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
POW's picture
Replies 0

Marie just posted a very encouraging update about Dian on the "Off Topic" forum. Check it out!

Login or register to post replies.

Tim--MRF's picture
Replies 4
Last reply 6/3/2013 - 11:25am
Replies by: Tamils, BrianP, POW, out4air

I am at ASCO and have a ton of meetings with various companies today and over the next couple of days.  I thought I would provide a couple of quick updates, but first a heads up.

Tomorrow morning data will be presented on a study combining ipilimumab (Yervoy) with the BMS anti-PD1 drug, nivolimab. I am hearing very positive things about this study, and the data may be the most important information for melanoma to come out of this meeting.  Please pay attention over the next day or two; I think the news on this will be positive.

I met today with a company called Vical that has a drug called Allovectin.  This is a plasmid with an antigen that is injected into a melanoma lesion.  It serves to activate T-cells in the tumor area, which then get "trained" to attack tumor cells. They have a Phase III study compariing Allovectin with traditional chemotherapy.  The trial closed three years ago and the data is not yet mature.  Let me explain what this means.  In this kind of trial, the data is blinded until a certain number of "events" happen.  "Event" is a euphemism, in this case, for a patient who dies.  We know that patients on chemo survive about a year.  The fact that the data in this study has not yet matured means that a lot of patients are still alive after three years.  It is unlikely that many patients on the chemo are survived this long, which suggests that a fairly large number of patients treated with Allovectin are still alive after three years.  The company expects to have the data available by the end of September, so we will watch this closely.

I met also with a small biotech company with a drug that inhibits MET and VEGR.  Studies in melanoma are unclear, but it seems to be very effective in ocular (uveal) melanoma.

In a meeting with Prometheus we discussed current and future use of Interleukin 2.  IL2 curesabout 5% of patients with advanced melanoma, and has an overall response rate of about 15%.  A major challenge has been finding which patients are likely to respond.  They pointed to a small study showing very high response rates in patients whose tumor expresses a compound called PDL1.  Maybe some progress is being made in determining who is likely to respond.

I suppose the biggest news doesn't really relate to data, but more to the field in general.  This morning a poster session for melanoma.  This session has people with large posters (about 3 feet by 5 feet) stuck on bulletin boards and reporting news in different cancer fields.  In the past the melanoma poster session has been small and poorly attended.  Today they had at least five full rows of presentation--literally dozens--and the aisles were packed with doctors looking over the progress.  This, to me, shows how rapidly the field is moving foward.

I will try to report more tomorrow.

 

Tim--MRF

Login or register to post replies.

Littlea41's picture
Replies 5
Last reply 6/3/2013 - 11:06am
Replies by: aldakota22, Janner, POW, Anonymous

Just curious if this has happened to anyone else. In March 2013 I have my WLE done on my melanoma spot- with the margins coming back clean. About 2 weeks ago I noticed these weird little bumps around the site- right next to the cut scar. At first I thought they may be little pimples from all the creams I have been using so I tried to pop one. Needless to say its not a pimple and now the little bump is super sore. I noticed the other little bump has a black center. I thought maybe the mole was coming back? I don't think that's what it is- just curious if this has happened to anyone else. My other biopsy spots do not have these little bumps.

Login or register to post replies.

_Paul_'s picture
Replies 14
Last reply 6/3/2013 - 10:29am
Replies by: Linny, POW, _Paul_, kpcollins31, Jim M., Anonymous, NYKaren, hbecker

Hi All,

I have been digging around this site and the internet for the last few weeks trying to discover applicable treatment options following my recent local recurrence without much success. The recurrence presented as a small blue nevus in the original excision site. I had a more aggressive re-excision done (approx. 2.5" x 3") on the vertex of my scalp.

My oncologist (who is a melanoma specialist, Dr. Kim Margolin at SCCA here in Seattle) pretty much thinks I should watch and wait. I already completed the treatments of one clinical trial at Hopkins for their GVAX vaccine (it was disappointing that it recurred and makes me think that the treatment was unsuccessful).

I am hoping to draw on the amazing collective wisdom and knowledge of this site to find out what if any other treatment options are available. I don’t like to watch and wait, I want to be more proactive! So specifically, I am NED, 3c (according to my oncologist—because of the recurrence), and have not been tested for BRAF. I have looking over applicable clinical trials, but they all pretty much require evident disease, not NED.

Thanks in advance! – Paul.

