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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1derdog's picture
Replies 9
Last reply 3/4/2014 - 6:12pm
Replies by: 1derdog, POW, Anonymous

My husband's SUV is currently 1.8 from 7.8 seven months ago. Does anyone know at what level it's considered not active? The tumor in the lung decreased by 24.5% as well. Just trying to hold on to whatever we can at this point. It's been 8 months of hoping & waiting since my husband's original doctor told him he had only one year to live.
Thanks
Wife & caregiver.

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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.

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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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