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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archer's picture
Replies 17
Last reply 4/11/2011 - 1:56pm

For those of you following our journey, this is the latest yesterday afternoon.You remember that on Tuesday we went to see our first onc.  You all let me know loud and clear that my wife and I should see a specialist.

We mentioned to the first onc and remember that was the first time ever being to an onc, for his opinion on a second opinion.  He said if he were in our shoes he would understand doing this.  He even said that there is only one in the whole midwest and he was located at Mayo Clinic.  He went on to say he wasn't sure how "hands on" this specialist was....  So, after he left they came in, took her blood and then on the way out talked to her about insurance and having to get two pre-approvals and that she thought the machine was booked all of next week.  Ok with that.. Remember, we do have an appt on Tuesday, at a Cancer Center and with a specialist.  Name and center taken from this website.  OK  U of Iowa is the center

Now, yesterday afternoon, the first onc's PA calls my wife at her work and asks her if they were still to proceed on her case because the specialist we are going to requested her records.  She reminded her of the conversation with the onc where he stated no problem with him and a second opinion.  The PA then went on to ask my wife, "should we still proceed to schedule the PET"  My wife, confused by this call, having to take this call at work said, "yes" with the understanding that we will cancel if we are happy with the specialist.  Here is the kicker and the main question.  A small history.  They are trying to find the main melanoma and 18 months ago she had "basil cell" removed about 2 - 3 inches away from the underarm where she found the lump (spindle cell).  There seems to be a strong suspicion that the basil cell might  have been misdiagnosed and that would then be the primary.

 So, the last statement from the PA was, what is the other onc name:  my wife wasn't sure and she told the PA that.  Then the PA said, well the other doctor has also requested the stain from the dermatologist that removed the basil cell and we are NOT sure we are going to send this to them. We feel that our local pathologist should review that stain since the lump was first sent to her.  (this is the same lab that called when they first got the biopsy and told us that they were going to sen it to Mayo or the place we are going Tuesday)

Does this seem like normal treatment for my wife to grill her with this and then to mention they are NOT going to send her stain to the specialist we are see Tuesday?  I thought this belonged to my wife and she could have it sent anywhere she chooses. So many questions, so many thoughts.  Thank you.

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I am looking at my Immune modulator therapy to begin in the next few weeks.  Although the long term data is not as well established with Leukine therapy as it is with Interferon therapy, I am tempted to pursue the Leukine therapy due to the less serious side effects as compared to Interferon.  Has anyone had experience with the Leukine therapy, which consists of 14 days on 14 days off each month for one year?  The dose is a shot per day, self administered.


Thanks Wayne

"Hope is the only antidote for fear" Lance Armstrong

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NicOz's picture
Replies 13
Last reply 4/11/2011 - 9:38am

Finally after 3 years of trying to find one it looks like I'll be starting on the 18th. Only have my iPhone access at moment so will be short & sweet (thankfully, I hear you say!) have been running around for a while, not well and organising bits and pieces so haven't been around much. Just wanted to give a heads up to those who may be interested :)

Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another

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love4life's picture
Replies 12
Last reply 4/10/2011 - 10:28pm

Hello All,

I've been browsing the message boards here for around a year and have finally gotten up the courage to say hi.  I have been diagnosed with Stage IV MM with metastasis to the brain and lung.  I am currently NED and am finishing up my year of Interferon in the next 6 weeks.  I am curious if anyone out there has had brain mets and what type of treatment you were offered?  I am very hopeful that the Interferon works and that I will remain NED for many years to come but am wondering what other treatments are available for someone like me.  I am a young mom and am willing to try anything to keep this monster from popping up again. 




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Anonymous's picture
Replies 9
Last reply 4/10/2011 - 9:55pm
Replies by: lhaley, dian in spokane, MichaelFL, Janner, Anonymous, Lisa13

Does anyone know what the nodes in your neck would feel like if they were infected with melanoma?  I had my groin nodes removed a year ago and 3 weeks ago I noticed the lymph nodes on the left side of my adams apple are swollen.  It has gotten slightly more swollen and i have now noticed a lump right next to the lymph nodes.  Does anyone know what it would feel like if the nodes did have melanoma present?  I was just wondering if it would just feel like swollen nodes you might get from a sore throat or if there were any particular characteristics of melanoma in the neck nodes.  One doctor told me that if there were malignat melanoma present there would be a very hard lump and it would not hurt.  I'm probably just being paranoid.  thanks in advance.


all the love,



"without the bitter the sweet ain't so sweet"

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Nebr78's picture
Replies 1
Last reply 4/10/2011 - 5:28pm
Replies by: Janner

I can't get answers from Drs. (5-6)  I had radiation for Melanoma lumps(nearly golf ball size on face and chest)  about 2 months ago.  There was about 18 treatments and Dr. said they were strong.     Now  (April 11) I am so darn weak it is pitifull.  It is really bad early in the morning.. I get so I just can't move anymore.  Have been in house for a weak.  I am short of breath but that could be my heart disease and terrible dry mouth, and that can be from all the medication I take..  MY QUESTION IS:   HAS ANYONE ELSE HAD THIS WEAKNESS BIT AFTER RADIATION?   TWO MONTHS AFTER??  Area affected is mainly from waist down.

 Don't say get another  opinion as I have had about 6.  With my heart disease of 40+ yrs, and being 79 yrs. old I am not going to last too much longer.

I just want to be a little more comfortable with the time I have left.   This weakness bit sort of come on all of a sudden.    By bedtime it is alittle better but I would not want to try to walk 1/2 block.   I am supposed to have two masses in lung 4cm and 2cm and growing.    One more complaint and I will quit.

Occasionly I will cough up yukky phelm like I had a cold and infection in lung but I don't.  Hope there is a expert Dr. online.   (would like to play a few more rounds of golf but can't pick up bag now)





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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?


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. 


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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 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 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   .


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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'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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