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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Speedster's picture
Replies 11
Last reply 8/26/2015 - 11:28pm

Today I was patient #1 at Baylor Samons for the Yervoy (Ipilimumab) vs. OPDIVO (Nivolumab) Phase III Clinical Trial.   Designed for Stage III patients - resected tumors, NED to determine if either is effective as an adjuvant therapy.

The trial will have 800 participants across the country.  Who else is in and what are you experiencing as you ramp up the treatment? 

Nothing noticeable for me after the first treatment today.  

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/26/2015 - 1:05pm

I just found out i have two liver mets 8mm and 5mm.

What is the standard treatment for these?

 

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Randy437's picture
Replies 7
Last reply 8/26/2015 - 10:59am
Replies by: kpcollins31, pookerpb, CHD, Anonymous, BrianP, Randy437

Are CT scans as effective in finding mets in the small intestine as they are in any other area of the body?

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Thought it was interesting my biopsy last January says the left supraclavicular tumor is braf wild type. Just found that out from my NIH records cause couldn't get the report from the saint Louis records folks. Well maybe I could have but they said they didn't have it so would have had to go to another building.

Anyway my first biopsy in June 2013 of the t10 vertebrae said it was the braf vc80001 mutation or something like that. Kind of explains why zelboraf in 2013 I was the docs only 2nd patient of over 1000 that progressed on it. Kind of explains why the taf Mek although it kept lots of tumors from growing some grew like crazy.

So I guess I have some tumors with probably a certain amount of the vc mutation or maybe that first test was not done right. The rest of my tumors are braf wild.

Kind of weird in my opinion but explains in my mind anyway why the braf stuff failed me so bad.

Justvthought some folks might find it interesting in their situation. Usually I heard it's the other way around. A person is braf wild and they become braf vc.

Artie

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momof4boys's picture
Replies 5
Last reply 8/25/2015 - 6:39pm
Replies by: dfeng, BrianP, kylez

So I am awaiting a bronchoscopy this week to biopsy the enlarged lymph nodes in my chest and would like to think about possible treatment plans that way if it is positive then I can have a somewhat educated conversation about treatment rather than being confused. So I've already had ipi the 3mg arm of the ipi/interferon trial. I finished all doses. So I've been reading here the last 2 years trying to keep informed on different trials/drugs. So since I've had ipi already does that mean I wouldn't be able to do the ipi/nivo trial and is that trial even available. I live around Omaha and would possibly be able to travel some, it might be pretty hard to do that all the time I guess cuz of my kids but what other trials are showing promising? I agree with what Celeste told me about trying a trial first so an anti-pd1 doesn't disqualify me for something else. I would sure appreciate any and all thoughts about what might be a possible game plan from some of you stage 4 people. Thanks

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Mamarose0403's picture
Replies 9
Last reply 8/25/2015 - 12:22pm

I was diagnosed with a-b lentigo v malignant melanomas. Two shave biopsies were performed and pathology showed Breslow depths of .18mm & the other at least .6mm with tumor present in deep margins as well as peripheral. I was referred to an oncology team but after reviewing my labs they referred  me to a general surgeon without seeing me. I have since had the the excision but was told not to test lymph nodes at this time. The surgeon cut between 6-8 centimeters down into my forearm and about 6 inches in length. Recovery is not going as easy as I had hoped. I have quite a bit of nerve pain that the prescribed medication doesn't seem to help with and I am unable to bend my arm due to the incision nor can I straighten it because the skin was stretched so tightly when sutured.  My arm is also very cold in certain spots affected by the surgery. I was only told to be concerned if the surgical site was hot not ice cold. I am still worried about lymph nodes and metastasis but the discomfort it taking a front seat. My follow up isn't until sept 1 even though I have made an effort to make it sooner. I thought I was pretty tough in general but this experience is making me feel like I'm being overly dramatic which is not usually my nature. I have a Jewish mother for that department! Please help.  

Leahheart

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courtney2015's picture
Replies 6
Last reply 8/25/2015 - 11:23am
Replies by: casagrayson, courtney2015, michaelinsocal, Anonymous, 273c

Hi there. I had a Malignant Melanoma removed from below my left ankle almost 6 years ago. I'm down to a yearly full body check with dermatologists, luckily nothing has really popped up. Just wondering if anyone has had anything similar to this. In the last 8 weeks I've had a irregular tiny brown spot grow out of no where. It's on the same foot as my original melanoma along with being on the same side. I showed my GP today and she is concerned. I'm waiting to hear from the dermatologists about whether they want to biopsy it straight away or it can wait till I next see them in 2 weeks.

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lmhl's picture
Replies 6
Last reply 8/25/2015 - 10:34am
Replies by: lmhl, Anonymous, Andrew1725, momof4boys

Hello

After hearing President Carter's diagnosis of melanoma and his family history of pancreatic cancer, I have a question.  Has anyone ever read about the relationship between the two cancers.  My husband recently passed away from melanoma and his father passed away from pancreatic cancer.  When my husband was first diagnosed our oncologist spoke about a genetic link between the two.  Has anyone else heard about this?

President Carter's announcement was difficult to hear.  My husband experienced melanoma spreading to his brain as well.  

Thank you.  WIshing you all the best.  

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Birdlo's picture
Replies 8
Last reply 8/25/2015 - 4:25am
Replies by: Anonymous, Mamarose0403, stars, Birdlo, CHD, Bubbles, DianaD

Hello,

I'm recently diagnosed with melanoma on my ankle, 41 years old. T1a, superficial spreading, 0.58mm, Clark's level 3, no ulceration, dermal mitoses <1/mm2, no regression. 

