CURE OM Forum


Welcome to the CURE OM Forum, a community bulletin board designed to address the needs of the ocular melanoma community – patients and caregivers alike. Here you’ll find answers to questions about OM diagnosis and treatment, and support from people from all stages, levels of treatment and from all over the world.

Questions about what to post? Visit our forum posting policies for guidelines.

Expand/ Collapse Topic
 
Replies By
View Topic
wes's picture
Replies 3
Last reply 8/13/2012 - 6:58pm
Replies by: edamaser, wes

Stage 2B nodular melanoma on my forearm.  I had resection and sentinel node biopsy and both were clean.  My question is where do I find a dr that specializes in Melanoma and or a treatment center that does so.  I am in the Cincinnati OH area. Thanks

Login or register to post replies.

Cleaned out my (admitedly teeny) IRA last week and bought a little used tent trailer to take the family camping on a regular basis.  More comfy than a tent on the ground, still small enough for them to tow and set up once I take the big dirt nap.  It has to be one of the least rational things I've done in a while, but I'm feeling rather giddy with the audacity of it all.  Thought I'd share.

--Tom

 

Challenge Accepted.

Keep Rowing!

Login or register to post replies.

margaretrogers57's picture
Replies 2
Last reply 8/8/2012 - 6:58pm

I have been looking in vane for anti-pd-1 trials that admit both ocular primary and former yervoy treatment.  If pd-1 is so good, why don't they have several trials and sites.  This is so frustrating to say the least.  Margaret

Login or register to post replies.

Is bevacizumab (Avastin) standard for choroidal melanoma-related exudative retinal detachment (ERD) following plaque radiation?

Thanks,

Julieanne

Login or register to post replies.

My husband has developed a sunburn like rash on his face from selumetinib.  Anyone have that and what can be done?  Thanks, Margaret

Login or register to post replies.

My husband has developed a sunburn like rash on his face from selumetinib.  Anyone have that and what can be done?  Thanks, Margaret

Login or register to post replies.

Julieanne's picture
Replies 13
Last reply 8/11/2012 - 10:08pm

If my primary physician is not at all familiar with OM (choroidal melanoma) and his suggested treatment following initial diagnosis and subsequent plaque treatment consists of blood testing only, what could I do to obtain a list of options regarding experts for follow-up treatment?

Login or register to post replies.

ThatHomeschoolDad's picture
Replies 1
Last reply 7/25/2012 - 7:24am
Replies by: RobC

Not for nothing, but if, as indicated at the Jeff conference, you want this to be a vibrant board and a realistic alternative to the Ocu-Mel list, you'll have to police spam.  You might also consider a new backend architecture that dramatically reduces the lag time after each submit.

--Tom

Keep Rowing!

Login or register to post replies.

Hey all,

 

Just read article where anti-pd-1 drugs work best in tumors with protein pd-L1?  Anyone know if ocular melanoma has this protein?  We were tested for gnaq/gna11 and do have gnaq mutation.  All help is welcomed.  We are starting mek trial with selumetinib next week.  Will let you know how that goes.  Margaret

Login or register to post replies.

Hey all,

 

Just read article where anti-pd-1 drugs work best in tumors with protein pd-L1?  Anyone know if ocular melanoma has this protein?  We were tested for gnaq/gna11 and do have gnaq mutation.  All help is welcomed.  We are starting mek trial with selumetinib next week.  Will let you know how that goes.  Margaret

Login or register to post replies.

eyecancerny's picture
Replies 6
Last reply 7/13/2012 - 4:46pm

Todays NY Times featured an article on the genetic testing for OM featuring Dr. Harbour.  Here's the link:

http://www.nytimes.com/2012/07/10/health/genetic-test-changes-game-in-cancer-prognosis.html?_r=1&pagewanted=all

For those of us that attended the CURE OM conference there's nothing new here, but for others there's some valuable information.  

Login or register to post replies.

