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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DeniseK's picture
Replies 6
Last reply 8/8/2013 - 4:19pm

Hello Everyone,

Well this Melanoma is full of surprises.  I went in for my Gamma Knife this last Thursday thinking they were going to zap 5 of my 7 brain mets.  SURPRISE I had 18!!  He said he used double contrast so he could see every little tiny met I had so some of them were less than 1mm but I spent ALL day at the center with that Dang Frame bolted to my head, which by the way was the worst part.  So now I wait for 30 days and I should be brain stable, then another 30 days and I should hopefully be stable to go into a trial.  I'm getting my 3rd infusion of Ipi on August 15th with the last dose on Sept 5th.  This Thursday I will be switching from Z to Dabrafenib, really surprised my insurance covered it. 

The pain in my arm has subsided, just mild tumor pain which I hope is the t-cells attacking but havent noticed much if any decease in the size of the tumor.  It appears to be stable which I will take!

I'm hoping by 1st of October to be in trial for Anti PD 1 if my brain cooperates. 

I'm not having any severe side effects from combining Z with Ipi yet.  I'm taking a Reishi Mushroom supplement which helps protect your liver so I think that's helping.

Just wanted to update everyone on my treatment and share my surprises.

All my best to all,

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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brooke's picture
Replies 5
Last reply 8/8/2013 - 4:11pm
Replies by: POW, brooke, Becky

After all the wonderful responses and advice I received from everyone in my initial post, it seems that finding a melanoma specialist is key!

My husband is insured by Kaiser Permanente (an HMO in Colorado) and I know it can be very difficult to be accepted outside of their facilities.

I was wondering if anyone has had luck getting referred to the University of Colorado melanoma center or any other melanoma specialists with Kaiser insurance?

Thanks!

Brooke

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Curious to know if anyone has had experience with this drug. I suppose we all will find out soon with phase 3 results coming soon, but I've been curious to know of any success or failure stories out there. I haven't heard much about it since I was diagnosed 6 years ago. Just trying to keep up with everything.

thanks

Wetterhorn

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SaveMySister's picture
Replies 36
Last reply 8/8/2013 - 12:44pm
Replies by: SaveMySister, Linny, POW, Janner, Anonymous

Hello everyone,

I am desperately seeking  information to understand my sister's condition and ensure that she is getting the best treatment. She was diagnosed with Stage 4 Melanoma, which was determined based on a malignant tumor they removed in a lymph node under her arm.  She is waiting on the insurance company to authorize the tests she needs. But we are all so shocked, especially given that she has never had any suspcicious moles or lesions.  Has anyone ever heard of melanoma progressing to stage 4 without a whisper of a warning?  I don't understand how this is possible.

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JerryfromFauq's picture
Replies 1
Last reply 8/8/2013 - 10:37am
Replies by: JerryfromFauq

http://onlinelibrary.wiley.com/doi/10.1002/cam4.106/full

Table 1. PD-1 pathway–targeted agents in development

Target
Name
Description
Sponsor
Phase

PD-1
Nivolumab
Fully human IgG4 monoclonal antibody
Bristol-Myers Squibb
3

Lambrolizumab
Humanized IgG4 monoclonal antibody
Merck
3

Pidilizumab
Humanized IgG1 monoclonal antibody
CureTech
2

AMP-224
B7-DC/IgG1 fusion protein
GlaxoSmithKline/Amplimmune
1

PD-L1
BMS-936559
Fully human IgG4 monoclonal antibody
Bristol-Myers Squibb
1

RG7446/MPDL3280A
Monoclonal antibody
Roche/Genentech
1

MEDI4736
Monoclonal antibody
MedImmune
1

 

ALSO

Role of the PD-1 Pathway in the Immune Response

I'm me, not a statistic. Praying to not be one for years yet.

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Replies by: benp

http://onlinelibrary.wiley.com/doi/10.1111/pcmr.12038/full

The results of Landsberg et al. have important clinical implications if the phenotypic plasticity of melanoma cells in an inflammatory microenvironment is validated in a larger cohort of patients with melanoma after ACT. Down-modulation of gp100 expression and concurrent up-regulation of NGFR expression of melanoma cells in an inflammatory environment raises the possibility of using ACT with a cocktail of CAR-engineered T cells with dual or multiple specificities to target more than one melanoma antigen to ensure complete regression of tumor lesions. For this, a personalized approach of analyzing melanoma antigen expression on tumor cells before and after ACT therapy will be essential for the selection of CAR-engineered T cells with defined tumor antigen specificity. The proposed approach may enhance the long term disease-free survival of patients with metastatic melanoma.

************************************************************************************************

INTERESTING.  My question, "would aspirin improve the ACT/TIL success"? 

I'm me, not a statistic. Praying to not be one for years yet.

