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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Anonymous's picture
Replies 17
Last reply 6/22/2012 - 4:13am
Replies by: LynnLuc, Charlie S, Anonymous, Janner, Gene_S, washoegal

Are my odds of another higher than for my siblings since I've already had one?  We have same skin type, same type of moles.  We have skin that tans, doesn't burn easily.  We do freckle and have multiple freckles but not that many moles.  I am a little confused as to how increased my odds are and how carefully I should be watching for a new one after my in situ diagnosis?

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robbier's picture
Replies 1
Last reply 6/20/2012 - 1:26am
Replies by: ALM

Today I had my check-up with my Oncologist, a nd everything is great and still in remission.  won't have to have test again until october of 2012.  As of this month I am 9 months in remission without any type drug.  Very thankful that I did not have to go through that kind of regument.  I keep thnking God for keeping me and uphold me.  Thanks to all of you who are going thorugh this , be stong.   It takes courage and faith to stay stong, especially when one has been told you have cancer, stage lll.     Nope its in remission, and will stay in remission.  Had cancer past tense.  Everyone have a great day

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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Kellie-T's picture
Replies 2
Last reply 6/20/2012 - 9:45am
Replies by: Tina D, ALM

Just an update. Zelboraf is working! First 8 weeks mass shrunk half it's size. 2nd 8 weeks mass is back to normal size lymph node! Started at max dose but reduce to six per day after the first week due to side effects. The side effects are very tolerable. Making life adjustments due to the sun sensitivity and have become an expert with an eyebrow pencil. All and all, living life and grateful for it!

Life is not by accident. Make every minute count.

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yoopergirl's picture
Replies 5
Last reply 6/20/2012 - 8:31am

I can not wait until the beginning of July to see my oncologist for this nagging cough and shortness of breath so I made an appointment with my GP he has all my records from Madison. Hope he can help me with this coughing and to top things off I am having terrible panic attacks. We leave on Friday for WIsconsin for our son's wedding and that is a 6 hour ride, hubby said he will put the seat down in our van so I can lay down since that is the most comfortable I feel, this just sucks I have so much to do to get ready and all I am doing is resting. JUst needed to vent some!

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scots's picture
Replies 2
Last reply 6/19/2012 - 8:27am
Replies by: scots, Anonymous

On NBC last night there was a commercial on Melanoma Awareness by Bill Cowhers.  He also has a web site.

http://www.melanomaexposed.com/

 

First Time I have seen any commercial about melanome during prime time tv.

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Jewel's picture
Replies 3
Last reply 6/19/2012 - 10:41am

Hello Everyone,

 

My husband was diagnosed in Nov 2010, Since then he had a Recurrance on his calf in June 2011 and a full LND where he had 3/19 nodes

positive for Melanoma. He has had no treatment as of yet. We have been blessed with clean scans since then. In the event it comes back I

was wondering if we should do Yervoy first followed by Zelborof or the other way around. Just looking for some other opinions.

 

Thank God for this board.

 

Jewel

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deardad's picture
Replies 13
Last reply 6/23/2012 - 11:25pm

Hi does any one know of trials in Australia for patients with brain mets?

I'm guessing that's a long shot...

Thanks in advance 
Nahmi from Melbourne

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atcchris's picture
Replies 2
Last reply 6/19/2012 - 4:00am

Not sure if this is a dumb question or not... probably would go better if I searched the site to see if it had been covered before... but what the heck.

With Zelboraf, why is it once you've hit NED on scans, we don't take a break from it and keep scanning?  Is it because it doesn't work that way.. impossible for it to kill anything other than tumors (IE, can't clean out the cellular level of the disease, or whatever it is that causes new tumors?)

Wouldn't that at least buy extra time before the resistance sets in?

Thanks... I'm figuring the answer is probably "it doesn't work that way'  but you never know.

 

Chris

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Cindy33's picture
Replies 9
Last reply 6/20/2012 - 12:41pm
Replies by: Janner, Cindy33, ALM, Fen, Gene_S

Hello All,

Thank everyone for posting. I am finding comfort here and realizing I am not alone. I have had 2 primary melanomas and one severely atypical. One SNB, 3 WLE and am scheduled for one more WLE this week. None of my moles looked suspicious to the docs and they have been shocked when they come back melanoma/atypical. I currently am waiting to get stitches removed from MIS and will also have WLE on the same day. Waiting for results on several other biopsies, and have identified one suspicious changing mole and three new ones!  I am sick of being cut on and stitched up but grateful for the chance to catch these moles early.  I have had so many biospies I have lost count.

I am interested in mole mapping, but don't know much about it. I know OHSU does it, but do not believe insurance covers it. I see that I can order a software mole mapping program. Has anyone used that?  I am worried about what this means for my children and grandchildren. I am on a roller coaster of fear and panic. I am stage 1, but thinking that at some point, sheer numbers of problem moles might change that. 

Anyone with tips regarding mole mapping? Also, how do I know my dermatologist is acutally a melanoma specialist? I am in the Pacific Northwest, about 1 hour from Portland. I am considering going to Fred Hutchinson Cancer Center in Seattle or Angels. Overkill? (pun intended) I like my derm and PA, just want to make sure I am doing what I need to do to take care of myself. 

