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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Be Not Afraid-God is with you always Stage IIIa

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Be Not Afraid-God is with you always Stage IIIa

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Be Not Afraid-God is with you always Stage IIIa

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Be Not Afraid-God is with you always Stage IIIa

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Tim--MRF's picture
Replies 4
Last reply 6/4/2013 - 1:19am

This was a great day for melanoma at ASCO.  The highlight was a session, with several presentations, on PD1 drugs.  The Merck PD1 drug, labrolizumab, had an overall response rate of 38%.  In the best dosage of the trial, half of patients saw tumors shrink on this drug.  Compare this to ipi, in which the response rate is less than 20%.  Another researcher reported on combining the BMS PD1 drug, nivolumab, with ipilimumab.  Response rates in the best arm were, again, over 50%.  More than 40% of patients saw their tumors shrink by 80% or more.  

One of the challenges of using ipi has been that responses can take a long time to develop.  This means that ipi is too slow for patients with aggressive tumors.  In combination, however, the responses were much faster--most within 12 weeks.  I can report that the feeling in the room was nothing short of giddiness.  All the melanoma researchers were grinning ear to ear in hearing this news.

Both the Merck drug and the "novi"+ "ipi" combo will be used in larger trials, with a good number of slots available.  Based on the data, however, a lot of researchers feel that the FDA should approve these drugs with little or no additional research.  

Another session reported on brain metastases.  Perhaps the best information is that BRAF inhibitors have an impact on brain mets for patients wtih BRAF mutation in their tumor.  

A lot of good news for the fight against melanoma, and hopefully more to come in the future.

Tim--MRF

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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

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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

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admin's picture
Replies 1
Last reply 6/4/2013 - 2:23pm
Replies by: W.

A number of important melanoma research updates have emerged from the American Society of Clinical Oncology (ASCO) annual meeting, including a report on Sunday, June 2 about the combination of ipilimumab and nivolumab. Both drugs are designed to engage the immune system in fighting melanoma. In the study, the combined drugs helped shrink tumors in 38% of patients overall. One arm of the study generated a 52% response rate in patients. The study has been published online in the New England Journal of Medicine.

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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"

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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

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jaketheflake's picture
Replies 5
Last reply 6/1/2013 - 6:32pm
Replies by: jaketheflake, POW, Mickey n Jo, Anonymous, lunchlady

oh  god forgive me for complaining,my husband has stage 3 melanoma,diagnosed a year and a half ago,interferon,then mets in lung and one tumor in brain,startted ippi a few months ago ,3 treatments,newly discovered 2 tumors in brain,month of steriods,have 3 weeks to go,had cyber knife thursday and friday,  i have noticed in the past month,prior to diagnosis of new tumors,he gets in spastic fits,very mean,it can be scary,he would get a lil mad,but not like this!!!!!   i have been down this road 16 to 17 years ago with my father who had lungcancer that spread to his liver and passed away,my dad was mean anyway,but it was 10X as worse when he had cancer, i am not a mean or unsympathetic person, i cannot imagine how my husband feels or what is going thru his mind, and yes , he has every reason th be mad.   He has recently started being very,very mean in the past month,it is very hard to take,and at times i am scared,does anyone kno or any ideas if its the brain tumors causing this behavior or the ippi?  just wondering if anyone has experienced this themselves or with their spouse?  any advice would be greatful!!!!

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mark1101's picture
Replies 1
Last reply 6/1/2013 - 5:13pm
Replies by: Anonymous

Had my last infusion in the trial of ipilimumab for Stage III just about 3 weeks ago and still feeling fine...yay!  Some trouble with skin rash rearing its annoying head following each treatment, but prednisone and atarax seem to stop that problem in its tracks.  Took 4 campazines the entire 12-week period so not much trouble with GI tract in general.  I conasider myself lucky as to the my system weathering the drug well.  Now the acid test...did it keep the melanoma at bay as effectively...had a clear scan going in after lymphadectomy.  Next scan is scheduled for next Thursday so am hopeful that will also be clear.  Keeping my fingers crossed and praying about that.  Sorry to blather on, but wanted to share my good news with all of you terrific people on this board.

