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.

Expand/ Collapse Topic
 
Replies By
View Topic
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

Login or register to post replies.

JoshF's picture
Replies 6
Last reply 1/18/2015 - 5:16pm

Anyone ever hear from Aldakota? He had the lepto issues going on and it's been a long time. He is always so strong and inspirational. He hasn't posted in long time...I hope all is well but I'm worried.

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

Login or register to post replies.

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

Login or register to post replies.

Mat's picture
Replies 4
Last reply 1/19/2015 - 8:22pm
Replies by: Bubbles, Anonymous, Maureen038, BrianP

Presumably a few years away, but given the institutions involved, I thought it worthwhile to post this.  While the article speaks to cancer generally, there is a note that the researchers have had success with HSP70 inhibitors in melanoma in mice.:

GSK, Penn, Wistar partnership takes on cancer, believe they've found its 'Achilles heel'

Jan 14, 2015, 12:00pm EST Updated: Jan 15, 2015, 9:08am EST

Wistar's Maureen Murphy and Penn's Donna George are working with GlaxoSmithKline on an experimental cancer treatment.

John GeorgeSenior Reporter- Philadelphia Business JournalEmail  |  Twitter  |  Google+

A trio of scientists have started working with researchers at GlaxoSmitKline on a potential cure for cancer. In fact, they believe they've found the diseases' "Achilles heel."

Last month, GlaxoSmithKline (NYSE: GSK) selected a Wistar/Penn project for its 2014 Discovery Fast Track Challenge program, which was created to accelerate the development of new medicines.

The project was submitted by: Maureen Murphy, a Wistar professor and program leader of the institute's molecular and cellular oncogenesis program; Donna George, a Penn associate professor of genetics; and Julie Leu, an assistant professor in genetics at Penn. It was the only research project involving Philadelphia-area scientists selected for GSK's two-year-old Discovery Fast Track Challenge. GSK chose 14 research project proposals for the program from 428 entries from researchers in 26 countries.

Targeting cells cancer needs to survive

The Penn/Wistar scientists are looking to develop a drug that targets a stress-induced protein, called Heat Shock Protein 70 or HSP70, that's found in low levels in normal cells, but is over-expressed in most tumor cells.

"Normal cells don't need HSP70 to survive, but cancer cells do," Murphy said. It's the Achilles heel of cancer."

The protein, Murphy explained, is linked to autophagy, which is the process through which the body in times of stress promotes survival by self-digestion. Cancer cells use the same process to survive.

"If you limit autography, normal cells will live for a time," Murphy said. "Cancer cells will die immediately.

George, Leu and Murphy discovered a series of HSP70 inhibitors that have shown to be effective against lymphoma and melanoma in mice.

They discovered the new drug candidates while studying a tumor suppressor protein known as p53. During that process, they determined that a small molecule called 2-Phenylethynesulfonamide, or PES, modified the activity of the p53 protein. They didn't know, however, what the molecule targeted to cause the modification.

To find out, George said, they had to reverse the normal drug-discovery process. Instead of identifying a target linked to a disease and developing a drug that can modify the target, the Wistar and Penn team took the more arduous route of starting with the drug candidate, but need to find the target.

"We used the drug as bait to find out what would hook onto it," George said.

The effort eventually led them to HSP70.

Murphy said they are now working with scientists in GSK Discovery Partnerships with Academia and the drug company's molecular discovery research team in the screening of their target against GSK's vast compound collection.

"We are looking for new drugs that target HSP70, and modifying our existing drug candidates to make them better," she said. "When you look at their drug screening facility, it is unbelievable. It's the size of a football field."

George said the program combines the expertise Murphy, Leu and she have with the protein, and how to target it, with the skills GSK has to rapidly test tens of thousands of compounds for a certain desired activity.

"Those are things we can't afford to do," George said. "They are not the kind of things you can do in a small lab."

Murphy said while scientists may do assays in a small number of test tubes in their lab, a pharmaceutical company like GSK will do tens of thousands of assays in a time in a "high throughput" manner with the technology they have.

Login or register to post replies.

Anonymous's picture
Replies 6
Last reply 1/18/2015 - 1:56pm
Replies by: Anonymous, Brent Morris

Official title: A Prospective, Randomized, Blinded, Placebo-controlled, Phase IIb Trial of an Autologous Tumor Lysate (TL) + Yeast Cell Wall Particles (YCWP) + Dendritic Cells (DC) Vaccine vs Unloaded YCWP + DC in Stage III and Stage IV (Resected) Melanoma to Prevent Recurrence.

Purpose: The majority of melanoma vaccines tested to date have been antigen-specific vaccines targeting melanoma-specific or associated antigens and utilizing a variety of delivery systems and immune-adjuvants. As opposed to testing an "off the shelf" vaccine that might be able to treat a subset of patients, our approach has been personalized to the patient and applicable to all patients. Our vaccine approach consists of harnessing the most potent antigen presenting cell in the body - the dendritic cell (DC) - together with the full repertoire of tumor antigens from an individual's cancer. We have conducted phase I and II studies using an autologous DC-tumor cell fusion technique that has now been simplified into a DC-tumor cell lysate vaccine. The autologous tumor lysate (TL) is loaded into yeast cell wall particles (YCWP) that are naturally and efficiently taken up into the patient's DC. These autologous tumor lysate, particle-loaded, DC (TLPLDC) are injected intradermally (ID) monthly x 3 followed by boosters at 6, 12, and 18 months.

From ClinicalTrials.gov, https://clinicaltrials.gov/ct2/show/NCT02301611?term=Elios&rank=1 

 

Login or register to post replies.

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...

Login or register to post replies.

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".

 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 4
Last reply 1/18/2015 - 6:13pm
Replies by: Maureen038, Anonymous, kylez

Hi all,

My son, 7 Y.O is on PD-1 (every 3 weeks 2mg/kg of MK-3475 / Keytruda). He received the 3rd dose this week.

He is complaning about his left eye and his eyes are red for a while.

The tumor is in his left side of the neck (close but not near the eye)

Any thoughts? I think that it is related to the PD-1.

 

Many thanks,

mom

Login or register to post replies.

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

Login or register to post replies.

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 

 

Login or register to post replies.

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!!!!

Login or register to post replies.

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

Login or register to post replies.

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 !

Login or register to post replies.

jualonso's picture
Replies 11
Last reply 1/18/2015 - 6:18pm

Hi folks,

Im now after fourth dose of ipi, and will go to pd1 if it does not work. In this moment im thinking of a possible future, and i would like to know the steps i have to follow to get TIL treatment at NIH. Im spanish so i dont really know even if it is possible.

Every comment will be welcome.

Thanks

Juan

Login or register to post replies.

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

Login or register to post replies.

Pages