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Hello again,

 

Thanks so much for knowing I can come here and ask questions of you all.  My husband is in 2 weeks on his radiation treatment for his melanoma and lung cancer.  He has 3.5 weeks to go.  I understand it is about a month or more before they will do a PETscan again to check the status of the melanoma.  Just wanted to get your knowledge of standard (if any) timing of a PETscan after treatment is done.

thanks, Mary

Hugs to all, patients and care givers.

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gabsound's picture
Replies 13
Last reply 8/8/2013 - 3:20am

June 12, 2013 my beautiful, loving, and courageous wife Julie passed away.
 On Wednesday June 5th we discovered in the hospital emergency room she had suffered hemorrhaging from the brain mets discovered only weeks before. After spending several days in the ICU she came home under hospice care. She passed away in our home surrounded by loving family.

I haven't read all of her entries to this site, but I'm certain Julie offered many intelligent and loving words to the people with melanoma. That's who she was. A genuinely caring person. 
Every so often she would come to me crying her eyes out to tell me that someone on the melanoma site had posted losing a loved one to this disease. I could feel her pain. She felt the loss deeply.  


Julie received comfort from the kind and thoughtful comments from fellow melanoma patients and caregivers. Thank you all for your advice and encouragement these last couple of years.
Julie and I were married for 30 years. I am so proud and blessed to have known and loved this amazing woman.

Bill

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I'm me, not a statistic. Praying to not be one for years yet.

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Hi everyone - new here! :)   I have a question about "dissolving stitches" <-- only putting quotations around them because they aren't seemingly dissolving.  The stitches on my upper, left back - you can physically feel them through the skin.  You can feel them running from one side to another and it's been almost 4 months.  Surgery date was April 12th and they are defintely still there.  Now, the incision under my left arm is fine; I don't feel any stitches there.  

The only thing different is that obviously the skin on your back is tighter....maybe that is the problem?  It doesn't hurt at all, I'm not having any issues (other than of course the random sharp pains that you feel from the sites - but I wouldn't call that an "issue" per se).  

Has anyone else run into this with "dissolving" stitches?  How long did they typically take to dissolve?  

 

~Amber~

holymolymelanomy.blogspot.com/ 

"Everything happens for a reason"

holymolymelanomy.blogspot.com

 

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Kellie-T's picture
Replies 9
Last reply 8/7/2013 - 6:25pm

All,

I read posts but don't post that much here. Everyone has a story to tell and I'm thankful we have this forum to share because it helps me cope knowing you are out there and can relate to what is going on within all of us. On to my great news.....scans on July 25th (neck to pelvic CT and brain MRI) - "no evidence of metastatic disease present." Also, lab work continues to be very well. The doc put it like this, "18 months on treatment, scans are consistently great (NED) for the past year, much like remission".

I'm always cautious because this disease comes and goes as it pleases. I'm doing my part to stay healthy and enjoy life. I'm thankful for each and every day. The side effects are very tolerable (take six pills per day). My onc says that since I'm tolerating so well and my labs look great she sees no need in taking a break from treatment. Why mess with it when it is working so well?

Just wanted to share my little Z story.

 

Thanks,

Kellie

Life is not by accident. Make every minute count.

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POW's picture
Replies 10
Last reply 8/7/2013 - 5:47pm

I just found out about two clinical trials for Novartis' new BRAF inhibitor LGX818.  LGX818 is a lot like Zelboraf but it binds tighter to the BRAF protein so it might be harder for the tumor to develop resistance. You still have to have the BRAF V600E mutation, though.

Novartis is sponsoring 2 clinical trials-- one of LGX818 alone ( http://clinicaltrials.gov/show/NCT01436656 ) and one of LGX818 + the MEK inhibitor MEK162 ( http://clinicaltrials.gov/show/NCT01543698 ). The number of sites is still small, but new sites will be recuriting soon (including Moffitt).

The best news is that according to Dr. Gibney at Moffitt, LGX818 has been shown to have activity in patients who became resistant to Zelboraf AND  having a history of Zelboraf does not exclude you from this trial!

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VSlim's picture
Replies 9
Last reply 8/7/2013 - 5:42pm

Hi all, This is my first posting on the site. My husband was diagnosed two years ago (unknown origin, it showed up in the lymph nodes in his neck). He has been treated at Sloan Kettering with surgery, radiation, and most recently ipilimumab but the disease is still spreading. His doctor at Sloan is recommending their clinical trial of Bristol Myers' anti PD-1 (nivolumab) but it's randomized v. chemo. I've been searching for a nonrandomized trial of the Merck anti PD-1 in our area (New York) but so far no success. The clinicaltrials.gov site has twice given me hope--only to find that the trials are no longer enrolling. If anyone knows of a trial in our area, I'd very much appreciate knowing about it.

