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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Replies by: Brent Morris

Personalized Cancer Vaccine Moves to Phase IIb Trial at Leading U.S. Cancer Hospitals
U.S. Federal Drug Administration (FDA) Approves Randomized Trial of Elios Therapeutics' Immunotherapy Treatment for Stage III and IV (resected) Melanoma Patients

AUSTIN, Texas, Dec. 23, 2014 /PRNewswire/ -- Elios Therapeutics, LLC recently received FDA approval of its Investigational New Drug (IND) application and its randomized phase IIb trial planned to enroll 120 stage III and IV (resected) melanoma patients to assess the ability of a personalized vaccine to prevent recurrence.  The trial will be conducted at a dozen leading academic cancer research hospitals in the United States.


The Elios melanoma vaccine to be assessed in this pivotal trial will deliver personalized immunotherapy developed from the patient's cancer cells and dendritic cells to create a specific immune response in hopes of destroying any remaining cancer cells after surgery and thereby prevent recurrence of melanoma and improve overall survival rates.  Qualifying trial patients must be in stage III or IV and considered disease-free after definitive surgery and completion of standard of care therapies.    

"The Elios vaccine has shown effectiveness in metastatic patients, and delivered even more promising results in the adjuvant setting.  Further, the vaccine has the safety profile to allow for treatment in a preventive setting," explains George E. Peoples, MD, FACS and Chief Medical Officer, Elios Therapeutics, LLC. "Stage III and IV melanoma patients do not currently have an option for a safe, non-toxic, and effective adjuvant therapy.  Melanoma at this stage recurs at an approximately 60-70 percent rate in two years, and once that happens, patients will very likely succumb to their disease.  We believe that our vaccine technology can cut that rate significantly, preventing recurrence and death."

The Elios Therapeutics' prospective, randomized, double-blind trial (NCT#02301611) is enrolling patients now, and it is anticipated that all 12-15 sites, to include the lead site at John Wayne Cancer Institute in Santa Monica, California, will open early in 2015.  The trial is expected to conclude in 2018.

The vaccine being studied was developed by Elios Therapeutics' Thomas Wagner, PhD.

"Our approach is completely different than others, in that we don't need to identify a specific mutation or create a new drug to treat each type of cancer," explains Dr. Wagner. "This vaccine utilizes a particular patient tumor's unique antigenic and molecular profile and a novel delivery mechanism to set the immune system to defeat that patient's disease.  Our therapy is applicable to any patient, with any tumor.


"The adjuvant therapies available for melanoma today to prevent recurrence are highly toxic and largely ineffective. We believe our vaccine has the potential to make a real impact in this setting by targeting and killing remaining metastatic cells without causing any dangerous side effects," says Dr. Wagner.

About Elios Therapeutics

Austin, Texas-based Elios Therapeutics is a subsidiary of Orbis Health Solutions. The company's personalized immunotherapy treatment for cancer was developed by Thomas Wagner, Ph.D., an innovator responsible for pioneering some of the past half-century's most important biomedical technologies.

Press Release Contact Information:
Buddy Long
Elios Therapeutics
(864) 979-5438

This release was issued through WebWire(R). For more information, visit

To view the original version on PR Newswire, visit:

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marrkwalker25's picture
Replies 1
Last reply 1/16/2015 - 5:30pm
Replies by: Anonymous

Dr. Frank Diet - Why so popular?

Dr. Frank has his enormous popularity especially due to the constant positive coverage in The Guardian. Meanwhile website has thousands of returning visitors and there begins to emerge a true interactive community. For example, there is a Dr. Frank Hyves Nu Cambogia Extract profile, a Dr. Frank Twitter account, a Dr. Frank newsletter, Dr. Dr. Frank contests etc. Frank so it should primarily of personal branding. American trending tag expressions (see website) as Dr. Oz him not surprising. In addition, late Dr. Frank treat people in professional Previtas clinics for weight management of Prof. Dr. Wolffenbuttel, which is affiliated with the University of Groningen. Nothing is left to chance.



Try this site >>>>>>>>>>>

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Jsneathen21's picture
Replies 2
Last reply 1/16/2015 - 1:08pm
Replies by: mwconklin, StephyD83

I got my drain removed today! Yay! As far as the pathologist results basically if I call on Monday and they have my results that will be a good thing. If I call on Monday and they don't have my results that is not a good thing he told me that if they find anything unusual it will have to be sent off to Raymond Barnhill the pathologist who diagnosed me originally at UCLA ... So lets hope Raymond Barnhill is wrong about all of this ... Prayers for a good outcome no spreading !

