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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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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Anonymous's picture
Anonymous
Replies 3
Last reply 8/26/2015 - 3:15pm
Replies by: Marianne quinn, Anonymous, Thandster

First off.. what does "pre-melanoma" mean?

Second, my husband just noticed a grape size bump under his skin near a spot that once had a pre-melanoma. It was removed but not in that big circle around it that they did on the main growth.

He finished ippy two months ago and just got a spot biopsied from his liver. They think it is melanoma so the plan is to go on opdivo when the patholgy comes back.

Will they have to do a big circle removal (wide area something) on this spot? Or are bumps under the skin next to the incision a typical thing?

I wish i knew more about cancer to understand what its going on.

Rebekah

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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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JoshF's picture
Replies 21
Last reply 8/27/2015 - 5:33pm

I know many here would say MRI is crucial for brain surveillance but my onc says without symptoms that a CT and/or CT/PET would suffice. I question whether I should just ask for it or find another onc who would be more agressive with scans.

Do symptoms usually present themselves? What are common symptoms?

What is likelihood of Stage 4 getting brain mets?

Are treatments effective for brain mets? Radiation? Does ipi, keytruda and others pass the blood-brain barrier?

I'm giving myself a lot of stress just thinking about this lately. I feel fine but we all know what stress does to us...I'm just in an anxiety phase lately and just trying to work my through. Posting here and getting feedback usually helps.

Thanks...be well!!!

Josh

Let's work for better treatments....for a cure!!!!

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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 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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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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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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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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Anonymous's picture
Anonymous
Replies 0

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momof4boys's picture
Replies 5
Last reply 8/23/2015 - 6:32am
Replies by: Jubes, Bubbles, momof4boys, kylez

So I was diagnosed 3b in June 2013 when it was found on my right calf. Snb tested positive so I had a complete lymphadectomy of right groin. In Oct I started Ipi and was able to complete all doses including maintenance doses. Since Im on a trial I get scanned every 3 months with a ct and every 6 or 12 with a pet. So I had a ct in May, Pet in June and both were fine. I had a ct yesterday that showed a lung mass on each lung plus the lymph nodes are enlarged. One was 1.4 cm and the other was 1cm. They have decided to go down my throat to biopsy the lymph nodes. I just want some input here, seems like pretty rapid growth. I'm wondering about this biopsy and the pain level with that as well as if it does turn out to be melanoma what path do you all think I should take? I'm thinking since these are over 1cm and there is lymph envolvement that it probably is melanoma. Any input here is greatly appreciated. I am a mom to 4 teenage boys and I feel like I need to be on top of my game here.

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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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akamo's picture
Replies 5
Last reply 8/23/2015 - 6:15pm
Replies by: akamo, jaricha4, stars, Anonymous

Hi. Well my husband had the WLE Monday and he goes in on August 25th to get the pathology report. He had the surgery done at the dermatologist office by a plastic surgeon and now we are wondering where he should have his 3 or 6 month follow-up appointments? Dermatologist or melanoma oncologist? Btw, he was a 1A, clarks level II with clear margins after the biopsy. Assuming everything is good because the doctor said he likes to take more than called for in the guidelines. Btw, incision is 11 cm long for a centimeter biopsy. Do you suppose that is good or ridiculously excessive? My husband is a bit mad but I tell him it is over now so hopefully overkill will guarentee no return of the melanoma. Anyway, mainly wanting to know where everyone does their follow up visits. Thanks~Robin

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Jacqueh27's picture
Replies 11
Last reply 8/23/2015 - 9:24am

I have not posted in a while. My daughter is still plugging along after four rounds of Yervoy and now going on 6th round of Keytruda. Her tumor has shrunk from original 14 cm now down to 9 and while we hoped on her first scan after four rounds of Keytruda she would be able to get it removed, she has now been told she needs a year more of treatment. The cancer is still contained to liver - brain still clear and her numbers and LDH are all in normal range and she feels better than ever. They say that the heat activity is no longer considered "hot melanoma" which I'm a little confused about but they say that means activity is much lower. Does Keytruda take this long to fight this? Can anybody shed some light?

 

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