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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meeshka6059's picture
Replies 7
Last reply 3/31/2013 - 3:23pm

It is with great sadness that I tell you that I lost my father to this dreaded disease yesterday morning at 7:30am. He went peacefully and pain free, surrounded by love. Thank you for all your support and kindness, and thank you for being here with me on this journey. With love and light. ~Michelle

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buffcody's picture
Replies 8
Last reply 3/30/2013 - 9:50pm

I was at my oncologist's today, and he feels the course of ipi was probably successful given the fact that the one tumor I have has not grown much if at all and, despite having had two brain tumors, there have been no new tumors anywhere over the last two months.  After one more set of scans two months from now, if all stays more or less the same (I will have the one tumor removed surgically), he would recommend a reinduction of ipi.  He did warn, however, that, as I am on Medicare, that Medicare seems to not pay for a reinduction of ipi.  Have any of you faced a similar situation?  Was that your take also?  Can you think of a path around paying $200,000 or more out of pocket.  The University of Michigan Hospitals, not surprisingly, are not going to pick it up.

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Wolverine's picture
Replies 4
Last reply 3/28/2013 - 11:06pm

I am stage IIIC melanoma with unknown primary.  I have been taken Interferon since November 2012.  Overall I have done fine with the exception of being wiped out (tired) and a little weight loss.  I haven't had the energy to exercise.  I am seriously considering taking off for the spring/summer.  As I understand, Interferon has not been proven to extend overall survival rates.  I have come to the opinion that I have a better chance of survival if I am not worn down and unable to stay active.

Wishing everyone well.

Everyday is a Gift so Fight Strong, Live Long

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DonW's picture
Replies 24
Last reply 4/11/2013 - 7:41pm

Unfortunately, the news isn't good. Dian's husband, Bob, called me this morning with the news that after going home from her IL2 treatment, Dian had a brain hemmorage and is now back in Sacred Heart hospital in Spokane. Apparently the bleeding is stabilized now, but Dian is in and out of consciousness and she has motor problems on one side. Bob thinks she might have had an undetected brain met that caused the problem. Not much else to say other than I'm hoping she come through this.  

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jeffjohn78's picture
Replies 7
Last reply 3/28/2013 - 11:29am



Got great news today!  Had previously a 1 cm tumor in y arm, 4.3 cm nodule in my lower left abdomen and 1.9 cm nodual in my upper left abdomen.  As well as 7 mm and 2mm spots in my brain.


Found out today, both brain spots are gone, the arm tumor is gone, and both abdomen tumors are shrinking!  best news I could have heard....


I am currently in a clinical trial at the Angeles Clinic in Los Angeles...Ipi and experimental pill.  pill doesn't have a name just an bunch of letters and numbers lol.  Its a new trial as I believe I was only the 2nd patient enrolled.  I believe the ful name of my trial is on my profile.


Feeling very grateful today to say the least!



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randallgford's picture
Replies 1
Last reply 3/27/2013 - 6:20pm
Replies by: Anonymous

Several times I've gone back to my profile to put dates and details.

I save it, then the next time I come online its not there. What could

I be doing wrong?

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Tim--MRF's picture
Replies 3
Last reply 3/27/2013 - 11:33pm

I have good news and bad news.  

The good new is that we now have a functioning Chat room.  We purchased an off the shelf, bare-bones module while trying to fix the fancier version.  

The bad new is that because this is a free standing module it doesn't link back to the "who's chatting" section of our website.  People may be in chat, but you won't be able to tell without entering chat yourself.

I have a couple of suggestions about this:

1) Try dropping in to Chat when you have time to see if anyone is there.  If possible, linger for a while in hopes someone else will drop in.

2) When you know you have time to be in Chat, post on the main bulletin board that you will be there.  Others may see the post and choose to join you.

3) Find a set time when you will be in chat and post a message about that.  (Be sure to include time zone information!)

I hope we can revive the chat community.  I have great memories of meeting new people, talking about good food, good fun, melanoma issues, family issues.  

Oh, and we think we have solved the problem with slow posting as well.  A glitch in something called Apache....


