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 3
Last reply 4/9/2011 - 11:34am
Replies by: ErinMcH, Janner, lhaley

HI- me again (the one who is asking about UNchanging moles and innocent new ones etc.

I am obviously on high alert now... fun!
I just noticed a BRAND new mole on my leg. It looks normal (brown, about 1mm, round) in and of itself, but it is definitely brand spanking new.

I have hundreds of moles and family and personal history of mm in-situ. I will plan to get it removed, but is this the norm?
For moley people, do you get new moles and only "panic" or remove if they continue growing or look otherwise atypical?

So far, 3 newish ones I have removed have all been moderately atypical (two on butt and one on toe)

I am 40 btw....

Thanks-- I am in a panic over this little thing (among others) and need some advice as i don't see derm for a month.

Don't want to rush in for a normal looking spot because I have tons more to show/ possibly remove and I don't want to get crazy.. thanks

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I had my melanoma removed and a sentinel node biopsy done in December of 2010.  One of three of the sentinel nodes was positive for cancer. This led to a superficial groin dissection , where all of the Lymph nodes were clear of cancer. 

I saw my Oncologist today and was offered three possible therapies for my Melanoma;

1. Standard INF - 4 weeks of IV therapy by 48 weeks of 3 shots per week.  Therapy is FDA approved.

2. Pegylated INF - One shot per week for 2 years.  This treatment was recently approved by the FDA.

3. Leukine(GM-CSF), not to be confused with IL2, 14 daily shots followed by 14 days without.  This schedule to be repeated for one year.  Long term study data for this therapy is not yet available.  However, Leukine has been shown to be helpful in cases where there has been a cancer recurrence in the patient.

I have a couple weeks to make up my mind and set things in action and would appreciate any input anyone has for the PEG-INF and the Leukine(GM-CSF) therapy versus the standard INF.

"Hope is the only antidote for fear" Lance Armstrong

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dianneCT's picture
Replies 1
Last reply 4/8/2011 - 12:09pm
Replies by: Vermont_Donna

Have been Ned since January 30, 2006 due to isolated limb perfusion and Temodar.  (lymph node dissection and  50 weeks of interferon)

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beckyt's picture
Replies 3
Last reply 4/8/2011 - 10:17am

Hello! I have been invited back again to our local 5th grade Health Fair to present on skin cancer/melanoma.  I am looking for a video that would be of interest to a 5th grade level.  Only need a 10 minute one or so.

Anyone out there have a suggestion?

Thanks!

Beckyt, wife of melanoma angel Brad (5-12-07)

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CKasper's picture
Replies 2
Last reply 4/8/2011 - 9:18am
Replies by: nickmac56

I was watching the news yesterday evening and was shocked to hear that part of this budget hold up is due to certain riders the House of Representatives is attaching to the budget.  One of the riders is to abolish Medicare.  The House is also asking for trillon dollar cuts to medicaid.

Medicare is paid by everyone through a separate tax, its our Social Security /Medicare tax.  So each one of us pays into this system which is suppose to be a very well run system.  However there is a movement to privatize Social Security or to get rid of it.  Its our money and our entitlement and the House or Representatives shouldn't be messing around with it.  I don't know how many of you are receiving treatment through medicare or medicaid, but these two sources of health care for folks who do not have regular insurance is in jeopardy. 

If you are a person receiving health care through one of these programs, please email your congressman and senator urging them to stop the gutting of these programs.

We have two wars, and another possible one in Libya where we are spending billions monthly and they want to gut medicare and medicaid.  I know many people who are on Medicare and I don't think its right.  Its our money and its our entitlement.  Let them find another area in which to cut. 

C

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mkp050680's picture
Replies 14
Last reply 4/7/2011 - 11:34pm

a very close family friend died from melanoma 2 years ago at the young age of 23. this disease scares life out of me - and now my husband has had 2 atypical moles removed - they were both mild, but i am now so nervous that he is going to get melanoma as his risk is increased. did any of you have atypical moles before melanoma?

