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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Linny's picture
Replies 2
Last reply 7/9/2012 - 10:47pm
Replies by: Linny, deardad

Hi Nahmi,

I hope that things are still going well for your dad. I just came across a web page called the Australia / New Zealand Melanoma Trials Group and I thought you might find it useful. If you've already seen it, just ignore it.

http://www.anzmtg.org/content.aspx?page=currtrials

Stage III, Unknown Primary; 1 positive node in left axilla

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Iowa98's picture
Replies 9
Last reply 7/9/2012 - 10:14pm

Hello,

New to the board and looking for some guidance.  My father was diagnosed with Stage IV Melanoma in January of this year.  He has been on 4 treatments of Paxil/Carboplatin, but recently his scans showed that the treatment was no longer working.  We are trying to get him into a PD-1 trial, but live in Iowa so the travel to the coasts to participate is difficult.  If we are unable to get inot a PD-1 Trial, we would like to consider Yervoy, but want to understand the risks.  His doctor also recommended Tamazolide, which I'm not thrilled about as it is not very effective.  Any stories/recommendations?  Wish there was a crystal ball.....

Thanks,

Jessica

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Hi Everyone:

I was just wondering if anyone has had experience with radiation and Zelboraf.  Is it possible to have radiation on an external met when taking Zelboraf or is it common practice to stop Zelboraf until the radiation is complete? If the two are not compatible together, Why is this?

 

Thank you!

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mrssam1979's picture
Replies 6
Last reply 7/9/2012 - 5:37pm
Replies by: DeborahG, Anonymous, Janner, mrssam1979

Three years ago I was diagnosed with Stage 2 Malignant Melanoma at 29 years old.  I have a family history, I am fair, and I have had many childhood burns.  

 

Fortunately, I did not have to have chemo/radiation treatment but I do get skin checks twice a year. My doctor does a chest scan and lab work every year.  Do other patients with the same history as I have also have to get these done anually?  What are they looking for with these tests?  And finally, is it necessary to do it for every year? 

I am having two biospies this Wednesday. This will be my 10th and 11th shave biopsy since my original diagnosis.  All but one have come back significant abnormal but not MM.  One of the moles being removed is right below my nipple--very undesirable place to have a shave biopsy! :(

Sometimes I feel in dark about melanoma because I was an army wife and moved frequently, changing dermatologists often and being told various things.

 

Any help would be appreciated. Thank you.

 

Sarah

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Gene_S's picture
Replies 3
Last reply 7/9/2012 - 2:18pm
Possible resources for my fellow warriors that convention medicine is not helping!
 
 

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

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rjcravens's picture
Replies 3
Last reply 7/9/2012 - 1:48pm
Replies by: Linny, Richard_K, washoegal

Question to those taking vitaamins and suppllements. I am stage 2B, this is what i am currrently taking:
fish oil
synthroid...due to interferon damage
tumeric 1000mg
biotin 1000mg....trying to get my hair and nails to grow back
b50
calcium with vitD
vit D3
and a multivitamin.
should i be taking all this at once? Also, for those of you that found mass in lungs, what were your symptoms? I have had this annoying cough every take a deep breath that makess my whole lower lung area hurt, now its spread to back aand hurts really bad alongside my spine. I just had pet scan in first week june was negative. It just has me worried.

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Replies by: MaryD, LynnLuc, Linny, Gene_S, susanr

I'm from China and my sister was diagnoased with vaginal melanoma 2.5 years ago and now PET scans and CT scan both show that she lymph nodes in her lungs and her pelvic cavity (which we are not quite sure about ) coz the CT scan on June 30 shows the lymph nodes have shrunk a lot compared with the scan performed on May 31. Anyway, I want to take her to the States for accurate dignosis and for advanced treatment to control the progress of her disease. I am now contacting Moffitt Center at Tampa Florida and also MD Anderson in Houston. Anyone here who's also got mucosal melanoma could recommend one good hospital for us to go to coz I know without American health care insurance, it is very expensive to make this trip to get treatment, so we do want to make the best and right choice for my sister. Please kindly offer your opinions and thanks in advance.

Fenny from China

Make Each Second Count!

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Cracker's picture
Replies 1
Last reply 7/8/2012 - 11:58pm
Replies by: Swanee

I'm new to the forums. My sister is about to start yervoyI'm next week. Some history:45 yrs old, had a brain tumor removed sept.2011. In January was diagnosed with melanoma in the lungs and some inner skin lesions. Started Zelboraf and had been on it since January. She recently had a seizure and a MRI. The MRI showed several brain mets. Was told Zelboraf does not work beyond the brain barrier. So we are going to start yervoy. A could of days off of Zelboraf. Does anyone know how long the sun sensitive side effects last after taking the treatment?

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Question to those taking vitaamins and suppllements. I am stage 2B, this is what i am currrently taking:
fish oil
synthroid...due to interferon damage
tumeric 1000mg
biotin 1000mg....trying to get my hair and nails to grow back
b50
calcium with vitD
vit D3
and a multivitamin.
should i be taking all this at once? Also, for those of you that found mass in lungs, what were your symptoms? I have had this annoying cough every take a deep breath that makess my whole lower lung area hurt, now its spread to back aand hurts really bad alongside my spine. I just had pet scan in first week june was negative. It just has me worried.

