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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deesbabygirl's picture
Replies 12
Last reply 7/15/2012 - 9:30am

My daughter is 41 just had bisopy done dr called said stage 3 melanoma waiting to see derm and onocologist as a mother I am lost and heart broken but without much knowledge of Melanoma I don't know what to expect or what to research I need advise form someone as to how to deal with this emotional roller coaster!  at first she did not want to tell me then she did we cried but now a few days later I feel she is shutting me out of her life because she is so independent and dosen't want me to worry is this normal? I have told her I will go to the appointments with her but want to go armed with questions what do I need to ask?  thanks to anyone who can enlighten me on this.

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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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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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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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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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Nicky's picture
Replies 6
Last reply 7/13/2012 - 12:00pm

Hi everyone, I thought I would check in and let you all know that I'm still alive and kicking melanoma.

I had an annual checkup at the melanoma outpatients here in Brisbane at the Princess Alexandra Hospital this week and I'm pleased to say I am still NED.  The hospital doctor who I haven't seen before was having a hard time reading my history because I've had so many bouts of melanoma and yet here I am nearly my 13th year Stage III and still beating it.

I have updated my patnet under " Nicky" to help anyone struggling with this disease.  I remain positive and even though I am getting on with life, I always remain vigilant.

If anyone is new to this disease, it is not necessarily a death sentence, everyone is different.  There are still people surviving melanoma, they are just getting on with their lives and may not necessarily post.

This board has always been there for me along this journey and I just want to wish you all the best and thank you.

 

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justlittleoleme's picture
Replies 5
Last reply 7/13/2012 - 12:04pm

Well, because of the high steroids due to reaction to ipi, he is now dealing with aspergillious. He has fungal balls in the upper lobes of his lungs. He had a heimlich tube put in after the lung collapsed after his bronchoscopy. Week later, two chest tubes after a failed vats procedure. He currently still has two chest tubes. He is on IV anti fungal medicine voriconazole. I administer it at home. Oh yeah, forgot that at Tuesdays doctor appointment, picc line was put in.
Infectious disease doctor said this treatment takes a year. I would love to be dealing with this in a year, not reality for us. I believe we are rounding third base heading for home.
All in all, liver seems to have recovered from the ipi and we are still lowering the steroids. We started at 360mg of methylprednisolone. Now we are at 112mg!
His pain is being managed by mscontin and dilaudid. He sleeps a lot during the day, not so much at night. Pain management doctor is adding a stimulant during the day to try and keep him up during the day so he sleeps at night.
I am no longer working. He can't really be alone. Medications have him pretty woozy.
We seem to have moved from living to waiting to die. Not a good place to be.

We don't know how strong we are until being strong is the only choice we have.

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Karin L's picture
Replies 8
Last reply 7/13/2012 - 12:12pm

Hey everyone.  I try to stop in as much as I can but have been dealing with my own battle.  Last I posted I had a great post 1yr IL2 PetCT showing all tumor activity in the liver and lymph nodes gone....amazing.  Only one small area in the L5 S1 spine was lighting up and we took the watch and wait approach for 8wk scans to see if the immune system would continue to kick in.  HUGE MISTAKE.  Didn't make it but to 6wk scans which showed growth.  With 5 days I saw my Onc., Neurosurgeon, and 2 different Radiantion Onc.'s.  My spine is close to collapsing.  The pain became so extremely severe no amount of meds could touch it.  Surgery too risky at the time as well as Cyperknife too risky for fear of permanent paralysis.  All that was left was regular radiation to help with the pain which I completed my 10th treatment today.  The pain levels are FAR tolerable now.  I am scared.  I do not know what is next.  I have an appt. Monday.  We need to scan to see if the disease has indeed gone crazy elsewhere.  It appears there is a small pea size sub q on my arm  hanging out the last month(only outward sign I can find) but it hasn't been tested or anything yet.  Maybe IPI?  Probably not ANTI PD since you can't get in anywhere....I just don' know.  Possibly/probably surgery?  I dunno.  I feel defeated.  Beat to crap.  I stay strong I stay positive but this sucker  punch is getting the best of me today anyway.  Would love to do the Cabozantinib trial....all closed no chance. 

Jimmy B....I listen to every word/advice you give out.  Any ideas this time?  I really only see IPI as a choice and it makes me uber nervous since I had quite a few auto immune problems post IL2. 

We haven't even check the brain so who knows what might be going on there.  We really only get a day at a time with this disease.

Anything you want to give me feedback, good bad or ugly, I will take it. 

Karin

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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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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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bikerwife's picture
Replies 5
Last reply 7/12/2012 - 1:37am

Lynn started this medicine 4 pills in morning and 4 pills in the afternoon last Monday so we went for his one week checkup Tuesday. Dr. Shirai was totally overwhelmed he said I told you thuis would happen. The tumors on his body that you can see are visible disappearing. The ones that were the size of marbles are size of peas the one that was golf ball size is now marble size. They all are shrinking.

The blood was at 400 has dropped to 279.

The only side effect so far is a small rash in beard and around nose. Dr gave cream for this. Having bllodwork regular at home go back on 18 for another brain scan. Will have ct. Scan of chest and kidney in five weeks and hopefully that will show shrinkage also.

Our dr was so happy he hugged lynns neck and it made us feel so good. Having a caring dr is one of the main things u need in this fight.

May God bless each of you with strength and courage to continue on each and everyday.

What God leads u to he will. Lead you through

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natasha's picture
Replies 22
Last reply 7/7/2012 - 1:56pm
Replies by: Anonymous, natasha, Janner

Hi!

 What is the difference between severely atypical lesion and melanoma?

Does it mean severely atypical cannot metastize and melanoma can? Where is that border ?

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awillett1991's picture
Replies 4
Last reply 7/8/2012 - 2:11am
Replies by: LynnLuc, awillett1991

http://clinicaltrials.gov/ct2/show/NCT01621490

My onc mentioned this last week. I know it's all about the timingand it won't be for me. Not much info here but interesting they are looking for half the patients to have failed IPI. I do get frustrated with the entire clinical trials exclusion process but at least some can be helped. If I were a candidate, I'd start making phone calls!

~Peace

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Replies by: beatricefromPARIS, LynnLuc, Anonymous

Could anyone advise on where to be followed by melanoma specialists in Hong Kong?

This is for a dear friend of mine who is going to move there this summer  for work purposes.

Bad timing as he is currently awaiting for scan results and there is a suspicion that his melanoma (nodules which were excised) has spread. Which means he would have to start systemic therapy. 

He is in very good hands at one of the best melanoma centers in France right now.

Dilemna is to stay here being sure of an excellent standard of care or to go to Hong Kong with his family  where his new job awaits him but no hospital contacts!

Many thanks in advance for names/adresses and their track record!

 

 

 

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