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mbaelaporte's picture
Replies 5
Last reply 3/31/2013 - 11:49pm

I have enjoyed reading of the improvements in health and disease recorded by some of the participants in these trials..Praise be

most recently noticing Melanoma in the City ( I've tried clicking reply to your blog for communicating  but maybe doesn't work ) and the team of Randy & Amanda

Would you please talk to how your participation is being financed - does your insurance company fund trials? Is there a charity or organization that  recognizes  that patients  play a huge part in the development of these medicines that are providing hope & wellness and that we need assistance in the evolution of said medicines.

I touched on this in prior post but some fine print and elaboration has come to pass.  Upon hearing of my rejection from my ins. co. I asked about self pay not wanting to let pass maybe the only thing that will help prolong my life.  There was no real follow up other than yes I could be considered if I chose to go that route.   Without hearing back I had to formally request a study budget from my provider and after a little prodding  I received an email from my provider 15 plus days later called a "breakdown" of my costs:  just south of $ 160,000.00 with an itemization of say ten costs like CTscans  -  $78,932.00 - no designation of how  many or for how long a treatment schedule this deposit was to cover.

I replyed back re: their breakdown;  you call that a breakdown; a breakdown is what I'm having right now contending w / this news.

this email was cc to a number of others & I received  a more compassionate letter the next day from someone directly involved w / the trial and the deposit number had been reduced to a little under one hundred thousand dollars and given a time frame of six months treatment.

I'm looking for a "competitor" trial provider,  organization that supports all the legs of trial costs,  etc...

news on how you are doing it,  your success... all stories most encouraged, thanks,  john 

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sailinjeffnk's picture
Replies 4
Last reply 3/27/2013 - 2:10pm

I'm going in for a VATS lobectomy to take the lower lobe of my left lung this Thursday (3/28/13).


I'm a 29 year old male.

I was previously stage iiib with 2 involved lymph nodes in right neck, had full rt neck dissection, radiation and 1 mo high dose interferon and 3 months low dose interferon before stopping in October of 2012.  Scan in November of 2012 showed a dim spot in the lung and we watched and waited.  Unfortunately it got bigger and brighter and is too deep in the lung to biopsy so docs are going to nip it in the bud and take the lobe.  This is the only spot that is showing up anywhere, so I'm hoping that this procedure is the end of it.

Has anyone had a VATS lobectomy?  


Would love to hear some tips from warriors that have been through this one.

My photography:

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LynnLuc's picture
Replies 9
Last reply 4/14/2013 - 3:15am

Today is my 3 year NED ( No Evidence of Disease ) Anniversary with Stage 4 Melanoma!e 4 melanoma!- Lynn

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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randallgford's picture
Replies 4
Last reply 3/26/2013 - 1:40pm

Sunday morning after coffee and shower, my husband got a heart palpitation. He has a history

of minor palpitations (about 120 -130 bpm) and lies down, meditates, bears down, takes a lo-dose

xanax and it goes away. Only 1 or 2 times a year. This time it wouldnt stop and we have a monitor

I checked it was 189! Hospital is 5 minutes away, so i rushed him to er, they gave him a iv med

that basically stopped his heart for a few seconds to interupt the rhythm. Worked immediately.

Then of course,, ekg, ct, blood work, everything normal, kept him overnite for observation.

MEANWHILE, we have 2nd Yervoy scheduled for Tuesday, mti/ct prep Wednes. for cyberknife Friday

for 5 small brain mets. Oncologist came in and saw him and sees no problem in continuing the plan,

does  not think treatment effected heart and suggested a long-acting beta blocker for the heart palp. issue. Hubby feels

better and we are going for it! but honestly what a roller coaster. But the great news is, BRAF test came back positive,

so Zelboraf is on the table but doc ants to continue Yervoy and assess after scans, then depending on response may 

start Zelboraf. I am hopeful, we at least have a plan B. Meanwhile Im fighting cold/sinus/sore throat/who knows what,

pretty miserable and trying to care for hubby without getting him additionally ill. Tough couple of days.


Never give up!

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Janet Lee's picture
Replies 6
Last reply 3/27/2013 - 2:25pm

My husband Don began Zelboraf on March 15. At that time, his LDH was 286. One week later, his LDH was 201.

How long does it typically take to know if the Z is working? Does it matter how much disease there is? (Our doctor says Don's disease is very advanced.)

