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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LibbyinVA's picture
Replies 4
Last reply 6/14/2012 - 1:34pm

Just wondering...is PET scan still the best for determining metastasis of melanoma? It's been a while since I have done my homework in this area. If this is still true, does anyone have any suggestions on appealing insurance company denial of a PET scan?

I have melanoma but melanoma does not have me!

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Kimberly Duncan Watts's picture
Replies 5
Last reply 6/14/2012 - 9:26am

Scans yesterday. Prelim report in35 mins. Please please send what I call a ZAP prayer for NED.... Hugs for it and continued prayers for everyone. Thanks from the very depths of my heart and soul!

I can do all things through Christ who strengthens me.

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robbier's picture
Replies 1
Last reply 6/14/2012 - 2:02am
Replies by: JerryfromFauq

Well tomorrow I go for a cat  scan, then next Tuesday I will go so my Oncologist to get the result.  so far I have been in remission for 9 months now, and looking forward to getting a good report next week at checkup.  I can't believe that its been 9 months since surgery for melanoma,  classified at stage lll either A or B depending upon which Doctor you ask.   Haven't been to site lately, have decided to go to school and take a few classes.  Reapplying how to add, multiply and divide fractions.   

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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Becky's picture
Replies 10
Last reply 6/13/2012 - 9:30pm

Hi

I don't post often but read these boards daily. As a recap, my son Ben was dx with MM in June 2009, right before his 21st birthday. It was very rare oral melanoma (tongue) that had spread to one lymph node. 2 surgeries and one year of interferon.

He had been getting scans every 6 month and was due for one in january. But he was planning a 3 month trip to Europe ( your typical euro-rail pass-backpack-youth hostel trip with a buddy) and I think he was afraid they would find something on the scan and he wouldn't be able to go, so he asked the doctor to put it off till he got back. So, my scanxiety was even higher since it had been almost  year since his last one.

Just got the rresults, still NED..feeling very blessed!

Keep fighting everyone

Becky

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NYKaren's picture
Replies 19
Last reply 6/13/2012 - 4:53pm

Hi everyone.

So, as previously posted, had to stop Yervoy after 3 infusions due to pretty serious colitis.  Last infusion was 4/29; still dealing w/colitis.   Have already done radiation and IL-2.  After initial positive signs, was not a responder to either. 

After weaning off steroids 3 weeks ago, still experiencing extreme weakness, no appetite--loss of 20 lbs, even on Prednisone, and still  diarrhea with daily use of either Lomotil or Immodium and still on Endocort EC.

Endo. says my Adrenal gland never woke up after Pred. wean, so she started me on 15 mg./day of Hydrocort.  It is stopping the diarrhea and doesn't seem to have the horrible side-effects the Pred. did.

I don't think the Yervoy did anything...the mets on my face are on the move again, after halting during the Yervoy treatment.  The one under my chin that i was "saving" for "measurable disease" eligibility for Anti-Pd1 trial is bigger.

Spoke w/Dr. Wolchok today (seeing him next Thurs. after chest/abdomen CT).  He feels that the it would be dangerous for me to be in the Anti PD-1 trial. All those hopes--gone.  He thinks that I should have the met under my chin removed.   (I'm continuing to have the new mets frozen & applying Aldera.  Putting Aldera on my face--I might as well be applying Ponds cold cream--it does absolutely nothing.)   I asked him if the big side effect to worry about from PD-1 is pneumonia, what the problem is, he said that A) colitis has been reported, and B) he just won't take the chance.   And besides, all the seats at Sloan for the newest BMX trial version (Anti-PD1 after Ippi) are now filled.  

So, unless something develops on the CT scan next week, it looks like my  next step will be chemo. (Has to be CT, not PET to monitor colitis--there is now some kind of lump that moves when I touch it on my collar-bone--Dr. W. said if it's something, it should show up on CT, and he'll say more about it after he sees me).   I know it was stupid to hang my hat one one treatment, but I did.  I know I'm only IIIc unresectible (hopefully still.)  I'm just worried because the mets are spreading fast again, in my ear and from scalp to below chin.  I know I need to look at those around here at people so much worse off than I, put some gratitutide in my attitude and pull up the bootstraps again.  I just need a little help with that today. 

Please don't let this be one of those days that nobody responds to my post, even if you write to kick my ass, I need you guys.

Thanks,

karen

Don't Stop Believing

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Anonymous's picture
Replies 3
Last reply 6/12/2012 - 8:43pm
Replies by: Janner, washoegal

Once melanoma enters the VGP, does that mean that the mole starts to raise up or form a visible tumor? Can a VGP melanoma be flat?

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LibbyinVA's picture
Replies 8
Last reply 6/12/2012 - 2:47pm

Just wanted to share my story and some positive, hopeful news. On 6/6/2012 I celebrated 7 years of being NED. I was dx'ed in 2005 with stage IIIb metastatic melanoma. Treatment included several surgeries and a vaccine clinical trial in 2006 under Dr Anna Pavlick at NYU. Feeling very lucky to be alive but, missing too many friends made here on this board who were not as fortunate. I hope and pray daily for a cure for this awful disease. Never give up hope and believe in miracles...I am one!

