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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mwconklin's picture
Replies 7
Last reply 1/18/2015 - 2:07am
Replies by: mwconklin, Teochasse, Anonymous, Janner, JoshF, StephyD83

I had a PET scan yeterday and a brain MRI. MRI was clean but the pet scan showed something in my colon. I already had a GI doctor so oncology refered me to him. Of course my mind is in panic mode right now. I like to call them my melanoma moments when I panic about things. I was wondering if anyone knows by the pet scans can they tell if it is melanoma in my colon or could this be a completly seprate issue? When the cancer center called today it was a nurse, not my doctor and the information she was willing to give me was limited. Thanks

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Ginger8888's picture
Replies 14
Last reply 1/18/2015 - 12:26am

I was diagnosed with melanoma on Jan 17th 2014, had my mole removed then had surgery on Feb 28th with lymph nodes removed from my neck..At the end of April i did the 30 day HD interferon and failed it so was changed to Yervoy and finished it Aug 13th, my first scan showed that it was working and got rid of 2 spots in my lungs..I had my next scans Dec 13th and finally got my results yesterday and am now NED..Scans again in 3 months..Whoot!!

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StephyD83's picture
Replies 15
Last reply 1/17/2015 - 10:41pm

Hi everyone-

As soon as I wa on my way home from the scan I received the results. They found 2 masses but they are on my Pituitary gland. It says it is causing a bulge & a tilt to the stalk.

Has onyone ever heard of this before?

 

Thanks!
Stephanie

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/17/2015 - 5:41pm
Replies by: Maureen038

Hello all,

We had a biopsy procedure for my son to evaluate if the growth of the tumor is inflamation or tumor's growth. It is in pathology now.

Does anyone have an  experience with pathology confirmation for PD-1 response?

 

Thank you for the great support team,

Mom

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My neck tumor or tumors has been causing me to have choking and swallowing issues. Especially if the docs lay me in certain positions and things. I'm ok putting up with it day to day and eating albiet with issues.

Tomorrow though I'm supposed to have biopsy surgery finally. Is it my imagination or if they knock me out and put me in one of those positions can I choke to death?Since we didn't wait the extra two weeks it is just the surgeon of the day so I have no confidence in them from past experience there. Sorry for the crazy question but I've been having nightmares ever since the December mri when the neck tumor was better and I kept choking.

Artie

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Rocco's picture
Replies 7
Last reply 1/17/2015 - 3:44pm

Yesterday's Onc visit was great.  Scan results from last week show I'm still NED and I was given OK to move to an ANNUAL scanning frequency....this is a milestone!

Hang in there everyone!

Rocco, Stage IV since 2005; Ipi responder

Luke 1:37

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JoshF's picture
Replies 15
Last reply 1/17/2015 - 1:46pm

Got the call from my oncologist. Path didn't have all testing done but confirmed nodule in scar tissue is indeed melanoma with size <5mm and possibly lymph tissue;no other details. I've been going crazy so she called to see where they were in testing.

Pet Scan scheduled Wednesday, she wants more healing on cheek. I'm so disappointed... I really thought I was responder to ipi and/or IL2. I did Prometheus Labs trial combo of the two therapies. I know I have tests coming up but what do I do? What if it's just local recurrence? If it spread do I just go to PD-1? I'm sure that's what onc will want to do...I do see melanoma specialist but would seeing one with national reputation be better? Who would you all recommend? Wolchok...Weber etc? I've gotten so much support and advice from this forum...it's just hard when you're stuck in the unknown for 3rd time. Thanks to all....

Josh

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

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buffcody's picture
Replies 5
Last reply 1/17/2015 - 12:54pm

Many of us regulars know Joe Stevenson by his forum signature, Joey. Joey has been on the Forum many times past but not for a couple of months  I had been worried about him and was happy to receive a personal email two days ago. I was not happy, though, to see what he has been going through during his silence. He has not been up to posting here but gave me the go ahead to let people know what's going on. 

This will be a very condensed and inadequate version of what he wrote me. In brief, he has been quite ill following a second craniotomy last month. The surgery itself went well, but the complication of a deep vein thromobosis followed, becoming a pulmonary embolism that sent him to the ICU. With the addition of other measures, within a week or so he was able to be sent to a rehabilitation hospital for physical and occupational therapy directed to major problems with his left side and leg that had been present for 6 months and worsened after the surgery, preventing free movement without great pain. Unfortunately, after a week of seeming progress, the pain suddenly reached intolerable proportions; and he had to be taken to emergency in the hospital where he had been operated on. 

The diagnosis found internal bleeding into the back of his abdomen, probably made worse by anticoagulants he had been on. For a week or so he was in and out of consciousness and was in significant danger of death. Thankfully, he has experienced enough recovery now to be able to leave ICU and the hospital and return to the rehabilitation hospital. His current pain levels and physical capacities in general have worsened compared to those on his previous stay in this hospital, but there are still more questions than answers about the cause of what occurred and his future path. There has been no recurrence of the melanoma. Most all the rest of what he has been able to share with me is still in the state of "to be determined." He is very grateful for your thoughts and prayers and continues to appreciate them and will return to communicating himself when he is able. 

I hope my summary of Joey's own communication to me is both accurate and comprehensive enough. Having had a craniotomy myself in November I realize how fortunate I am that my own recovery has been so uncomplicated. Joey's story reminds me of my surgeon assuring me before the surgery that things should go very well but his quickly following this statement up with the addition of "But it is brain surgery." We all walk a path that has some degree of darkness. Even without a recurrence of the cancer itself, there are other obstacles we can stumble on. Many of the procedures we choose to have we choose because not choosing to keep walking is really not a choice. Living as a melanoma "survivor" is not for the weak, but we are still very grateful for waking up to life every morning even to face sometimes very difficult days.

Frank

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eturner82's picture
Replies 3
Last reply 1/17/2015 - 9:37am

My husbands doctor just called and moved up his PD-1 start date from next Wednesday to tomorrow!! Adam was not a responder to IPI and Braf drug worked for about 3 months. He has mets to hips, spine, femur and ribs ( to numerous to count) since finishing the ipi it has grown in both lungs, all mets in lungs are 6-11mm with one "large tumor" in the right. 

 I am aware PD1 works well in organs like the lungs but am nervous about bone mets responding! What can I expect as far as side effects? Any advice would be greatly appreciated!!

Emily 

 

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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
Manager
Elios Therapeutics
(864) 979-5438
buddy.long@perseuspci.com

This release was issued through WebWire(R). For more information, visit http://www.webwire.com.

http://www.webwire.com/ViewPressRel.asp?aId=194076

To view the original version on PR Newswire, visit:http://www.prnewswire.com/news-releases/personalized-cancer-vaccine-moves-to-phase-iib-trial-at-leading-us-cancer-hospitals-300013497.html

 

http://finance.yahoo.com/news/personalized-cancer-vaccine-moves-phase-11...

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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 >>>>>>>>>>> http://www.healthybiocare.com/nu-cambogia-extract/

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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 clinicaltrials.gov, "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

 

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.

Troy

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