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Jan in OC's picture
Replies 11
Last reply 4/7/2011 - 9:39pm
Replies by: Jan in OC, stillhopeful, o2bcheri, RMcLegal, MichaelFL, Anonymous

Hi everyone.  I have been here a few times as my husband's battle progresses.  But now i am asking for help (a hard thing for me).  We have been going to UCLA for the last year and a half.  He is stage IV with mets throughout his organs, largest in the liver, plus brain mets that he has SRS for. He has tried interferon, BRAF, SRS, IPI.  Some days we are accepting of his treatment, other days frustrated. UCLA does not actually take a" team" approach to his treatment and I'm not sure the doctors actually talk to each other!   Last week, the doctor told us the IPI was not working and asked what we wanted to do now, like he had no other options for us.  My husband is a little depressed.

As a side note, after a frustrating year of NO success with a loan modification, the bank is taking our house at the end of this month and we need a new place to live by Easter (need a few miracles here).  My husband lost his ability to work and is on SSI.  I also take care of my disabled 21 yr old daughter who lives with us.  SoCal is too expensive even to rent on our reduced income and we cannot afford to live here.

We have used up all of our financial assets in this cancer battle (lost my business) and filed for bankruptcy last month.  His family just doesn't seem to care or understand what we are going through (although we have explained a million times!).  A lot of our "friends" have backed away, like they think melanoma is contagious.  Most days, I feel like our family is all alone in this.

My husband said that if UCLA cannot offer us any other options, then right now we can move anywhere in the country for treatment........in under 3 weeks LOL

Where can we move to, near a great melanoma center that offers him the best chance of survival?  Yes, I reviewed the list of centers that Michael posted, but which ones are the best? We are seriously considering MD Anderson in Houston.  Don't know any of the doctors there?   Recommendations??

I do not have the time to fly anywhere to find a place to rent, so will be going in blind.  Do not know what areas to look online, big city.  Please feel free to email me at oldhippielady50@yahoo.com for any help or concrete suggestions.  

We have many friends praying for us, but I need more that that now.  I am doing everything I can to keep my family together and need HELP!!!!!!  No stress here, nope, nope.  just feel like I am running out of time, struggling,  and don't know what to do.  

Jan, wife to Dirk

laughter is the best medicine

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Diana C.'s picture
Replies 1
Last reply 4/7/2011 - 9:03pm
Replies by: MichaelFL

Dana Farber News includes a new story on ippi. I hope this link works   .http://www.dana-farber.org/abo/news/press/2011/fda-approves-new-drug-for....

 

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EricNJill's picture
Replies 13
Last reply 4/7/2011 - 12:48pm

When Eric began the BRAF/MEK combo we knew there was a chance that the Melanoma would find a different pathway and come back, unfortunately that seems to be what is happening. We just didn't expect it to happen so soon... When Eric started the treatment his LDH level was very high and throughout the treatment is was dropping until 2 weeks ago...it's began to climb again and the level in his blood today was as high as it was when he first started the treatment.  Because of this and the changes in his leg, the Oncologist believe that the treatment is no longer working. Eric was pretty upset and asked to be left on for another week to give it a chance and the doctor agreed to do so. He had a clinical trial consultant come in and talk to us about starting another treatment. I will be spending a lot of time this week researching that as well as other options.

The new trial they are offering him is the Eisai E-7080 that I saw someone else post about on the forum. 

JillNEric in OH

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archer's picture
Replies 21
Last reply 4/7/2011 - 10:39am

Ok, I was asked to report back on my wife's first visit with an oncologist.  It was full of downs and one up.

First she was seen by his PA.  Nice female, caring, asking a lot of questions and full body exam of her.  Found nothing.  Yeah!

Then the oncologist comes in and does basically the same thing.  Asked her to dress and both came back in.  Here is what he said.

Please keep in mind this was a first time for both of us... we went in scared, confused and sick (I had these symptoms not my wife)

He said that it could be a stage 3 or possibly a stage 4.  He said if it was a stage 3, it was curable and would be treated with  that in mind. (wow, I never

expected to hear that) but if it was a stage 4 it was not curable and she would have to make some decisions if treatment was worth the side effects or

would it be better to do nothing.  After that conversation, my bubbly, smiling, always positive wife was floored.  No smile, the life went out of her 

immediately, zest was gone etc.  I could immediately tell and I told her to ask him and tell him what she was thinking.  I asked her if he had scared the hell

out of her and she told him "yes".  He apologized and told her that wasn't her intention.