Wishing everyone the best!

LibbyinVA

I have melanoma but melanoma does not have me!

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Anonymous's picture
Replies 10
Last reply 6/12/2012 - 6:54am
Replies by: MeNDave, Gene_S, Tim--MRF, Janner, Anonymous, Linny, kylez

I am so angry.  As a typical person living in US, I've been very good about protecting my skin from sunburns and not using tanning beds.  But I was dx with melanoma.  I feel it is misleading the way that all the info/public info is about sunblock.  Is that so they make money?  The info should be about new moles and moles that change.  It really doesn't matter if you use sunblock.  I did not think it would happen to me because I followed all the rules.  The melanoma campaign needs to change.  It can happen to anyone, not just tanning bed users and people who bake themselves to a crispy brown.  The information gives false sense of security to those of us who didn't abuse our skin.  It makes us think it can't happen to us.  I guess sort of like lung cancer can happen to people who don't smoke.  But it does happen.  I'm so angry that I ignored something because I wasn't a red head who burns easily and goes to a tanning bed.

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skgharst's picture
Replies 3
Last reply 6/12/2012 - 1:42am

My father has stage 4 mastitic melenoma. He started 3 weeks ago w/ Zelboraf, and he had been having mucus/heavy saliva/spit that makes him cough . He thought it may be sinus drainage & doesn't want to think about how it could be the melenoma. He  is wondering if it could be a side effect  of the drug. Has anyone else experienced anything similar?

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AlisonC's picture
Replies 9
Last reply 6/12/2012 - 12:47am

Hello fellow travelers,

I apologize that people have been asking about my friend David and that I haven't been earlier to share the news..even now it's news I don't want to write. David died on March 29th....leaving his wife Leah and their three young children. We all teach in the same school here in Singapore and it hit the community very hard (particularly since it's been a brutal year for our "family" here, with another colleague diagnosed that week with a stage IV brain tumour and a colleague diagnosed with stage III carcinoma only 3 weeks ago, on the day she gave birth to her second daughter). There was an amazing memorial in the school auditorium with over 700 people, including Dave's students, and out-takes from some of his films....he was a film teacher and in fact this time last year was preparing to shoot his first full length film, called "The Durian King" which you will find online if you google. Students and family have been raising money to finish the film's editing since he died because it was a life-long dream of his.

Dave didn't get to use temodar. His Mel just grew SO fast at the end. He was fine and in remission til October when he had his first 3 brain mets (resected and SRSd), then all was well until March, when there were 3 more...but pretty much right after they started WBR in the 2nd week of March, he was less responsive and in hospital. A scan 10 days later showed more than 20 tumours and he died a few days after that. He was BRAF positive - which we thought might mean he'd caught a break- but zelboraf didn't offer him what we had hoped.

I don't think I've ever known what to say when telling people, but telling this community seems particularly hard because I know how much I - and many people - use this forum to keep themselves buoyant ...or at least coping. That's been a disservice to Dave though because I should have posted earlier to let you know of his death since he had friends and a cheer squad here.

I hope it will be the last death for a long long while among the MPIP community.....

AlisonC
Stage IIIB
NED since 2001

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Carla Edge's picture
Replies 3
Last reply 6/11/2012 - 10:12pm
Replies by: kylez, Swanee

I am new to this board.  My husband is stage IV with a met on muscle around his small int.  He was diagnosed in Jan and was randomized into the TIL study at the NIH.  So far, they can't tell if the tumor is growing slowly or just changing shape.  We are deciding this week the next step to take- likely ipi.  Roy was feeling pretty good after release from hospital.  Two months later, he feels lousy.  He went from a rather normal existence with an afternoon doze to flat on his back on the couch most of the day.  Nothing seems to cheer him up.  Docs said to expect him to go backwards, but we didn't expect it to be this terrible.  I've tried to be supportive, but find myself acting impatient and "witch-like" sometimes.  Is this the proper forum to vent about all of this, or is there a similar board for spouses/caregivers?  I love reading posts on this board.  Thank you for sharing all of your stories.  They all give inspiration in one way or another.  Thank you all!

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CancerNetwork and the journal ONCOLOGY present exclusive melanoma coverage from the annual meeting of the American Society of Clinical Oncology (ASCO). Below we present an exclusive interview with Michael B. Atkins, MD, who discusses some of the most important information to come out of this year's meeting and talks about the future of melanoma research.

  Interview

Treatment of Melanoma: Latest Treatments and Emerging Therapies

CancerNetwork: There seem to be two principal promising avenues of therapy now for patients with metastatic melanoma: targeted, oncogene-directed therapy, and immunotherapy. The mechanisms of action involved in these two approaches are very different. Could you briefly summarize what you see as the greatest strengths and weaknesses of the two approaches?

