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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leslieg's picture
Replies 2
Last reply 5/29/2011 - 3:40pm
Replies by: LynnLuc, washoegal

Lamotragine / Lamictal is an anti-epileiptic drug that is also used to treat bipolar. Users report many "skin oriented" side-effects, and it makes one more sun-senstitive. It is known to bind to melanin-producing areas (or some such). It can also cause a fatal rash (Stevens-Johnson syndrome.)

At the end of the summer of 2009 I started on a trial of Lamictal. I was on it for only a few weeks, as I thought I had too many skin-oriented symptoms and was worried it might be "the rash". My skin was simply looking different, most of my ketoid "scars" changed appearance. At least one of my moles did, too (it turned almost black -- but with the lamictal / melanin thing, I wasn't worried). I'm sure others changed but not in such a dramatic way. I believe I saw my derm. a few months after this, but I didn't point it out to her and she missed it. Then I went for too long, not getting back 'til two weeks ago.

Of course, the mole that changed was melanoma (in situ, yay!)

But I am also back on Lamictal because we haven't been able to find an effective drug for my bipolar depressions and if I can tolerate Lamictal, it can be a wonder drug for that purpose. I have been on it for a longer time now, and at a higher dosage than I managed before.

And boy, oh boy, is my skin changing again. I have many moles on my arms and shoulders, and I tend to stare at them when I am procrastinating. But I don't have a photographic memory or many photos of myself. It seems like most of them are changing, getting darker spots, being not-so-round ...

I've googled but not been able to find any association between Lamotrigine and melanoma.

Questions:

1. Has anyone heard of or suspected an association between Lamitrigine and melanoma? (Or do I just blame the melanoma occurance on the increased sun-sensitivity of the drug?)

2. Do I bug my derm. for an exam ASAP rather than wait 3 months? (She saw the suspicious spot before she'd done my full-body exam 2 weeks ago, and I could tell she was worried, so I know she looked at least a little more carefully than usual.)

I'll take pictures of the way-things-are-now, and I see my psychiatrist on Wed. We'll probably give up on this trial. I know it may seem that it should be a no-brainer to stop the Lamictal, but the risk of death in the depressive phase of bipolar is freighteningly high. 

I'm just so, so worried that there is more melanoma, or that I am making more right now.

Thanks for listening.

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gtown's picture
Replies 4
Last reply 5/29/2011 - 1:43pm

Hey what's up,

Just got the results of my sentinel node biopsy and everything came back clear, no evidence of cancer in the lymph nodes. Man I'm psyched, what a long week it was to wait. My head was going a mile a minute all week long and this was a hell of a way to start summer! WHEW! I was figuring with the mitotic rate so high( 7) it had to have gotten into the lymph nodes! WOW, I had just signed up for a 1/2 marathon about two weeks before the initial diagnosis and now I can't wait to train again Sunday. I want to thank everyone for their help in the last couple weeks, it can get real tough when you're by yourself   (I'm single) and you guys always took time to give me some feedback.

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MaryMary73's picture
Replies 5
Last reply 5/29/2011 - 12:04am

A good friend of mine has a weird mole on her right calf, just below the knee and just by looking at it, it is bigger than 6mm in diameter. It's light brown but has some blotchiness darker brown in it too (no black or red though). It almost looks like a scar. Out of the ABCDE's of melanoma, it has the ABCD characteristics but it's not as ugly as my superficial spreading melanoma was. Anyhow, I saw it for the first time today but she says she has had it for years and it hasn't changed. I asked her if she has showed it to her dermatologist and she said that he told her it was nothing to worry about. I asked her if it has ever bled. She said yes, every time she shaves her legs. She said that she did not tell her dermatologist about the bleeding. She is VERY light skinned, pale milky white to be exact. I told her that she should get it removed because only a biopsy would give her the all-clear.

Am I being paranoid or annoying? sad

The only real wisdom is knowing you know nothing -Socrates

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Gene_S's picture
Replies 11
Last reply 5/28/2011 - 11:42pm
deirgey's picture
Replies 4
Last reply 5/28/2011 - 11:23pm

As some of you may know, my father has stage IV Melanoma. His first treatment at Arizona Cancer Center was Avastine and Abraxane and he started that some time in February. It was clearing up most of the cancer cells in his lungs and spine but the cancer in his liver was still growing so they pulled him from that. He started his 1st dose of IPI about 5 weeks ago and started having diarrhea 2 weeks ago. They did not give him his second dose of IPI and instead proceeded with a colonoscopy and found he had colitis. His doctor deemed this as a successful response to IPI and that he was 1 of 2% of people who responded so quickly to the drug!! I was surprised he was so quick to say it was successful without a scan to follow, however he is the doctor and not me :) Nevertheless, we are VERY excited with this news, however we are trying to be cautiously optimistic. :)

Anybody else had a quick response to IPI?? YAY for IPI!!!

