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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Anonymous's picture
Replies 10
Last reply 1/20/2015 - 9:03am
Replies by: Gene_S, Jacqueh27, rick1981, JustMeInCA, Anonymous

My Daughters levels have gone from 8000 to 592 before her third infusion. She has liver tumor. She finished her fourth infusion last week and will have scans in four weeks. Any YERVOY responders have the same type of indicators it was working?

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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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Jsneathen21's picture
Replies 4
Last reply 1/18/2015 - 11:35pm

I had a sentinel node biopsy on January 13th almost 6 days again now also had a skin graft on my lower shin so my calf and foot are wrapped up in a splint.. My question is was anyone achey at all? I'm not really swelling at all but my upper thigh muscle is super achey ... I thought this was weird.. Do you think it is muscle swelling from surgery!? I looked up Lymphadema and I am pretty certain it's not that as I said the swelling really isn't even there.. Just kinda achey.. Thanks in advance hope your responses kill some of my anxiety !

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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.



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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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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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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 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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_Paul_'s picture
Replies 11
Last reply 1/18/2015 - 11:10am

Here is an update for anyone considering TIL. I just met with Dr. Lee at the Seattle Cancer Care Alliance about enrolling in the "Tumor-Infiltrating Lymphocytes (TIL) for Metastatic Melanoma (2643)" trial (

I specifically asked about mortality rates, since some people on this board have expressed concern about the treatment itself killing people. Dr. Lee assured me that none of the patients she has seen in Seattle have died as a result of the treatment. As many of you know the treatment itself involves traditional chemotherapy to destroy the bodies ineffective TIL cells, followed by an infusion of lab grown TIL cells, followed immediately by a series of IL-2 administrations to “feed” the new TIL cells. The entire process is done in the hospital and the patient is transferred to the ICU for the IL-2 part of it. Testing is done in advance to ensure the patient is healthy enough to undergo treatment.

The great thing about Seattle is that the lab grown TIL cells are cryogenically preserved until the patient needs them. So in my case, where Yervoy appears to have halted the progression of my disease (except for one tumor which is growing, but which will also be harvested to extract the initial TIL cells from), they will wait until there is progression before moving to Step 2, which is the actual treatment I outlined above.

My original plan was to try Yervoy, and move to Opdivo or Keytruda if it didn’t work. But my new plan is to wait and see if I get a durable response from the Yervoy, then try TIL if that fails, and then try anti-PD-1 if that fails. The reason is that you have to be fairly healthy for the TIL. If I left TIL for last, I might not be healthy enough by then to endure the treatment.

I gotta tell you though, that it is pretty awesome to have any choices at all! I am a skeptic at heart, and when I first heard people saying stuff like “this is the best time to have melanoma” but had already seen the (now outdated) survival statistics, I thought, yeah right, this is just stuff people say to keep our hopes up but the reality is that I am doomed, plain and simple. Well that skepticism is not justified. The stuff people are saying is true. I’ve been converted. I’m a believer. Woohoo!

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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?



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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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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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