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mlbjab's picture
Replies 18
Last reply 7/8/2012 - 11:28pm

A high school classmate of mine was just diagnosed with stage IV melanoma after having a fairly shallow melanoma removed almost 5 yrs ago with negative SNB.  He had GI issues and tests were run that showed the melanoma is in liver, lung and adrenal glands.  He chose hospice and no treatment.  Is there not a treatment or hope for him?  I know it is his choice, but if there is any chance??  He is young (30s) and has children and a wife. 

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Replies by: Jamietk, Mymlan, mlbjab, Janner

Hello all, please tell me this is somewhat typical, I'm scared..

First off, I am high risk for skin-cancer, which is the reason why I visit the Derm every 2 or 3 years for check-ups. I was born in Sweden, of Swedish parents. I'm a 36 year old female, blue eyes, blonde hair, fair skin...I probably have 100+ moles on my body. Spent 5 years in West Africa age 4-9, suffered a few severe sunburns, according to mom. I've been living in the Southern US for the last 20 years. Texas and Mississippi. Never been a tanner but I spend much time outside..Either way, I realize I am a high risk person. Never have had a problem until now.

June 6th I went to a Derm, picked one who is known to specialize in skin-cancer. He spotted a very dark mole on the back of my ear, I had seen it last year but didn't think much of it, I just thought 'wow that's ugly' but I've always hated all these ugly moles on my body. The derm regularly removes them prophylactically. So a week later I got a lovely call from the PA at the Derm-office, she told me the mole on my ear was a 2mm, stage 2 Malignant Melanoma. They refered me to MD Anderson. What the...? I know nothing about Melanoma except its dangerous. 

So I went to my appointment at Anderson, to meet the doctor and have a Sentinel Lymph Biopsy. Well, the first doctor comes in, starts talking about having part of my ear removed. He was, by the way, very unprofessional, I don't think he had even reviewed my records before coming in the room...to make it worse, he basically told me having one ear smaller than the other is really no big deal since " you never really see both ears of a person when you  are looking at them." Really? Wow. So now Doctor Number 2 comes in, with Doctor number 1...she proceeds to tell me that the whole thing may be a mistake and the path-report could be wrong!? At this point my head is spinning...So I ask if I need the Biopsy, she tells me that is up to me. Again. What? Who is the doctor here? I declined. So they tell me they want their people to look at the slides of my lesion and in a few days they will most likely call me and tell me the good news. Ok, great. 

They PA called me today to tell me it will be another 2 weeks because as of right now they have established that the lesion is an 'atypical melanocytic proliferation' but they haven't made a definite diagnosis of Melanoma, yet. They want more tissue from the original lesion to make a diagnosis. What is going on here? They haven't done one test, nothing. I'm scared. Is this typical? Nothing to worry about..?

"The journey of a thousand miles must begin with a single step" - Lao Tzu

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susanr's picture
Replies 6
Last reply 7/8/2012 - 9:31am

Hello Everyone,

I see many posts re: PET/CT scans.  Many of the posts reveal necrosis within many organs. I see some post Brain, liver, lung, etc.  My brother just had his PET/CT this week and had necrosis at the center of a left pelvic mass along with some nodes containing necrosis.  Had yervoy 12/2011, just finished Temodor and Abraxane.  Some comments I hear that it can be a good sign, bad sign,  or no significance.  Any comments to help offer some in- sight.   Doctor did not even comment on this but I see so many of us post this ?  Thanks so much...!!!!!!

 

Susan R.  NY

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I'm from China and my sister was diagnoased with vaginal melanoma 2.5 years ago and now PET scans and CT scan both show that she lymph nodes in her lungs and her pelvic cavity (which we are not quite sure about ) coz the CT scan on June 30 shows the lymph nodes have shrunk a lot compared with the scan performed on May 31. Anyway, I want to take her to the States for accurate dignosis and for advanced treatment to control the progress of her disease. I am now contacting Moffitt Center at Tampa Florida and also MD Anderson in Houston. Anyone here who's also got mucosal melanoma could recommend one good hospital for us to go to coz I know without American health care insurance, it is very expensive to make this trip to get treatment, so we do want to make the best and right choice for my sister. Please kindly offer your opinions and thanks in advance.

Fenny from China

Make Each Second Count!

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I'm from China and my sister was diagnoased with vaginal melanoma 2.5 years ago and now PET scans and CT scan both show that she lymph nodes in her lungs and her pelvic cavity (which we are not quite sure about ) coz the CT scan on June 30 shows the lymph nodes have shrunk a lot compared with the scan performed on May 31. Anyway, I want to take her to the States for accurate dignosis and for advanced treatment to control the progress of her disease. I am now contacting Moffitt Center at Tampa Florida and also MD Anderson in Houston. Anyone here who's also got mucosal melanoma could recommend one good hospital for us to go to coz I know without American health care insurance, it is very expensive to make this trip to get treatment, so we do want to make the best and right choice for my sister. Please kindly offer your opinions and thanks in advance.

Fenny from China

Make Each Second Count!

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