After they left, a nurse came in to draw blood and for whatever reason, he started talking about her father, 65 yo who had a lump in his neck.  Not really 

big she said but he came into this same oncologist and had it biopsied and the results were melanoma.  Well, after a PET scan, it has metastasized to his 

lung.  Small tumors she said.  The doc along with the father and family decided to wait since he had a strong immune system etc etc.  It has been 7 

and the last scan or xray showed the lung tumors grew but barely.  They are going to keep with the watching.  So, as she was sharing that story, I thought

to myself that if the doc knew she was telling that, maybe she'd be in trouble but we were glad she shared that because it became the positive point of

out time at this place.  So, we don't know what to think of this oncologist.  We are going to see another one Tuesday that says he specializes in 

melanoma.  At least it will give us something to compare to.

My thoughts...

1. Please share your thoughts with us on how this first encounter strikes you

2. How do I get this sick feeling in my stomach to go away.

3. How do I get my mind to quit racing and always imagining the worst

Thank you all for your replies.  I look forward to reading them.

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cheryl brodersen's picture
Replies 9
Last reply 4/7/2011 - 1:31am

How do you know when to stop chemo? My husband is Stage IV, has been for 2.5 years and last year underwent 19 treatments of DTIC. Now has just wrapped up 6 treatments (2 rounds) of abraxane/avastin (the breast cancer drug) and gets scanned tomorrow to see what effect if any the A/A chemo has had. This is 25 rounds of chemo. He is pretty sick most of the time. Quality of life sucks.

So tomorrow, if the tumors are 'stable' or shrinking just a little, they are going to want to keep going with the chemo. When do you call it off and switch to another drug? He is BRAF positive and has never tried ipi or any of the MEK or GSK or that other new one...Evesia? Whatever, I just read about it on here! When do you make that call? What is the criteria that you use? It's so scary to take matters into your own hands. We love our oncologist--his oncologist, I should say--but I know he is going to want to keep going with the chemo. I'm afraid that it's going to make him too sick to ever bounce back. Does that make any sense?

Also, where do I find the BRAF drug trial info? Sorry, I tried to google it, but didn't have much luck. I appreciate any help anyone can give me. I want us to make the right decision, to be proactive, but I would love to hear some other people's thoughts on this.

Thanks to all of you!

"There is no such thing as a normal life, Wyatt. There's just life." Doc Holliday to Wyatt Earp, Tombstone (movie)

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KellieSue's picture
Replies 3
Last reply 4/6/2011 - 9:44pm
Replies by: jag, King, Fen

6 weeks on B-RAF and first scans today!

Slight shrinkage.! Whoop! Of course I would have loved to hear, "We can't find anything on the scans. "  Ha! Since I know that
won't happen I'll take some shrinkage.

My neutrophil count was kind of low at 1100 and it has to be at 1500 per clinical trial rules so I have to stop taking it for a few days. I'll have another blood draw on Friday, not likely that it will go back up there in just 3 days, but here's hoping. (Guess I'll make some liver for dinner. ;)

My dr. tried to convince them to let me keep taking it since I'm asystematic but it was a No-Go. My lymphocytes are still pretty high, likely the IL-2 still floating around in there maybe?
So.. just waiting around now. Dr. wasn't worried about being kicked off the trial, this is just a hiatus.

I feel pretty good. Side effects include some intermittent diarrhea, some acne that just started the last fews days and dry skin.

Kellie(from Iowa) Stage IV on B-RAF

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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Have been Ned since January 30, 2006 due to isolated limb perfusion and Temodar.  (lymph node dissection and  50 weeks of interferon)

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sharmon's picture
Replies 1
Last reply 4/6/2011 - 7:54pm
Replies by: King

Hi everyone,

We just got the news that after 14 months his tumors are growing again,  He is Braf negative,  has tried luekine,  ipi  with chemo, and bio chemo,  the gsk mek trial is opening combo trials using chemo and MEk together and they want to move him into one of those right away at MD anderson. 

Does  anyone have any ideas.

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claudia-uk's picture
Replies 7
Last reply 4/6/2011 - 7:08pm

My husband received his first infusion of Ipilimumab 2 weeks ago. He was tired before, but since then he sleeps most of the time. About every 3 hours (during the day) he has to sleep for 1-2 hours. Then he goes to bed at about 9pm and can still sleep all night.

And he does barely eat anything.

Has anyone else on Ipilimumab experienced the same? Will it get better eventually?

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