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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beccia1's picture
Replies 1
Last reply 10/2/2011 - 5:11pm
Replies by: Anonymous

how long does it take to get results from genetic testing

 

 

beccia1

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Anonymous's picture
Anonymous
Replies 2
Last reply 10/2/2011 - 7:00pm
Replies by: ValinMtl, MariaH

While researching Dave's next step for treatment, I came across this study for MDX-1105.  I'm wondering if anybody out there is on this trial....NCT00729664 

On a side note, Dave's vision improved (after being blind for a week after IL-2) but everything still looks "dark".  He's on 80mg of prednisone and was hoping to stop taking it after his vision returned to normal, but that doesn't seem to be the case yet.  He's still unable to drive.  Even if he does end up being a responder to IL-2, he probably won't do another course.  He goes for scans on 10/25 and  sees Dr. Khushalani on the 10/26 for his results.  Who knows, maybe if he had a good response we can keep it stable for awhile and at least get Dave through hunting season without having to do any treatment.  Of course, that depends on his vision improving as well.  Ugh...

Best wishes to all,

Maria

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kim2712's picture
Replies 4
Last reply 10/11/2011 - 4:18pm
Replies by: kim2712, Rebecca and Bob, Anonymous

Hi James,

I remember awhile back when I posted about the pain of losing my son you had said to email you if I wanted to talk. I can't find your email address. Mine is kim.hartzell@hotmail.com if you could please email me sometime.

Thank you,

Kim

Mom to Erik 6/11/1985-5/22/2011

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JerryfromFauq's picture
Replies 5
Last reply 10/3/2011 - 3:50pm

This is a great article that discuses melanoma signaling pathways, the molecular drivers of this disease, molecular subtypes and developing proposed treatment guidelines for each subtype, including specific assays, drugs, and clinical trials. labs that conduct various tests, etc.  This information is written at a laymans level and is fairly easy to follow.

 Drug [<>] Company [<>] Status [<>] Clinical Trial [<>] Target

I have only posted the Abstract here.  The real meat is at the URL.

http://mmdm.cancercommons.org/ml/index.php/A_Melanoma_Molecular_Disease_...

I. Abstract

While advanced melanoma is one of the most challenging cancers to treat, recent developments in our understanding of the molecular drivers of this disease have uncovered exciting opportunities to guide personalized therapy decisions. Genetic analysis of melanoma have uncovered several key molecular pathways that are involved in disease onset, progression as well as prognosis. These advances now make possible classification of melanoma into molecular subtypes (unlike traditional histological subtypes), with proposed treatment guidelines for each subtype, including specific assays, drugs, and clinical trials.

This paper outlines such a 'molecular disease model' that can be used by both researchers and clinicians- clinicians could use it a guide in their therapy decisions and contribute to it with real-life patient outcomes data whereas researchers could refine molecular subtypes based on their findings and use clinical outcomes data to guide their research. This 'dynamic' paper will reflect latest scientific, clinical and technological advancements by providing a rapid process for submission, contextualization and dissemination of information and data.

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

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JerryfromFauq's picture
Replies 2
Last reply 10/3/2011 - 1:59am
Replies by: JerryfromFauq, Anonymous

This is a great article that discuses melanoma signaling pathways, the molecular drivers of this disease, molecular subtypes and developing proposed treatment guidelines for each subtype, including specific assays, drugs, and clinical trials. labs that conduct various tests, etc.  This information is written at a layman level and is fairly easy to follow.

 Drug
[<>] Company
[<>] Status
[<>] Clinical Trial
[<>] Target

I have only posted the Abstract here.  The real meat is at the URL.

http://mmdm.cancercommons.org/ml/index.php/A_Melanoma_Molecular_Disease_...

I. Abstract

While advanced melanoma is one of the most challenging cancers to treat, recent developments in our understanding of the molecular drivers of this disease have uncovered exciting opportunities to guide personalized therapy decisions. Genetic analysis of melanoma have uncovered several key molecular pathways that are involved in disease onset, progression as well as prognosis. These advances now make possible classification of melanoma into molecular subtypes (unlike traditional histological subtypes), with proposed treatment guidelines for each subtype, including specific assays, drugs, and clinical trials.

