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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Replies by: miu2, NYKaren, boot2aboot, nicoli

Hi guys,

i will target my posting for those of you with hair loss and trying to figure out options...as i looked for something to slap on my head that was'nt

A ugly

B hot as heck

C affordable

i came across stuff that looked like i belonged in Iran...or looking like i was 80 years old...or looking like a bad biker chick...BUT

i found this really cool site (of course not in U.S.) that answers all of my problems with chemo cap...

it is made from a company called Buff

and they make a product called Buff UV visor evo2 which is way hip and cool...they make this visor in all kinds of combos, totally reversable, totally adjustable and wearing it doesn't make me feel like 'ugly victim'...it's great for UV protection and you can wear it when your hair grows back and still look hipcat...

http://www.buffwear.com/catalog/index.php/cPath/53_90

even though it's a UK company, you can still order from the states...i thought the melanoma website should maybe sell these here...

 

stay away from the pink ones...i opted for the black one...i thought that was 'appropriate'...

boots

don't back up, don't back down

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Anonymous's picture
Anonymous
Replies 5
Last reply 5/31/2011 - 9:37am

Has anyone had an issue with an increase in eye floaters with their diagnosis?  I've noticed an increase (or maybe they were there before and I didn't really concentrate on them like I do now?).  I have been to the eye doctor who said things look ok and brain MRI's say things are fine. 

Guess it's just another thing to stress us out!  :) 

Thanks!

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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Gene_S's picture
Replies 10
Last reply 4/18/2012 - 7:14am

 

Scientists reverse stance on sun and cancer: Now they admit sunlight can prevent skin cancer

Learn more: http://www.naturalnews.com/032533_sun_exposure_skin_cancer.html#ixzz1Nrwxbjb9

I am a firm believer in this. The only way to know your vitamin D levels is to have them tested.

The best test is the "25-hydroxy" vitamin D test.

Best wishes,

Gene

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Hope Returning's picture
Replies 6
Last reply 7/27/2011 - 8:11am

Looking for an active kidney cancer discussion group for recommendation on kidney surgeon for a melanoma long term survivor withe tumore (met?) to kidney that needs to be operated.

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Gene_S's picture
Replies 5
Last reply 5/31/2011 - 12:33pm
Replies by: Gene_S, Anonymous, LynnLuc, boot2aboot

see:   http://naturalstandard.com/news/news200602007.asp

Please note that there is a difference in CoQ10 products.

The best one should have "Ubiquinol" on the label not "Ubiquinone".

Best wishes,

Gene

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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shellebrownies's picture
Replies 5
Last reply 5/31/2011 - 8:00am

Don had his chemo treatment yesterday afternoon/evening and he tolerated it extremely well. His liver function tests that Dr. Lawrence had ordered did show a drop in the high levels, but was not stable enough to earn him a reprieve on the trial, so they went ahead with the chemo.

His pain at this time is extremely well managed but is IV; the pain management team still have to figure out a way to get him this level of control with oral medications. Well, we take one step at a time, right? : )

Michelle, wife of Don, Stage IV

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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Terra's picture
Replies 3
Last reply 5/30/2011 - 6:03pm

Does anyone have any comments or knowledge on TIL or IPIand brain mets. 

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sheri47's picture
Replies 6
Last reply 5/31/2011 - 7:34am

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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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 7
Last reply 6/1/2011 - 3:16pm
Replies by: Carol Taylor, kfalkinburg, Anonymous, jackiewin

Has anyone got IPI (yervoy) paid for by their medical insurance company??

 

How diffficult was the approval process??? What medical Insurance company approved IPI??

 

Has Medicare approved IPI yet??

 

Thanks

Jamie

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emlauritsen's picture
Replies 8
Last reply 5/30/2011 - 5:30pm

I'm 5 years post stage 1b and will be having my yearly derm exam in July. I've changed doctors so I'm not sure which blood tests are used in addition to the exam. I don't see an oncologist any longer since the SNB was negative and my primary care doctor will fill out the lab request form but she was puzzled as to what tests to order. What blood tests are used to monitor for signs of recurrance or changes in a post melanoma patient?  I'm not sure I'm asking this right, so in other words what blood tests should my PCP order?

Thanks!

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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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