Deidre Grief (Father Stage IV)

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slpinion's picture
Replies 15
Last reply 5/28/2011 - 9:00pm

YAY!!!!! Amen......I am SOooooo BLESSED!!!!

All my scans (PET / CT's / brain MRI) that were completed last week were negative.....thank you, Lord......there was no sign that the cancer had spread beyond the lymph nodes around the original melanoma site. Surgery to remove the remaining lymph nodes around the original melanoma site will be June 13, and then treatments (Interferon has been suggested) will begin soon after.

Sharon in GA
Stage III

~ Life may not be the party we hoped for, but while we're here we should dance. ~ (Unknown)

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Lisa13's picture
Replies 11
Last reply 5/28/2011 - 7:56pm

Since finding out 2 weeks ago they found a few small nodules on my lungs, I've been in fairly good spirits considering. I'm trying to remain hopeful that in another 2 weeks, they will find they havn't grown or not prove to be anything at all.  That being said, today I'm having a really weak day.  All I can think of  is this cancer spreading like wildfire throughout my body and that my next CT scan may reveal many spots that may not be controlled at all.  This is my biggest fear and I'm becoming increasingly more frightened.

We just sold our condo and bought a beautiful house that we move into in August and I can't seem to get excited about it because I fear I may not even begin to enjoy it. My husband talks about us growing old in this house and watching our daughter grow up and go to school and I don't even know if I'll be here next year.  Right now, they don't know what these spots are because they're so small (measuring a sonometer ??) so I have to be remain strong.  

I really hate that this is happening to me and I want so badly to be able to live much longer than these stupid statistics indicate. Most of the time I'm probably in denial about the whole seriousness of this situation, but deep down, I'm always hopeful and positive - except today.

Lisa 

Many impossible things have been accomplished for those who refuse to quit

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shellebrownies's picture
Replies 8
Last reply 5/28/2011 - 7:36pm

We got word yesterday that Don tested positive for the BRAF mutation. The nurse called us right away and we went right in to Boston to get him signed up for the GSK BRAF/MEK trial. In the interest of expediency (and to help get his pain level under control...he'd been having some issues with that this week), Dr. Lawrence put him in the hospital to get his trial pretests done quickly. He told us he didn't think he'd have any problems passing them, but I am still waiting on baited breath for when they tell us he's officially in!

 

Michelle, wife of Don, Stage IV

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carol b's picture
Replies 11
Last reply 5/28/2011 - 7:29pm

First of all I want to thank everyone for all of your prayers. You all walked beside me while i was taking my treatments. My goal was to get 10 bags and 10 bags i got. i should have skipped the last one but as my family says i am stubborn.  The side effects this time are minimal. Little itching and alot of confusion.My mental capabilities are only back to about half. I pray that isn't permanent. I go back on June 1 to see how many bags of the IL2 i can get. My goal is 5 because i don't want to over do it and not just be physically damaged but mentally as well. That scares me more than melanoma. After my 5th bag i didn't know who my husband was. The most wonderful man  in the whole world and i forgot him. Thats terrifying to me. I rather be dead than to no longer know him. So thats why im stopping at 5 bags. I have to do at least 15 bags  to stay on IL2 and so thats why im choosing 5 bags for my goal. I understand its only been 4 days since ive been home but my motor skills and my thinking are not what they should be, in my opinion. I have only 5 days left before i do it again. And im gonna need all the prayers i can muster to get thru this one. Thank you for walking this walk with me and even though you were not there thank you for holding my hand and praying with me. i know i got TONS of prayers this time because the walk was so much easier and peaceful. I just wanted to give you all an update and to thank you for praying for a stranger. May God be with you all as we walk thru this valley of death, , fearing no evil,, because we all know who is in control. But friends like you get me thru my day and for that i will say thank you again. May god bless you all and my prayers will not stop, i will continue to pray for you, The warriors and the caregivers.