This paper outlines such a 'molecular disease model' that can be used by both researchers and clinicians- clinicians could use it a guide in their therapy decisions and contribute to it with real-life patient outcomes data whereas researchers could refine molecular subtypes based on their findings and use clinical outcomes data to guide their research. This 'dynamic' paper will reflect latest scientific, clinical and technological advancements by providing a rapid process for submission, contextualization and dissemination of information and data.

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

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ValinMtl's picture
Replies 24
Last reply 10/3/2011 - 12:48am

Well, went back to NIH with a great deal of trepidation!!  GOOD NEWS!!!  After 3 weeks, there has been 27% reduction based on the nodules studied and their diametres.  Did I get that right?  My doctor will provide me with a written report since at times like this it's difficult to understand.  I can certainly see the improvements.  My doctors tells me overall there is a 62% improvement if you do not focus on only the 'analyzed part'.....anyways I was going to wait until I had a proper written report from the doctors on Monday but I've waited long enough, I was petrified to say anything and now I will sing it to the top of the hills.  More detailed info will follow.

It is sooo nice to see something positive for a change.  To show how little is understood about this program, I had a little bit of a bad turn back in Montreal and ended up in the hospital for one day (halucinations)...one oncologist took my son (my son..NOT me nor my husband!!) aside and asked what were his intentions for his mother since she had only succeeded in 2 of 12 bags of  IL-2 and that is not success (well I've got the famous itch right now!!)...He did not take in to account the millions of good white cells (4.28 milllion) re-injected into my body nor stem cells nor radiation....Go figure.  I told Shaun to ignore his comment.

Dr. Hessman was my fellow and both Dr. Yang and Dr. Phan came by to congratulate me and apparently Dr. Rosenberg is just delighted.  They told me I am healing faster (ouuchh, my whole body aches especially the lymphedema leg still hurt) than many because of my determination and positive attitude....When I was being offered morphine and palliative radiation in Canada, I knew it was time to take things under my own wing. THANK YOU WARREN, your e-mail was such a God send and wonderful timing.  I had a date for palliative radiation in left groin within a day...I stopped it and spoke to NIH first.   IT WAS A DEFINITE DO NOT DO THAT UNTIL you see us.  Thank goodness.  If they had, they would not have been able to remove an area unafffected by radiation.  Hard qualifications all..in all..  BUT got through and was randomized to TBI side of trial same as Warren 5 years ago.

Combination treatment might be the wave of the future.  I had yervoy which I responded to very well but left behind two growths in left groin and other growths...TIL just might have killed the rest of the evil one!  One can pray.

God bless

And in honour (both past and present) of all our dear friends that fought so hard and volunteered for us to reach this new level of treatment for stage IV.   Val

PS  Warren how are you doing? I pray they have come up with a treatment for your Merkel cell carcinoma.  Val

Live Laugh Love Nothing is worth more than this day!

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Beckyinsandiego's picture
Replies 10
Last reply 10/2/2011 - 8:57pm

My original melanoma was back in 1999 and since then I have had 4 recurrences. I am Stage IV and have activity in my sternum. My doctor wants to put me on Ipi and I was hoping to hear from fellow melanoma warriors out there about their experience with Ipi. I would like to hear success stories of course but I know that it does not work for everyone. Please share your story with me if you can. I know I am going to beat this disease like I always do. Keep positive because it is over 1/2 the battle.

Take Care of Yourselves

Becky from San Diego

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djpayn's picture
Replies 6
Last reply 10/2/2011 - 9:18am

Just got my results back and am happy to say that i am now 3 years NED!! and i want to thanks all of my friends for being there for me when i was just starting this journey and all the times since. I really feel i couldnt have made it without all of your support, friendship, and kindness!!

 

Its been a tough year, so many have left us. They will all be missed dearly and remembered fondly.

 

smiles and hugs****

 

dawna

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hi guys, its been 11 years since I was first diagnosed with melanoma. I am still currently Stage iiiib but I am still alive and well even after my third primary melanoma.  I have been doing my best as an ambassador speaking on tv and radio trying to raise awareness of melanoma and helping to raise funds for research to get a cure.  As a long term survivor I hope that for the newbies diagnosed with melanoma that even though this disease can be frightening, there is always hope. dont give up.   