Janet Lee

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tony9511's picture
Replies 10
Last reply 3/30/2013 - 10:10am

My Onc just called me in this morning.  I was wondering about the results of the node pathologies from last weeks wide excision.  Was concerned the first time I dxed with mel the tracer showed it only draining to my neck.  When the mel recurrence came back and I had my surgery last Tuesday, the pet scan was neg but the tracer showed it draining to both my neck node and armpit node.  Well the neck was pos for cancer so I have the surgery set for neck disection April 12, than I will be on interferon (sp) for a year.  Thanks to all who viewed my ramblings and replied.  I am positive I can beat this crap and live a good life.  Being 39 my goal is to make it as long as possible.  To all the brave souls affected by this terrible disease and their loved ones god bless and I pray for you all.  I am still learning so much about it.


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parkmk80's picture
Replies 11
Last reply 3/27/2013 - 7:10pm
Replies by: parkmk80, Janner, Anonymous

I have dysplastic nevus syndrome and my derm only gets clear margins on Moderately to severe dysplastic nevi.  I have had about 25+ biopsies and have been reading through my path reports and I noticed that he doesn't get clear margins.  I asked him about this and he said it is not cancer and even if cells are left behind that is not a concern.  What are ya'lls thoughts and opinions on this?  Honestly, it scares me to death!

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Anonymous's picture
Replies 2
Last reply 3/26/2013 - 8:11am
Replies by: Tina D, Anonymous

Efficacy and Safety of Retreatment With Ipilimumab in Patients With Pretreated Advanced Melanoma Who Progressed After Initially Achieving Disease Control


Clin Cancer Res. 2013 Feb 26;[Epub Ahead of Print] , C Robert, D Schadendorf, M Messina, et al



The investigators in this retrospective study of patients with late-stage melanoma who responded to initial treatment and were retreated with ipilumumab after progression, concluded that durable response/stable disease was achieved without added toxicity.


OncologySTAT Editorial Team

It is well known that the immune system plays a dual role in cancer. It can suppress tumor growth by destroying cancer cells or by inhibiting their outgrowth, and it can also promote tumor progression by selecting tumor cells that are better fit to survive in an immunocompetent host or by establishing conditions within the tumor that may facilitate outgrowth.

The immune response against cancer centers on three stages: elimination, equilibrium, and escape. In the absence of complete elimination, persistent immune activation is required to sustain equilibrium between tumor growth and immunity, thereby delaying or preventing disease relapse. However, persisting immune responses are also capable of altering the phenotype of the tumor via a process known as immunoediting. This process has application to the treatment of many cancers, including melanoma.

Developing more effective treatments, including those that target relapses, may center on agents that are able to restart immunotherapy after disease progression to reactivate the primed immune system to recognize and respond to any remaining tumor or tumor cells that have appeared during the tumor escape phase.

One such agent is ipilimumab, a fully human monoclonal antibody. Ipilimumab, unlike chemotherapeutic agents that kill tumor cells by direct cytotoxicity, is known to block cytotoxic T lymphocyte–associated antigen-4 (CTLA-4), thereby potentiating T cell–mediated antitumor immune responses. With that in mind, Robert and colleagues conducted a retrospective study of the use of ipilimumab as retreatment in patients with pretreated advanced melanoma who progressed after initially achieving disease control.

The investigators analyzed the medical records of patients with unresectable stage III or IV melanoma. Patients were previously treated with one or more of the following: dacarbazine, temozolomide, fotemustine, carboplatin, and interleukin-2. Patients received ipilimumab with gp100 peptide vaccine, ipilimumab alone, or gp100 peptide vaccine alone.

The investigators identified 32 patients who met the criteria for consideration in the efficacy analyses. Response rates for the groups receiving ipilimumab with gp100 peptide vaccine or ipilimumab alone were 13.0% and 37.5%, respectively. The disease control rate for the groups receiving ipilimumab with gp100 peptide vaccine or ipilimumab alone were 65.2% and 75.0%, respectively. Of note, 61.3% of patients retreated with ipilimumab survived > 2 years and 6 patients achieved a better response after retreatment than after their original treatment.

There were no new toxicities associated with retreatment with ipilimumab, and toxicities that were seen during initial treatment did not predispose patients to retreatment toxicity.

In closing, this retrospective study demonstrated that the majority of patients with late-stage melanoma who were retreated with ipilimumab achieved durable disease control lasting longer than 2 years. The investigators suggested that if patients meet defined criteria, retreatment with ipilimumab can translate into clinical benefit with no deleterious morbidity.

Access this article »

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