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Amanda's picture
Replies 6
Last reply 6/9/2013 - 10:42am

So my boyfriend is feeling some fatigue for the first time since starting pd-1.  Also, his chest wall tumor which is his largest is causing him some pain and it's gotten inflammed/swollen looking (this is also the tumor that he has had 3 biopsies on so far for the trial).  All his other tumors that have been also shrinking arn't inflammed  or painful, just this large one.  The tumor is and has been really soft as it's dying.   I'm hoping it's the accumulation of his immune cells making it so sensitive and larger.  He's been responding exceptionally well thus far, and his scans done a couple weeks ago were awesome, with everything shrinking.  He's had 5 infusions so far, hoping that the fatigue is from his body working hard to eliminate this horrid cancer.

I know people have had inflammation of tumors on yervoy, anyone had this on pd1?  I'm probably going to email his trial coordinator toinght to give them a heads up, and see what they say.

-Amanda-

"Give thanks in all circumstances"

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Alanamaranto22's picture
Replies 19
Last reply 6/4/2013 - 12:17am

I am very upset that my Oncologist/Surgeon has me waiting so long before starting active treatment of this. I previously posted my pathology report earlier this week. The pathology report revealed a very large Polypoid Ulcerated Nodular Melanoma. Clark Level IV-V (pathologist couldn't accurately label due to the size and depth), Breslow Depth greater than 5mm (again too large to give an accurate number). It has invaded my lymphovascular system, the mitotic rate is highly variable with up to 5 per square mm. So far the pathology staging is T4b. I had the excisional biopsy done on May 13, 2013. Since then this tumor is already growing back on the surface and its only been two weeks. To me this is more severe than I originally thought. I have been in daily contact with my primary who's trying desperately to get me in now. I have Medicare so I'm wondering if it has anything to do with that?

Anyhow, my other concern is the order of treatment he has planned. He first wa in nts to go in and remove the rest (if possible) of the cancerous tissue and at least 2mm of good tissue from the site of origin. This will be very invasive due to the tumor being on my inner ankle where there is very little skin and tissue. I'm wondering why he does not want to do the PET, CT and MRI Scans and blood work first before possibly taking my foot off?

Due to the invasive surgery and his opinion of certainty of at least a few of the nodes being positive for invasion, why not do the testing first, then proceed with the surgery and SNB? It kind of seems backwards if you ask me. They are so concerned because of how rapidly its growing, I don't understand the waiting period?

Also, what can I expect as far as treatment? Do they do chemo first or put me on a drug like all the ones you are discussing? I just want to start preparing myself mentally. He already said they would have me on treatments of some sort after the surgery so I just want to get an idea of what I'm in for. Do the treatments make you sick, cause hair loss, etc.? And I know many probably won't or don't want to answer this but I would greatly appreciate your own knowledge and opinion on this: If this has metastasized to distant organs (worse case scenario) what are the average survival rates? I'll be happy if its at least a year. I'm hopeful and I'm remaining positive but its information I would like to know. I am a Christian and I truly believe if God wants me home then I'm okay with that. I just want to plan for the worst and pray for the best. I have gone through quite a bit in a year and I think someone is trying to tell me something. Two different cancers in a year, fibrocystic disease and tumors on my brain, kidney, cervix and tongue, as well as having my third major back surgery all in a 15 month period is a sign of some sort. I am by no means giving up but I believe its time to get my affairs in order. I have to work on getting a Will and trying to find all my life insurance policies.

Again, I'm not trying to be negative or give up by any means but tomorrow is never guaranteed to anyone with or without cancer and I just don't want to have to worry about not having those affairs in order for my kids and grandkids. And I really would like for info on what to expect as far as treatment.

Thank you for taking the time to read this. Your input, personal info and knowledge would truly help me to mentally prepare for what I'm getting ready to fight. God Bless you all and I'm so very greatful for this site and having people like myself to talk to and you're all truly an inspiration to me.

With Love,
Alana

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