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petie540's picture
Replies 9
Last reply 10/6/2011 - 9:52am

I'm in a clinical trial taking ipi at 10mg.  plus GSM 250 14 out of 21 days. Finished 4th infusion two weeks ago, scan yesterday. Results showed over a 60% reduction in the lung mets, now nothing over 3mm. No spread any where else. My doctor was thrilled saying how unusual it is to show this kind of response on the first scan/mri. It's been quite a roller coaster with good and bad scans, but this feels like it could be really good. Very bad rash from ipi, taking prednisone 10-20mg for months,but of couse I'll take it. My adrenals are enlarged but she is unconcerned saying it reveal the intensity of my immune response. Next scan in December with ipi maintenance also in december.

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nickmac56's picture
Replies 5
Last reply 10/2/2011 - 8:01pm

My wife went in for her second gammaknife treatment to pick off two brain tumors. Her scan was ten days ago. They did the pre-treatment MRI this morning and found three more - all three had emerged during this ten day period. Obviously not a good sign - means the cancer is fast growing up there. She was able to have the gammaknife treatment and they went after all five. They will scan again in 30 days. But likely the next treatment for her head will be whole brain radiation. She's pretty emotionally distraught this evening, even though she came through it fine. No side effects yet, even though one was in the speech center. 

We have the weekend to recover - then she has a golf ball size sub-q tumor on her upper arm removed Monday. Then a week later - maybe start a new chemo. 

This disease is just terrible.

Nick

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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Ashykay's picture
Replies 2
Last reply 9/30/2011 - 7:58am

Just thought I'd provide an update on Mum...and ask for some feedback in the Yervoy area of things.

A couple of weeks ago, my Mum got the ok to start on chemo and then Yervoy with respect to her tumour/s. The doctor said though that she couldn't start until start of October as their lab was closed for renovations, so they couldn't formulate the vaccine for her. This has been an incredibly frustrating and almost ridiculous process. I think it's bull that we have had to wait 4 weeks to get this done just because they are renovating their lab.

Mum has had her pain coming back...last night she was really bad. She will probably be back on morphine soon too (she was on it when intiially diagnosed, but then when she had radiation, although it didn't shwo any progress with shrinking the tumour, her pain signifciantly reduced). I'm really worried that because of these doctors who play with people's lives, this whole Yervoy thing might have come too late. She hasn't had any scans in about a month or two either...so we don't know whether it's growing or what.

I just wanted some feedback as to whether anyone has been in this pain before they start Yervoy and have found that Yervoy has improved it??

Sorry for my angry comments, but right now I am a really worried and scared daughter...and unfrotunately I don't think I could forgive the medical profession for their "renovations" if this has come too late. Need some reassurance.... :(

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Dynasysman's picture
Replies 10
Last reply 10/2/2011 - 9:34am

Just learned that the scans I took yestereday make me NED.  So one year after I first found the lumpy lymph node (Melanoma of Unknown Primary), seven months after a PET-CT revealed a second tumor in the same space (but my ONC misread it), three months after an ultrasound-biopsy confirmed it, I am NED and one-year progresion free.

Look, melanoma is a sneaky, nasty disease, so you never know what comes next.  But for those of you just entering Stage 3 or first discovering an unknown primary, it's not an immediate death sentence.  And for those of you who "got it early", well, maybe you did!

Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill It ain't over 'til it's over. Yogi Berra My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

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jaredmiller16's picture
Replies 9
Last reply 10/3/2011 - 7:58pm

 

Been seeing a derm twice a year for the past five years. Nothing has ever come of it, but my last visit he decided to remove a mole that looked different than it had in the past. Turned out to be Stage 1. He said we caught it early and I have 95% survival rate....But I am not buying. Too many times I have heard of people being diagnosed with Stage 1 and then three, six, or twenty years later they have a reoccurrence. So now, I am stuck in the dead depression funk knowing any day, I am going to be six feet under.

Why does melanoma do this? Especially in comparison to to other cancers? Should the treatment for Stage 1 be changed? Is early detection really the key? Or does it just buy you a few more years? Sorry to sound grim about all this, but so many close to me have died of this evil thing and I think its just about time they found a cure! My mom's doctor said Melanoma is a cancer they're the closest with, but, I'll take that with a grain of salt. Thoughts?

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Terra's picture
Replies 10
Last reply 10/2/2011 - 10:44am
Replies by: Terra, Vermont_Donna, Lisa13

Hi - could anybody who was a late responder to ipi let meknow what your side effects were like i.e. did you get them while on the treatment or not until you were responding?  (I know it is a long shot but just wondering?)

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