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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POW's picture
Replies 6
Last reply 2/4/2015 - 12:27pm
Replies by: Anonymous, BrianP, MoCedar, JustMeInCA, kpcollins31, JoshF

Some of you may remember Don Lee of Worcester, MASS. Don was diagnosed out of the blue with Stage IV including brain mets almost 2 years ago. Don and his wife Janet fought valiently. He tried every available treatment and benefitted from most of them. Surviving 2 years with a widely disseminated melanoma is remarkable and he made the most of his time. He got to dance at one daughter's wedding and to see his first grandchild born and begin to walk. He enjoyed walks on the beach with Janet, downsizing to a gorgeous condo with no upkeep, and celebrating their 40th wedding anniversary and Cecelia's first Christmas. But eventually the cancer won out. He passed last Thursday. Here is a very nice obituary for Don Lee online. 

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Eileensulliv's picture
Replies 10
Last reply 1/20/2015 - 1:30pm

In 2006 I had a rather quick battle with melanoma in my back. I had WLE and SNB done at University of Chicago Hospital and was considered cancer free. In October 2014 the area between my melanoma scar and the scar under my arm from the SNB swelled up, and was red and painful. I have lymphedema in both arms, so reaching the area is difficult. I saw my oncologist who said it could be an abscess, so she prescribed antibiotics. She said to be safe I should have a CT. The CT was done about a week later, after antibiotics already took effect. The technician was commenting on the lump of my melanoma scar, and I told him that is not where the pain was, it was off to the left. When I got home and saw where he put a mark for the scan, I called to see if it was done in the right spot. My onc sent me to see a surgeon, and the surgeon said the CT only showed scar tissue. She felt around my scar and said everything was fine. I told her my scar and my back feel "tight" lately, and that I felt like something was there. She said I was fine. Two weeks later, the area starts to swell again. My onc was out of town, so I saw the nurse practitioner, after they started me on a different antibiotic for two days. I was very firm that I needed some answers, and wanted this thing taken out! The nurse practitioner definitely felt something, and ordered ultrasound. She said it could be a lipoma that is just getting irritated and infected because it is right on my bra line. The ultrasound technician took some pictures of it, and my onc said I should see the surgeon to have it biopsied and removed. I finally got in to see the surgeon after the holidays, and she did a core needle biopsy, which came back as melanoma. They sent me for a PET scan, and the onc gave me the results two days ago... The spot in my back lit up, as well as in my bowel. She said I should see Dr. Sharfman, a melanoma specialist at Hopkins. Yesterday the surgeon called and was discussing the scan results with me when she said the spot in my lung... What spot in my lung!?! Apparently my onc failed to mentioned there is a spot in my lower right lobe that just barely lit up, and could be nothing at all, or it could be something. I know my onc and the surgeon are very well respected doctors here, but I have really lost faith in them... Am I crazy? I feel like this could have been caught two months ago! And has anyone been treated by Dr. Sharfman? I know Hopkins has a strong melanoma program, and everything I have been able to research on him seems very positive.  Sorry for the long post, but I am really having a hard time believing my doctors now, and am wondering if I am justified. 


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rick1981's picture
Replies 9
Last reply 1/21/2015 - 8:36am

Hi all,

I posted this week about my wife's (new) brain mets after a double seizure this week. They came on the day of the 3rd Pembro infusion.

We had a feeling Pembro was working as my wife has been very ill in early December after her previous treatment failed (new mets on scan of December 3rd vs October 27th; LDH moving up from 400 in October to 1300+ in December) and she started feeling significantly better as of her 2nd infusion on Christmas Eve - she went from bed ridden to being full of energy. LDH also dropped back to 600. Seemed like Pembro worked right away, which was what our onc also though.

However, we just read the full blood analysis that was done on January 14th, the date of her 3rd infusion, so basically showing the impact of 2 Pembro treatments. LDH has shot back up to 1300. So in the accompanying letter it seems that our MD is now unsure if Pembro is actually working (the new brain mets may contribute this his thoughts - although they could have also arisen during the "free fall" period between treatments).

Any thoughts on this?

How can LDH drop so quickly, my wife feel so much better within 3-4 weeks of Pembro, continue to feel good at six weeks and then see blood values that indicate it may not be working after all?

Apart from scans, what are other ways to get an indication of PD1 is working? Any other blood values to track?




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chowmene's picture
Replies 2
Last reply 1/18/2015 - 5:12pm
Replies by: AnitaLoree, Anonymous

can a mole between shoulder blades push on nerves in neck, and make it feel like i'm might have an aneurism? just feels that way. curious tyvm. Mark. 

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Anonymous's picture
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,


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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!!!!

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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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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.

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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.



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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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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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Anonymous's picture
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,


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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.


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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!!



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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's just hard when you're stuck in the unknown for 3rd time. Thanks to all....


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

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