We are still looking for an anti-pd-1 trial in nashville, atlanta, or close to chattanooga, tn.  Anybody know any that are in the works for 2012 or early 2013?  It looks like that bms would initiate more trials for ocular melanoma people who have progressed on yervoy as it seems the viable next step.  Please help us if you know of any.  thanks, Margaret Rogers

Login or register to post replies.

We are still looking for an anti-pd-1 trial in nashville, atlanta, or close to chattanooga, tn.  Anybody know any that are in the works for 2012 or early 2013?  It looks like that bms would initiate more trials for ocular melanoma people who have progressed on yervoy as it seems the viable next step.  Please help us if you know of any.  thanks, Margaret Rogers

Login or register to post replies.

It looks like substantially inhibiting the (re)activation of the stem cells of cancers is now possible by inhibiting the NOTCH pathways.

 

It was just done with leukemia in animals using a monoclonal antibody. The leukemia initiating cells did not survive. They were able, not only to get rid of cancerous cells, but also of the dormant stem cells starting it all.

 

I quote from the news release at UC San Diego:

Date: July 02, 2012 

Researchers Block Pathway to Cancer Cell Replication

NOTCH1 Signaling Promotes T-Cell Acute Lymphoblastic Leukemia-Initiating Cell Regeneration

Research suggests that patients with leukemia sometimes relapse because standard chemotherapy fails to kill the self-renewing leukemia initiating cells, often referred to as cancer stem cells.  In such cancers, the cells lie dormant for a time, only to later begin cloning, resulting in a return and metastasis of the disease.

One such type of cancer is called pediatric T cell acute lymphoblastic leukemia, or T-ALL, often found in children, who have few treatment options beyond chemotherapy.

A team of researchers – led by Catriona H. M. Jamieson, MD, PhD, associate professor of medicine at the University of California, San Diego School of Medicine and director of Stem Cell Research at UC San Diego Moores Cancer Center – studied these cells in mouse models that had been transplanted with human leukemia cells. They discovered that the leukemia initiating cells which clone, or replicate, themselves most robustly activate the NOTCH1 pathway, usually in the context of a mutation.

Earlier studies showed that as many as half of patients with T-ALL have mutations in the NOTCH1 pathway – an evolutionarily conserved developmental pathway used during differentiation of many cell and tissue types.  The new study shows that when NOTCH1 activation was inhibited in animal models using a monoclonal antibody, the leukemia initiating cells did not survive.  In addition, the antibody treatment significantly reduced a subset of these cancer stem cells (identified by the presence of specific markers, CD2 and CD7, on the cell surface).

“We were able to substantially reduce the potential of these cancer stem cells to self-renew,” said Jamieson.  “So we’re not just getting rid of cancerous cells: we’re getting to the root of their resistance to treatment – leukemic stem cells that lie dormant.”

The study results suggest that such therapy would also be effective in other types of cancer stem cells, such as those that cause breast cancer, that also rely on NOTCH1 for self-renewal. 

“Therapies based on monoclonal antibodies that inhibit NOTCH 1 are much more selective than using gamma-secretase inhibitors, which also block other essential cellular functions in addition to the NOTCH1 signaling pathway,” said contributor A. Thomas Look, MD of Dana-Farber/Children Hospital Cancer Center in Boston. “We are excited about the promise of  NOTCH1-specific antibodies to counter resistance to therapy in T-ALL and possibly additional types of cancer.”

In investigating the role of NOTCH1 activation in cancer cell cloning, the researchers showed that leukemia initiating cells possess enhanced survival and self-renewal potential in specific blood-cell, or hematopoietic, niches: the microenvironment of the body in which the cells live and self-renew.

The scientists studied the molecular characterization of CD34+ cells – a protein that shows expression in early hematopoietic cells and that facilitates cell migration – from a dozen T-ALL patient samples.