I'm scheduled for a wide excision surgery and the surgeon also recommended sentinel lymph node biopsy, though optional. He did reassure me that the chance of finding anything in the nodes was about 5% or less, but he thought I might want to have that extra reassurance and he assured me that other than mild pain at incision site, it would be very unlikely that I would suffer side effects from the biopsy. I agreed to the biopsy with the surgery. I WOULD like to have that more certain assurance that we are in the clear.

Anyone here with thoughts on this? From all that I've read online, SLNB is NOT recommeded for lesions under (about) 0.7mm, at least those without any other features present such as ulceration, faster mitoses, etc. So is there some reason I shouldn't have the SLNB done? I'm not ooking forward to having any surgery, and certainly not anything "extra", but I'm willing to go through it if in fact it will give me more certainty of being free of future effects of this tumor. 

Any helpful comments appreciated. 

Thank you!

Louise

 

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casey81's picture
Replies 2
Last reply 8/25/2015 - 3:29am
Replies by: stars, 273c

Hello, all.  For the past few weeks, I've delved into internet research trying to gain some insight.  Naturally, most of the answers I've found haven't been very comforting.

I've had two severely dysplastic moles excised, and two more that came back as mild.  I'm sure I have other that are mild, but I'd say maybe only two more.  Well, three, because I have a new small light/dark brown freckle on the side of my foot.  That one has me worried, but I'm getting it looked at this Friday.  In total, I'd say I have about 60 moles, including a few on my scalp.  Most are small and round, with about 5 being larger and a little darker.  My grandmother had melanoma on her nose about a decade ago.  Well, I think it was melanoma..she had a sore on her nose for years before she finally went and got treated for it.  

I say all of that because through my research, it's hard to find out where I fit in the spectrum of risk.  My derm said that I didn't qualify for FAMMM, but the criteria online suggests that I do.  Of course, I'm more apt to believe a doctor, but it's unsettling.  I tan decently (though not anymore, I avoid the sun like a vampire), and have dark brown hair.  I don't remember having a severe sunburn, but I've probably spent a collective hour in tanning beds years ago.  It seems like getting this cancer is unavoidable.  What kind of odds do I face?  Certainty?  A coin flip?  A roll of the dice?

This forum seems full of really kind, brave people, which is what encouraged me to sign up.  Thanks for listening.

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I received insurance approval yesterday for the ipi/nivo combo, even though I've had prior ipi.  I really had no side effects with the ipi before, but I know this time things may be different. I wanted to let folks know options are out there.

 

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jtheisen29's picture
Replies 3
Last reply 8/24/2015 - 3:51pm
Replies by: jogo, jtheisen29, dentholla

 

 

Hello All,

 

It's been such a long time since I have logged in or have thought about cancer. Almost 6 years ago I came on in search of support and information for my twin sister who was just diagnosed with stage 3b melanoma while 5 months pregnant. When I first came on I saw some may stories of loss. It weighed so heavy on my heart, and I mourned people and their stories. I prayed that my sister would be one of the survivors. I searched everyday for survivor stories to share with her, and to give myself some hope that she would be able to have a chance to fight and win. I promised myself early on that I would try to come back on the forums and update so that others searching for survivors would have the same hope that I needed 6 years ago. Each year that goes on I have the blessing of thinking about my sister's cancer less and less. I ususally feel a little pang of stress during her annual scans. Annual Scans! I remember when they were every 3 months, and then 6 months! We have lost many melanoma friends along the way and the beauty of this life and our gift of it is not wasted on us. My sister is doing fabulous and travels plenty, plays volleyball 3 times a week and loves life. Her son who she was pregnant with will turn 6 in January and is a true miracle. 

 

I remember thinking why are there not a lot of survivor stories on forums. Does anyone beat this disease, and someone said that they are out living life not posting on forums. If you are newly diagnosed and searching for the same hope that I needed 6 years ago I hope you read this and it brings you some comfort. Keep fighting and be your own best advocate! 

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I had a insitu melanoma in 2006. Recently I had a moderate dysplastic mole removed. My derm re excised to get clear margins.I still had repigmentation after a month, so my derm went back in an excised the skin completely to prevent regrowth. The biopsy from that procedure came back normal. Does that mean that that the procedure was unnecessary? Is it common for a moderate dysplastic mole to grow back normal? Was it likely to turn dysplastic again? I just want to make informed decisions if this comes again. I will discuss with my derm next time I see him, just want to get some other opinions. Thank you!

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Dugandoog1234's picture
Replies 12
Last reply 8/24/2015 - 11:02am

29 year old healthy fit male. From Alberta Canada. Diagnosed with stage 3 melanoma on May 15th/2015 location started on an existing mole located bottom middle of back, which then spread to left groin lymph nodes.Surgery was done June 30th/2015 removed cancer from back and all lymph nodes from left groin. PET scan and follow ups showed cancer has all been removed but radiation sessions are being booked to be on the safe side. Recovery had gone well and the full leg compression stocking is a must to limit swelling. My question to all is the cancer centre is offering me the 1 year interferon drug. I have read many posts and web pages and am leaning towards not doing the drug but would love to hear success and positive feed back. I'm very interested in natural paths as well. 

Thanks everyone

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davekarrie's picture
Replies 8
Last reply 8/24/2015 - 12:54am

Well, it is no unfortunately official, my biopsy in my abdomen last week is positive for melanoma. So its in my lungs, abdomen and a C7 neck vertebra. I am most worried about the neck at this point.  We go back to mayo aug25, they are still testing for the gene mutations to determine treatment. Just so many questions, will they operate on any of the tumors?  The radioligist said the abdomen tumor is free floating, I am starting to get a bit of pain at times in my neck, don't know if thats from the met or I am just paranoid. I feel great otherwise, and am ready to fight this beast!! Much love to all #noonefightsalone!

Live life to the fullest and enjoy each day! #noonefightsalone

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