Dr. Michael Atkins: The benefit of immunotherapies is that they can produce durable responses in a small subset of patients off the treatment and appear to work in patients with both BRAF mutant and BRAF wild-type melanomas. The benefit of the molecularly targeted therapies is they produce a high level of tumor shrinkage and survival benefits in a large proportion of patients with BRAF mutant melanomas. Those responses are likely short lived on a median of 6 to 8 months progression-free survival, but for patients with symptomatic disease who need a response, the high degree of response is a major benefit.

Click here to read more from this exclusive interview . . .

  Highlights

ASCO: MEK Inhibitors—Alone or Paired With a BRAF Inhibitor—Increase Options, Benefits for Patients With BRAF-Mutated Advanced Melanoma

At the ASCO annual meeting, researchers presented persuasive evidence that a new class of targeted agents-MEK inhibitors-may warrant inclusion in the growing armamentarium for patients with advanced BRAF-mutated melanoma.

ASCO: Programmed Death 1 (PD-1) Inhibitor One of the "Most Exciting" New Melanoma Agents

The class of agents that target the programmed death 1 (PD-1) pathway was described at ASCO as "likely the most exciting new agents recently developed in melanoma."

ASCO: Phase II/III Data Establish Dabrafenib as Second BRAF Inhibitor With Proven Efficacy in Metastatic Melanoma

Mature data from a phase III trial of dabrafenib vs dacarbazine (DTIC) as well as a phase II study assessing intracranial response to dabrafenib establish the drug as the second BRAF inhibitor with proven efficacy in V600-mutated melanoma.

ASCO: Expert Panel Explores Questions Regarding Drug Selection, Drug Sequencing in Advanced Melanoma

The new therapies that became available for advanced melanoma over the past year—the anti-CTLA4 antibody ipilimumab (Yervoy) and the selective BRAF inhibitor vemurafenib (Zelboraf)—represent promising new options for these patients, whose prognosis was heretofore almost universally dismal. However, the advent of new treatment strategies has made treatment decisions more complex.

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Anonymous
Replies 5
Last reply 6/11/2012 - 8:55am
Replies by: Janner, Anonymous, natasha

Population-based 20-year survival among people diagnosed with thin melanomas in Queensland, Australia.

 

Available clinical and histologic data from the Queensland Cancer Registry were obtained for all patients diagnosed with a single thin invasive melanoma from 1982 to 2006 and matched against national death registration data. Melanoma-specific survival estimates to December 31, 2007, were assessed, and subgroup differences in prognosis were determined by fitting multivariate Cox proportional hazard models.

 

RESULTS: Among 26,736 people in the state of Queensland diagnosed with thin melanomas, the 20-year survival was 96%

 

maybe I'm missing something. . but if they obtained data for patients from 1982 to 2006. . . how could they know anything about 20 year survival for anyone diagnosed after 1992, as it would not have even been 20 years yet. If they obtained data for patients from 1982 to 2006. . 2006 was just 6 years ago, how can they tell anything for those people about 20 year survival?

 

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Hello everyone.  I am reading many posts on this forum and wondering if any Stage IV patients/friends are on chemo or are you all just on clinical trials for your treatment.my brother is stage IV.  Thank god his brain and liver are clear but lung and G.I tract are involved.  He is finishing temodor and Abraxane. Had yervoy 12-2011. I don't see many of you on chemo in genral...except IL.  I don't see many on his chemo..temodor, abraxane

Many of you are on trials.  i would like him to consider Anti-PD1 but "time is of the Essence " as they say with melanoma.  time is not what you have when you are stage IV.  One day you have no mets to the brain and then the next few weeks...there it is.   How do you risk participating in a trial when you may have a placebo and not the real deal..and then it is too late...I think that I am missing info or mis-informed.  Appreciate any your advice.

Susan NY

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aynw's picture
Replies 9
Last reply 6/11/2012 - 7:34am

In late 2008 I was diagnosed with mm on my left thigh. Had a WLE in Nov 2008 that confirmed it was in situ and clear margins, so no further treatment was required, just skin checks every 6 months. In Jan 2011 I went to see my GP for a lump that was growing on my right calf. At the visit we noticed a mole of concern behind my knee about 4 inches away. I got into CancerCare right away and they removed both. Results came back 2 weeks ago - the lump was nothing of concern, but the mole was invasive mm - breslow of 1.65, clark level 4. I had surgery last week - WLE with skin graft and SLNB. Now I am at home recovering and waiting for results. Because everything happened so quickly and I was scheduled for surgery at the same time we received the results, I haven't had a chance to really understand what the next steps may be, and I won't see my oncologist till mid-April.  Does anyone know what is a typical treatment for a recurrence like this?  I have an idea if there is lymph node involvement what will come, but what if they come back clear (hopefully)?  Is the surgery all, or should I expect more tests, therapy, etc?  I am frightened that this recurrence happened so quickly, as I had my last skin check in Oct and everything looked fine.  How can I be sure that there isn't something else happening that we can't see?  Any advice would be appreciated. 

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