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Hi, I've seen others post their pathology reports here so I am hoping to get some help deciphering my own.  I was just diagnosed today with malignant melanoma in one mole.  I met with my dermatologist who *somewhat* explained the details of my diagnosis but was unable to tell me what stage I am in. She did explain that I will have the surgery to remove the entire mole and "that should take care of it."  I asked her if there was any indication that my cancer had spread or if there will be any follow up treatment.  She said there are no guarantees but "the odds are overwhelmingly in your favor."  I'll continue to have full body scans on a regular basis.  I asked what stage I am in and she sort of shrugged her shoulders and said "stage 1, I guess."  She gave me a copy of my report but did not offer to explain it.  Well, I am trying to focus on her positive attitude and her statement that the odds are overwhelmingly in my favor but would also like some feedback from this forum, if possible.  This is what my pathology report says:

 

"Malignant melanoma measuring 0.3 mm in thickness.

Comment:  There is a broad asymmetrical poorly circumscribed melanocyctic neoplasm composed of nests localized at the dermal epidermal junction and superficial dermis.  There is marked variation in the size and shape of the nests and areas of confluence.  There is no evidence of ulceration or vascular invasion.  The lesion extends to the lateral margins and a conservative reexcision of this lesion to ensure that it is completely removed would be judicious."  

 

I've looked at the stages chart on this site, which leads me to believe I am either Stage 0 or Stage 1A.  Can anyone clarify which one it is?  I've looked up the term ulceration but what exactly does vascular invasion mean?  What is the significance of the statement: "marked variation in the size and shape of the nests and areas of confluence?"  I will be in Mexico July 25-Aug 2 and discussed this with the dermatologist in relation to scheduling of the surgical procedure and recovery with stitches.  I don't want to put off a necessary procedure to remove cancer but I also do not want to be out of the country and have to deal with stitches, in case there are complications.  My dermatologist agreed that I would be better off not having stitches while away and said it should be fine to wait until after I return to have the procedure.  Incidentally, I have developed an infection at this same site from the scraping the doctor did last week for the biopsy and I am now on an antibiotic for the next 10 days.  She said the surgeon would not want to remove the mole until I am infection-free.  Is it safe to wait until early August for the mole removal?

Thank you for your time and advice.    

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Research August 01, 2013
 

 

 

Public Availability of Results of Trials Assessing Cancer Drugs in the United States

 

J. Clin. Oncol. 2013 Jul 22;[EPub Ahead of Print], TA Nguyen, A Dechartres, S Belgherbi, P Ravaud

 

 

 
TAKE-HOME MESSAGE

An analysis of cancer-related clinical trials assessing new drugs with a primary completion date between 2007 and 2010 reveals that almost 50% of trials still had no publicly available results 3 years after completion.

ABSTRACT

Purpose: To evaluate to what extent results of completed trials of cancer drugs conducted in the United States are publicly available at ClinicalTrials.gov, as required by the Food and Drug Administration Amendments Act (FDAAA), or are published in journals.

Methods: We searched ClinicalTrials.gov for cancer trials governed by the FDAAA: phase II to IV trials assessing drugs in the United States with a primary completion date between December 26, 2007, and May 31, 2010. For each trial, we also searched PubMed to identify the publication of results. We assessed the cumulative percentages of posted or published results over time by using the Kaplan-Meier method.ResultsWe identified 646 trials, including 209 randomized controlled trials (RCTs). At 12 months after completion of the trials, the cumulative percentages of trials with results posted at ClinicalTrials .gov, published in journals, and available either at ClinicalTrials.gov or in journals were 9% (95% CI, 7% to 11%), 12% (95% CI, 10% to 15%), and 20% (95% CI, 17% to 23%), respectively, and for RCTs, the percentages were 12% (95% CI, 8% to 16%), 5% (95% CI, 2% to 8%), and 17% (95% CI, 12% to 22%), respectively. At 36 months, these percentages were 31% (95% CI, 28% to 35%), 35% (95% CI, 31% to 39%), and 55% (95% CI, 51% to 59%), respectively, and for RCTs, they were 38% (95% CI, 31% to 45%), 32% (95% CI, 25% to 39%), and 56% (95% CI, 48% to 62%), respectively. Public availability of phase III trials was 15% (95% CI, 7% to 23%) at 12 months, 39% (95% CI, 27% to 49%) at 24 months, and 64% (95% CI, 50% to 73%) at 36 months.

Conclusion: Despite the FDAAA, results for nearly half the trials of cancer drugs in the United States were not publicly available 3 years after completion of the trials.

Journal of Clinical Oncology
Public Availability of Results of Trials Assessing Cancer Drugs in the United States
J. Clin. Oncol. 2013 Jul 22;[EPub Ahead of Print], TA Nguyen, A Dechartres, S Belgherbi, P Ravaud

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