carolb

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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arnie and sherry's picture
Replies 4
Last reply 5/28/2011 - 6:05pm

My husband arnie, was diagnosed in2008 it started with a mole on his back, 9 months latter it moved to his neck 21 lymph nodes removed started intrerferon for1 year very hard on him .13months later it spread to his chest  he had surgery to remove it . it has been about 11 months and he has been doing fine he just had a cat scan of chest abdoium pelvic and neck . does anyone know what we should try next.

keep on trucking

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dian in spokane's picture
Replies 10
Last reply 5/28/2011 - 5:43pm

I saw my oncologist yesterday and had pretty positive results for the scans I had on Monday. I am now over two years in remission, but for over a year of that there's been some medium SUV readings in my neck/throat area. The first time coincided with a bad lung scan, and all of it seemed related to a horrible bout of some flulike thing I had for weeks and weeks. That was sometime in January of 2010. Things have been better on all my scans since then, but there's always a little something lighting up in that area.

This scan, the SUV is actually lower, at 5.4  than the last scan (in Jan it was 6.1) but it has grown from 14 mm to 2 cm. They don't call this a mass or tumor, but refer to it as 'a fullness in the left tonsillar region which may be malignant'

So I'm going to see an ENT, maybe have a biopsy, maybe have a tonsillectomy, maybe neither..who knows. With my history I can't ignore the recommendation but neither my oncologist nor I really believe this to be melanoma. And no other signs of subQs or organ involvement, chest, pelvis, abdomen and extremeties all clear. 

Oh! and I convinced him that we can go out to 6 month scans! it will be nice not having to do all of that again for another 6 months. Now I just want them to deal with the throat thing in a timely manner so that I can be singing in time for festival season.

dian in spokane 

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killmel's picture
Replies 6
Last reply 5/28/2011 - 2:25pm

Just wondering how you are doing??? My prayers are with you both.

Doug

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jene8511's picture
Replies 16
Last reply 5/28/2011 - 11:27am

Hi Everyone..I will try to keep this as short and sweet and understandable as I can..

I am 25 years old and in April was diagnosed with .70mm melanoma clark level IV on my right forearm, about 5 inches from my wrist. I had a wide excision done before my SNB because my dermatologist scared the crap out of me. About 3 weeks later, I had the SNB, in which 2 nodes were removed. One pathologist read them, and found nevus cells, but sent them to boston for a second opinion. Second opinion from Boston comes back as having cells that resemble those of micro mets of melanoma. 

I went to Boston last week, and I will tell you, being in the health care field I was pretty taken aback that the surgeon basically said, well this is what we can do..(take out the nodes). My dermatologist feels very strongly about not doing it, saying it does not do any benefit. I found this study and I am intriqued. http://www.gmmm.com.ve/lectura/00000658-200906000-00021.pdf

It brings me to ask...do I really need to have this done? I feel as though they want to use me as a lab rat....take my nodes, see if anything is there..and then the course of treatment will be the same...( IPI was mentioned). I am trying to convinve myself I am not in denial, but that I am advocating for myself. I understand Boston is a great place to get the care, that this disease is nasty, and that they know what they are talking about. I also feel though, that they know more then they are telling me. 

I have a appt in 2 weeks with the surgical oncologist and the medical oncologist. The surgical oncologist offered to review my slides and discuss my case at their DR conference next week. I have heard horror stories about these, and I really just want what is best. I do not want to be over treated, or undertreated. Either way, my feeling is...if I dont do it, and something happens to show up elsewhere, I will still have to do IPI anyway. 

Has anyone elected NOT to do this surgery??

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mimi0201's picture
Replies 2
Last reply 5/28/2011 - 9:21am
Replies by: Cate, Carol Taylor

     My husband has been deemed too weak for Yervoy and is now at home with Hospice care.  This has been a long journey with more to come. 

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debandmike's picture
Replies 15
Last reply 5/28/2011 - 6:34am

I am the primary caregiver for my husband who has been dianosed with Stage 4 Melanoma Cancer with tumors in his lung and liver. That was Valentine's Day 2011 and he has completed his first series of IL-2. It actually went better than expected buy we have to now wait for results until June 21st. Since cancer has become part of our lives it has been so different and scarey. Looking for someone to relate to with this experience so that I can atleast survive whatever lies ahead.

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