritis for 25 years with several treatments that suppress my immune system.

According to my oncologist, I "have a very unusual tumor". With this info, I really don't know what to do. Do I look into trials, get a second opinion, push for a certain treatment, if at all?

Any suggestions are so much appreciated!

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