To exist is beyond fantastic.

Login or register to post replies.

Be Not Afraid-God is with you always Stage IIIa

Login or register to post replies.

Be Not Afraid-God is with you always Stage IIIa

Login or register to post replies.

Be Not Afraid-God is with you always Stage IIIa

Login or register to post replies.

Be Not Afraid-God is with you always Stage IIIa

Login or register to post replies.

Anonymous's picture
Replies 1
Last reply 6/2/2013 - 9:43pm
Replies by: Phil S

Hi All,

 

After my husband died, I could not stay on MPIP. Since I have been back, I have seen many post from good friends.

 

However, I have not seen any post from KatyWI, or momof 2kids.

 

Please let me know how they are doings.

 

Thanks.

, Agnes

Login or register to post replies.

My husband is currently enrolled in a clinical trial for stage III & IV melanoma. The trial is through the Chao Cancer Center in Orange, California. It involves three weeks on chemo (paciltaxel) & one week off with daily oral dose of GSK's Pazopmib. Anyone else on this board hear or know first hand a out this trial? My husband is getting positive results so far, but, I would feel better if I knew more info. There's very little I can find on line since pazopmib is only currently approved for renal cell carcinoma. Reading some of the patient survivor stories has helped my a great deal. It's been a life saver. Since all we hear is - life extension, but no survival.
Thanks
Caregiver & wife of stage iV husband

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 6/2/2013 - 12:03pm
Replies by: ecc26

I had a couple moles removed and told I was lucky that it was pre melanoma but the doctor didn't really explain my path report the first time and I had to have them go in deeper until the margins were clear. I was told that I would have to be vigilant and watched closely could anyone explain to me the path reports?

A. Microscopic examination of the slides show an atypical melanocytic lesion with melanocytes in the epidermis and dermis consistent with a dysplastic junctional nevus. The margins of excision cannot be accessed with certainty.

B. Microscopic examination of the slides show a limited specimen showing atypical proliferation of melanocytes in the dermis with junctional component highly consistent with a junctional dysplastic nevus. Recommended reexcision with negative margins

Final Diagnosis
A. Consistent with a dysplastic junctional nevus The margins cannot be accessed with certainty. Therefore, I recommend re excision with negative margins.

B. dysplastic junctional nevus with positive margins Recommend re excision with negative margins

Here is the path report from re excisions

Sections consist of skin erosion, squamous hyperplasia, edema and mild chronic inflammation. Residual carcinoma or dysplasia is not identified in these sections. The margins are free of dysplasia/carcinoma.

Final Diagnosis
Residual dysplasia is not identified. Erosion, squamous hyperplasia, and mild chronic inflammation.

Can anyone kind of explain to me what all this means in a more understanding way? I am having to see a dermatologist about more suspicious moles that are changing and suspicious on other parts of the body. The two biopsies before from the same leg.

Login or register to post replies.

Amanda's picture
Replies 1
Last reply 6/2/2013 - 9:01am
Replies by: Amanda

Stubled across this the other night, thought some of you would like to see it.  Dr. Ribas from UCLA talking about pd1 and pdl1 and how the drug works.

http://youtu.be/f3md01ReYVA

-Amanda-

"Give thanks in all circumstances"

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 6/2/2013 - 7:54am
Replies by: Anonymous, Harry in Fair Oaks

It’s so confusing.  I read a Duke study (2003) that basically says up to 15% of thin lesions less than 1mm will recur/mestastasize; but, then I put my info into the melanoma outcome calculator and it basically says it “only” shortens my life expectancy by less than a year.  Which is it? 

Login or register to post replies.

Tim--MRF's picture
Replies 12
Last reply 6/2/2013 - 7:48am

The FDA just approved two new drugs for treating metastatic melanoma.  One is a BRAF inhibitor, similar to Zelboraf (vemurafenib).  The other is a MEK inhibitor.

The MEK inhibitor can be used in patients whose tumors do not have the BRAF mutation, and also is being tested in uveal melanoma.

The biggest use, though will likely be in combining the BRAF and MEK inhibitors.  Studies have shown that patients with the BRAF mutation who were treated with the combination had better response, longer response, and fewer side effects. 

Here is the press release:

http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm354199.htm

This is big news for the melanoma community, and a great step forward!  We still have a long way to go, but two new drugs is a good thing.

Tim--MRF

Login or register to post replies.

Pages