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kylez's picture
Replies 1
Last reply 1/16/2015 - 1:16am
Replies by: kylez
Just read about this new phase III trial of 'Polynomal' vaccine, so-named because it includes several hundred antigens from 3 different melanoma cell lines. They say they will be enrolling 1100 melanoma patients.

It's up on, "A Multicenter, Double-blind, Placebo-controlled, Adaptive Phase 3 Trial of POL-103A Polyvalent Melanoma Vaccine in Post-resection Melanoma Patients With a High Risk of Recurrence".


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Vicki88's picture
Replies 7
Last reply 1/16/2015 - 12:12am

My husband was recently diagnosed by a shaved biopsy from a spot on his nose.  He also has a streak under his fingernail that has not been addressed.

Upon the diagnose of melanoma, he was referred to a dermatologist specializing is Moh's surgery who is recommending removal with plastic surgery repair the following day.

My question is that, with no full body exam done by either dermatologist, is the normal proticol?

Also, since we failed to point out the streak under his fingernail, is there possibly more going on and if so, is seeing a specialist with Moh's surgery enough to address a more systemic possiblity?  He did do a physical exam by feeling each of his lymph nodes.  Is this enough?

I read that some melanoma's, if caught early and by their location, were less likely to spread.  Only, I do not know where these types of melanoma's are, nor what types of tests are needed to determine if they have or have not spread.

It is just over an hour to see these doctor's and would be the same amount of time to go on to MD Anderson. 

Should we go on to MD Anderson to have the whole body addressed?

Thank you for answering...Vicki88



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TSchulz's picture
Replies 9
Last reply 1/15/2015 - 11:37pm

It has been a long time since I have posted here but my life has been touched by people dealing with melanoma several times in recent weeks and I thought I'd share my status.   

I received the "standard" protocol of TIL at NIH in May of 2012.  I had an amazing response to treatment and was declared NED about a year after that.  My wonderful NED status has continued without a bump in the road.  Because things had progressed so well following treatment, my wife and I (being encouraged by my doctors saying that I should expect to be around awhile) decided to try to a second child.  We welcomed a beautiful baby boy into our family in early November. 

Almost every day I think about my time dealing with melanoma -along with all those dealing with it today.  I wish you all the best year in whatever phase you are in: Having it sucks, loving someone who has it sucks and getting over having it isn't easy either.  And to all those who are supporting someone out there - you rock! 

Happy 2015.


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Anonymous's picture
Replies 4
Last reply 1/15/2015 - 7:11pm
Replies by: Anonymous, Bubbles, arthurjedi007

My husband took Dabrafanib and Mekinist for 6 weeks with no problem and excellent results. Then he developed fevers. They took him off the Mekinist as a result.  They took him off of Dabrafanib after he developed eye inflammation.  Now over two months later, he was instructed to try the Dabrafanib again and with in 24 hours he is starting to get fevers again.  He is not to take prednisone, so any other way to stop fevers? Otherwise, he will havae to stop dabra probably.

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I've been taking 5mg oxycodone pills for a couple months now for the pain. That was via my medical oncologist.

Today my radiation oncologist prescribed this Fentanyl patch.

i assume it won't hurt the affectiveness of Keytruda Pd1?

Any other major concerns I should have? It seems like the side affects I've read are similar to oxycodone. But since it is a skin patch and I have melanoma I'm like huh is this really what I should be doing.



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rick1981's picture
Replies 6
Last reply 1/15/2015 - 6:51am
Replies by: Wader, Bubbles, Mat, Anonymous, democat

(I'm not basing the combo with my last two topics, these just are new releases that are hopefully helping others)

New research on the combo:

Moffitt Cancer Center researchers have discovered a mechanism that leads to resistance to targeted therapy in melanoma patients and are investigating strategies to counteract it. Targeted biological therapy can reduce toxicity and improve outcomes for many cancer patients, when compared to the adverse effects of standard chemotherapeutic drugs. However, patients often develop resistance to these targeted therapies, resulting in more aggressive cells that can spread to other sites or cause regrowth of primary tumors.

Moffitt researchers found that patients who are on B-Raf inhibitor drugs develop more new metastases than patients who are on standard chemotherapy.

They found that melanoma cells that are resistant to B-Raf inhibitors tend to be more aggressive and invasive, thereby allowing the tumor to spread to a new organ site.

