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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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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Anonymous's picture
Replies 3
Last reply 6/1/2013 - 12:27am
Replies by: Tennisgrl, jcmp

I have had 4 treatments of IPI followed by 6 weeks of radiation followed by 15 taxol/ carboplatin treatments.
I am now stable by ONC .
Looking for anyone with similar history to share information.
Thank You

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Anonymous's picture
Anonymous
Replies 7
Last reply 6/1/2013 - 5:10pm
Replies by: ecc26, mark1101, hbecker, Janner, Anonymous

Hello,

Thank you for reading my post. I am kind of at a loss and feeling very scared. I was recently diagnosed with melanoma on my head/neck, and have since checked every other square inch of my body. Well, I discovered another spot, (getting it looked at this coming week) it has all the characteristics, and is pretty well raised. It is on my left side love handle.... I remember it being there a long time ago (a couple years) and it started as a small freckle..

So here's my question:

Not too long ago, (maybe 6 months, during the winter) I went through a period where I was really sick. Both sides of my groin nodes were huge, hard, swollen, and too painful to even walk... This has since subsided, but have continually maintained other symptoms of: Abdominal pain and cramping, extreme bloating and gas, big time gain in abdominal gurth (like not fat, but bigger around just in the abdominal area), had a week of pure constipation, now am having semi regular BM's, but loose and thin, (maybe a tiny bit of blood here and there, in the crevices of the stools, not all the time), decreased appetite but increased weight, extreme fatigue, headaches, sharp pains behind my eyes (almost every day), pinched nerves and muscles throughout, but especially in my back and shoulders, and extremely abnormal vaginal bleeding...seems like every day... there are more days of bleeding than not!!

This has all become frustrating, and worrysome. I try not to make a huge deal of it, because maybe I wouldnt notice these things is i DIDNT have melanoma on my mind, but there are a ton of new symptoms just within the last 6 months or so...

I AM getting this new spot checked out within a week, but just curoius in the meantime if anyone else thought this was outrageous, or possibly all in my head.... 

 

Help!?

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Littlea41's picture
Replies 1
Last reply 5/30/2013 - 10:17pm
Replies by: Janner

Hello. I was diagnosed with melanoma back in march an found out I was pregnant 3 days later. We lost our son from a placenta abruption at 16 weeks. So far there are no answers, nothing pointing to what caused this. I'm just curious if anyone has heard of this happening to melanoma patients. I'm still waiting in the pathology from the placenta (its been over 3 weeks) which tells me they either lost the sample or they found something bad and need to confirm or do other tests.

Any help on this topic would be greatly appreciated as I can only find a couple publications on melanoma and the loss of a pregnancy.

Andrea

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out4air's picture
Replies 15
Last reply 6/2/2013 - 7:39am

Any experiences, suggestions, etc anyone can give to us would be appreciated regarding your experience with taking Zelboraf 240mg. Started at 4 in am and 4 in pm but had bad reaction so now on 3 in am and 3 In pm with 10 mg of prednisone daily. On 3rd day and no problems yet.

I gather this treatment is not a cure, just a drug to stop growth and wait for a cure to be invented, is that pretty much what we are looking at with this drug?

We are in it to win it!

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Yesterday’s FDA approval of two new treatments for metastatic melanoma is exciting news for the melanoma community. But, we still have much work to do in terms of providing additional treatments for people fighting advanced melanoma. If you are interested in helping the Melanoma Research Foundation call attention to these important issues by sharing your story with the media, please take a few minutes to complete a short survey by visiting: http://www.surveymonkey.com/s/6JY5R8C.

Thank you for your consideration.  The MRF will be in touch with you as media opportunities arise that match your experiences.  If you have any questions about this survey, please contact the MRF’s communications manager Lauren Smith at lsmith@melanoma.org or 202-347-9675. 

With many thanks,

The MRF Team

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Melissag0624's picture
Replies 6
Last reply 6/1/2013 - 6:06pm

Hello all, 

 My name is Melissa and was just recently DX with stageIIIA melanoma at the age of 27.  It all started with a mole on my upper left shoulder. I had a WLE and SLNB performed and it came back with clean margins and only 1 LN was positive. I have a melanoma specialist that I am seeing in my hometown who has reassured me, and gave me the impression that my chance of survival are good and the chances of reocurrance are low. I did go see another melanoma specialist in my hometown for a second opinion only to find out that these two doctors work particularly close ( they used to be in the same office) and he agreed with her recommendations. I am currently on a clinical trial that monitors the lymph nodes by ultrasound rather than doing the removal of the lymph nodes in the effected area. My concern is this: I feel like I didnt get a fair second opinion because these doctors work so closely together and often share patients. My mom offered to send me to the Mayo clinic in minnesota and in a way I feel like it is over kill to go because I feel like they will just tell me the same things that my other doctors have said.  After the SLNB came back positive, I did have a once over, MRI of brain, CT scan of Pelvis and abdomen with and with out contrast. ( there were two incidental findings that are not related to melanoma--UPJ obstruction and a hemangioma on my liver) So I guess I would like to know what others would do in my position. My mom thinks I am under reacting and I feel like going to the mayo clinic is over reacting. ???

 

Thanks,

Melissa 

<3 Melissa

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Hi,

I have a friend who is dealing with Brain Mets. Previous mets were treated with radiation but know seem to be growing again so he needs a neurosurgeon.

He lives in California but would travel anywhere to be treated by the "best" neurosurgeon.

I would appreciate any recommendation or feedback on your experience with your Neurosurgeon.

Thank you for your help.

James

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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? 

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