Thank you and God bless you all. 

Cindy

Ring the bells that still can ring.

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Replies by: Janner

Saw this and thought I would share.

(Janner I lost your email but thought you might find it interesting. I just read your bio and you helped me so much about 5 years ago. Mary)

/http://www.forbes.com/sites/bruceupbin/2012/06/18/wait-did-this-15-year-old-from-maryland-just-change-cancer-treatment/

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catmandu's picture
Replies 4
Last reply 6/19/2012 - 11:20am
Replies by: catmandu, Gene_S, Janner, Anonymous

help!  i have been diagnosed with recurring melanoma in my groin area.  it has been removed.  i am going to md anderson in houston soon after they call me with an appointment.  my doctor told me it would cost me 90,000.00.  i have insurance but it only pays 70%.  maybe there is a clinical trial.  i just want to give up.  i am 62 and not on medicare yet.  what can i do?

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alabama girl's picture
Replies 9
Last reply 12/4/2016 - 9:17pm

I was just wondering how those of you that are IIIB stage are doing. I was diagnosed at that stage in Nov, 2011. I  also had breast cancer 3 months ago which is right above the chest wall where my melanoma was. I raised money and walked in the Relay for Life and I guess it made me very down and wondering what survival rates were for us. My next CT scan is in July and you know, not looking forward to it. I am normally pretty upbeat. I guess seeing all those who have died from cancer just makes you more aware of it all and brings it to mind. I usually try to just live one day at a time and enjoy life.

Thanks for any input and encouragement! .

Alabama girl

. Don't tell God how Big your storm is, Tell the storm how BIg your GOD is!

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ACTION! Help Save the Life of Darcy Doherty, Father of Three Children to get immunotherapy drug Anti-PD-1 (BMS-936558)  for melanoma .

A Cry for HELP!!!

Please write to Dr. Elliot Sigal at Bristol Myer Squib

Elliott.Sigal@bms.com

Dr. Sigal is the Director of Research at BMS.

Please send a note to Dr. Sigal requesting that BMS open compassionate use for Mr. Doherty. I know it is a long shot/ Hail Mary Pass but, base on my research, this drug with the combination of IL-2 may be able to beat the odds.

Bristol Myer Squib says "At Bristol-Myers Squibb, we are firmly focused on our Mission to discover, develop and deliver innovative medicines that help patients prevail over serious diseases."

Is this all lip service? Let see if BMS puts their money where their mouth is and grant this compassionate care use for this derserving family. Doherty with his clinal trial of Yervoy (Anti-CTLA-4 therapy) helped get the drug FDA approved through his survival data. The least Bristol could do is to grant the dying man compassionate use of the next generation drug called Anti-PD-1, (BMS-936558)

Bristol Myer Squib needs to show some compassion.

It is their ETHICAL Responsibility.

“It is not the strongest of the species that survives, nor the most intelligent, but the one most responsive to change.”

~Charles Darwin~

 Take Care,

Jimmy B

 

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ALM's picture
Replies 7
Last reply 8/21/2012 - 11:38pm

Hi Everyone

From what I have read my melanoma (Acral Lentiginous Melanoma) is fairly rare (more so since I am caucasian).  Is there anyone out there who has the same disease and can offer me any info? I am stage 4. The primary liesion was on the middle toe which was amputated. A year later another liesion appeared on the ankle which was surgically excluded. I would like to know if ALM is any more dangerous or aggressive than other types of melanoma or are all melanoma basically the same?

Thanks for any help 

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MaryEllen's picture
Replies 1
Last reply 6/17/2012 - 6:02pm
Replies by: Eileen L

 Hi everyone,

I haven't posted since being diagnosed with Stage IIIC in 2009 - now Stage IV. Currently, I have a positive inginual lymph node and multiple small lung nodules (about 5 - largest 6mm). I have acral lentiginous melanoma. Quick recap: Removal of 3.6 Breslow primary on L heel, positive sentinel node biopsy (no full groin dissection), heel reconstruction 2010, multiple in-transits treated with Oncovex (all gone), inginual node injected with Oncovex (biopsied during Oncovex trial as negative, now biopsied as positive), and now multiple small nodules in both lungs (about 5 of them - largest 6mm). I am BRAF, CKIT negative but am NRAS positive.

My complication in treating my one inginual node and lung nodules is that I have had multiple sclerosis for 23 years - an autoimmmune disease. My symptoms are extremely mild and far between. I am excluded from IPI and anti-PD1 trials because of the MS. I am being treated at MSKCC in NYC. My doctor and I are considering  IL-2 at Johns Hopkins next month. Of course, IL-2 carries a risk of making auto-immune disease worse too.

My questions - (1) Are there any promising later stage trials that take advantage of the NRAS mutation; (2) Is there any "wiggle-room" getting into a anti-pd1 trial with a very mild form of autoimmune disease (my neurologist would go to bat for me) and (3) does anyone have any experience with IL-2 and an autoimmune disease.

If anyone has any thoughts, I would be most appreciative.

Thanks, MaryEllen

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