My wife has had a good benefit from the combo when she urgently needed them to work. However, she came out of the treatment (when resistance occured) with new and aggressively spreading mets - so although N=1, this does sound familiar and makes me regret in hindsight that we didn't move to immonutherapie before resistance occured.

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Jsneathen21's picture
Replies 10
Last reply 1/15/2015 - 4:59am
Replies by: Jsneathen21, mwconklin, Anonymous, kpcollins31, JoshF

Just giving everyone an up date. I am doing ok besides the pain. The graft I feel is more painful then the sentinel node biopsy is.pain meds are not really helping with the pain for the graft...i am having to take phenogren for the nausea (talwin)the pain med makes me sick anyways thanks every one for your support❤

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StephyD83's picture
Replies 8
Last reply 1/15/2015 - 3:05am

Hi everyone-

I had posted last week regarding new symptoms that I have been having as far as having a foggy brain & a headache that has lasted for 5 + days. I went to the Dr. yesterday & she performed a bunch of test & said that I failed a few & she needed to order a MRI STAT to rule out Brain Mets. I am very concerned at this point.

How likely/possible would it be that it has treaveled to my brain? History-I was Misdiagionised 2 years ago I actually had Stage 1A with margins involved that was not re-excised for 1 1/2 years then I had only 5mm margins removed in March 2014 & to date I have not had the other surgury for the additional 5mm yet.

Any advise would be great.



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marissav's picture
Replies 2
Last reply 1/14/2015 - 11:00pm
Replies by: SABKLYN, JustMeInCA

On Christmas Eve I was given the biopsy results of a mole that I had removed.  The nurse practitioner that had removed the mole came into the room and said, bad news, it's melanoma.   I had anticipated these results and had done some research.  My head was spinning but I remembered to asked the stage.  She said Stage IV.   I asked her how she knew it had spread and she said, it's Clarks Level IV, which is Stage IV.  My world turned up side down at that very moment.  My husband and I went home to tell my three girls, elderly parents and friends the devasting news.   But something didn't feel right...

I got on the internet and began searching.   Thankfully I found this forum and was able to get reassurance from several people that the diagnosis was premature at best.  Though still sick with worry, I managed to get through the holidays feeling more confident that I was stage I or II based on the pathology report.

Since then I have met with an oncologist, had a wide exicision with sentinel node biopsy and MRI.  Thankfully the MRI was clear and so were the lymph nodes.   I am officially stage 1b.

I have sent a letter to my dermatologist to inform him of the mistake that his nurse practitioner made that day.   My hope is that no one else will go through the pain and distress of a misdiagnosis from her.   I would also like an apology but I realize that probably won't happen.

I just want to thank everyone who took the time to reply to my post.   That reassurance was the best present I could have received that Christimas.   I am so thankful this forum is here to answer my many questions.  I am sure there will be many more questions as time goes by and I am happy to have this support system.

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Lauri England's picture
Replies 6
Last reply 1/14/2015 - 12:29pm

I have been NED for 4 and a half years. On Thanksgiving I noticed a bebe size lump on left side of my neck.   I gave it a week and it doubled in size.  I went to my family doctor and she refered me right on to my oncologist.  I had a CT scan December 9th 2014 and got results back December 16th.  I have a 4 inch mass in the upper part of my left lung and a 10mm size mass right behind my liver.  Doctor right now is not sure of this is spread of Melanoma or another type of cancer.  Next week I will be going in for PET scan and diopsy to confirm.  Not sure what is going to happen next.  Very scared once again.  I beat this once and I feel in my heart I can do it again...

Don't sweat the small stuff. There are bigger fish to fry!

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misenber's picture
Replies 4
Last reply 1/14/2015 - 9:48am
Replies by: misenber, Anonymous, Janner

Last week I was told that the mole I had removed from my back was melanoma and is Clarks Level 2, less than 1 mm.  I was to havethe spot removed tomorrow, but the surgeon called and told me they have to postpone because after speaking with the pathologist, he is going to have to remove a lymph node and test it and wouldn't have the eqipment available for another week.  I am, of course distraught, but also very confused. I researched the Clarks Level 2, but can't coordinate it to the Melanoma staging, which seems to give more specific information about treatment, seriusness, prognosis, etc. I have not yet seen an oncologist, I am dealing with a general surgeon who will refer me to an oncologist after the surgery. I am 63 years old and this is my first diagnosis of melanoma. Can someone point me to a good place to get straightforward information that is easy to understand?

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