They found that mutations in NOTCH1 and other genes capable of promoting the survival of cancer stem cells co-existed in the CD34+ niche.  Mice transplanted with CD34-enriched NOTCH1 mutated T-ALL cells demonstrated significantly greater leukemic cloning potential than did mice without the NOTCH1 mutation.  The mutated cells were uniquely susceptible to targeted inhibition with a human monoclonal antibody, according to the scientists.

Additional contributors to the study include Wenxue Ma, Daniel J. Goff, Ifat Geron, Anil Sadarangani, Christina A. M. Jamieson, Angela C. Court, Alice Y. Shih, Qingfei Jiang, Christina C. Wu, Kristen M. Smith, Leslie A. Crews, Ida Deichaite, Sheldon R. Morris and Dennis A. Carson, UC San Diego Department of Medicine and Stem Cell Program, UC San Diego Moores Cancer Center; Alejandro Gutierrez, Dana-Farber/Children Hospital Cancer Center in Boston; and Kang Li, Ping Wei and Neil W. Gibson, Oncology Research Unit, Pfizer Global Research and Development, La Jolla Laboratories, San Diego."

 

Of course anyone with OM woudl be asking themselves if the NOTCH signaling pathways are also inportant in the proliferation of uveal melanoma (our cancer) stem cells. The answer is: YES! That was shown in a published study in February at Johns Hopkins. See http://www.ncbi.nlm.nih.gov/pubmed/22228632

 

It looks like our researchers are zooming in closer and closer to deal with the real culprits of many cancers. The specific cancer stem cells are the factories that need to be shut down.

 

Can't wait for the trials starting on the NOTCH inhibitors. Hopefully our doctors will catch on with this and start NOTCH inhibitor trials with uveal melanoma patients.

 

Maybe you guys could start asking questions about this with your doctors to make it visible for them? Can't hurt asking.

 

Peter L in NH

 

Login or register to post replies.

Shelby - MRF's picture
Replies 1
Last reply 6/26/2012 - 5:29pm
Replies by: ThatHomeschoolDad

Posted on behalf of edamaser:

Delayed Systemic Recurrence of Uveal Melanoma
Kolandjian, Nathalie A. BA; Wei, Caimiao PhD; Patel, Sapna P. MD; Richard, Jessica L. ANP; Dett, Tina FNP; Papadopoulos, Nicholas E. MD; Bedikian, Agop Y. MDAbstract

Context: Metastatic uveal melanoma recurrence after >=10 years is not well studied in the clinical literature. This study describes the clinical characteristics and natural history of patients with delayed tumor recurrence.

Objective: To describe the characteristics of patients with delayed systemic recurrence of uveal melanoma and the natural history of the disease after recurrence.

Evidence Acquisition: This is a chart review of patients treated between 1994 and 2008 at The University of Texas, MD Anderson Cancer Center for uveal melanoma whose disease recurred >=10 years after treatment of the primary tumor.

Results: Of 463 patients treated for metastatic uveal melanoma, 305 developed systemic recurrence within 5 years from the time of diagnosis of primary melanoma, 97 developed systemic recurrences between 5 and 10 years, whereas 61 patients developed metastasis after >=10 years. The interval between primary to first systemic metastasis was a significant independent predictor of survival time from first systemic metastasis. The median survival time for patients with delayed metastatic recurrence after >=10 years was significantly longer than for patients who had intermediate or early systemic recurrence. Levels of lactate dehydrogenase, serum alkaline phosphatase, serum albumin, age, M-stage, and performance status at time of recurrence, as well as sex were also independent predictors of survival time from systemic recurrence.

Conclusions: Longer time interval between primary and first systemic metastasis is significantly correlated with prolonged survival. Patients who survive >=10 years without tumor metastasis after treatment for primary uveal melanoma cannot be considered cured. Prognosis remains poor for patients with metastatic uveal melanoma.

(C) 2012 Lippincott Williams & Wilkins, Inc. 

Login or register to post replies.

Pages