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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hi all got a ? my moms cancer is back this will be 4 times in the same foot.  they will want to amputate  but i think this will  kill my mom  , she has had a stroke that affected the right side the masses 3 of them r on the left, she has been getting blood transfusions for 2 years now 18 in all. fluid around her heart from cardiomyopothy.

 gues my ? is how long can she live doing nothing, we know its no\t in any major organs, not in bones or brain, thank you sheri from ohio

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hi all got a ? my moms cancer is back this will be 4 times in the same foot.  they will want to amputate  but i think this will  kill my mom  , she has had a stroke that affected the right side the masses 3 of them r on the left, she has been getting blood transfusions for 2 years now 18 in all. fluid around her heart from cardiomyopothy.

 gues my ? is how long can she live doing nothing, we know its no\t in any major organs, not in bones or brain, thank you sheri from ohio

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Anonymous's picture
Anonymous
Replies 4
Last reply 5/29/2011 - 7:37pm
Replies by: ValinMtl, lhaley, Anonymous

Hi Val,

Thinking about you and hope IPI is working for you. Please post and let us know how you're doin.

Postive thoughts & hugs are going out to you!

Jan

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glewis923's picture
Replies 3
Last reply 5/29/2011 - 6:58pm

Thnaks for ya'lls concern.....I was wondering if any one would ever miss me.  Seriously, I miss talking to the board and should not be so "wierd" sometimes.  I have been reading the board some; I hope your doin' fine.  I just feel so helpless at times about myself that I feel i have nothing to tell anyone else that won't reflect my own doubts.  SOoooo many people are in bad shape, and i don't know how to "fix" it - 

 

I completed round 4 of IPI,  a CT scan revealed "stable" with existing lung tumors, and no futher abdominal spread....so this is good news i suppose.  Kinda bad news is brain tumors- about 14 i think (were like 12, so 2 small new ones, which is dicouraging after WBR and SRS)-  but, the others are stable and a couple have shrunk a little.  I went through another round of 4 SRS (Novalis TS) to try to zap 2 resistant tumors again plus the 2 new ones.

 

Hope all is well with everyone.  Was quite saddenend by recent deaths of some board members.  Just been at a loss of words lately......Love, Grady.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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Terra's picture
Replies 3
Last reply 5/29/2011 - 5:03pm

We are trying to decide between TIL and IPI.

 

My question right now about IPI is about how long it takes to know it is definitely not working?  I know it takes sometime and time is of the essence - if you were not an ipi responder could you post how long it took to know that for sure?

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Anonymous's picture
Anonymous
Replies 3
Last reply 5/29/2011 - 4:18pm

I have been thinking about Rocklove & Jim from Denver because these 2 wonderful people always took the time to help other Mpiper's.

Anyone know how they are doing?

Doug

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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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