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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Snickers60's picture
Replies 4
Last reply 8/13/2012 - 8:09pm

Precious hubby Wayne and I are packing for MDA- Houston - leaving Wednesday.    This is our 6th trip since learning of Wayne's

mets in March - 2012 !   He began ZEL on April 23rd at full dosage (8 pills a day) and at 7 week PET SCAN he was CLEAN and we renamed

him "NED" - dontcha just love that NAME !     

He will do his second PET next week, so we have a little scanxiety going on !   We feel we will get a GOOD REPORT, but with MELLY,

you just never know.   Would appreciate all prayers you might lift up for us. 

He had mets to lungs, liver, sternum, spine, leg/bone.    We found it ACCIDENTALLY (we know it to be Divine)

 while scaning his heart for Plaque during a regular yearly physical.    

His history:    

Colon Cancer with early spread - 1990 - age 40 - year chemo and max radiation

Earlobe Melly in 1999 - 50 years old - cut it off, did Senteniel node biopsy - no treatment - lots of follow up

Melly Mets - March 2012 (13 1/2 years later) to lungs, liver, sternum, spine, leg bone.   

June 14, 2012 - Renamed -   "NED" 



Nancy (devoted wife of 3 X Warrior Wayne) 

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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Replies by: GaylaB, Anonymous, Tina D, buffcody, Richard_K, BonnieLea, H555, Janner

Wayne had colon cancer with an early spread 9 years before the initial melanoma behind his earlobe and then 13 1/2 years between the mole and the mets

to lungs, liver, sternum, spine, bone.     Was just wondering if any of you had any other kind of cancer other than MELLY?

Nancy (devoted wife of 3 X warrior Wayne) 

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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Gene_S's picture
Replies 1
Last reply 8/11/2012 - 11:01pm
Replies by: Gene_S

Here are many articles (2580) on melanoma for my fellow warriors doing research on a cure for their melanoma!

Best wishes to all who are fighting this beast....   Gene


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

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Tina D's picture
Replies 8
Last reply 12/4/2012 - 7:31pm

I have actually struggled quite a bit over writing this, with so many suffering so much. My hope is to bring encouragement to weary ones.

I started on Zelboraf in May, then had to be taken off for nearly 3 weeks due to severe reaction ( hideous spreading rash). I went back on at a reduced dosage ( 720 twice a day). Tumors were in more than one area of my pancreas, in the messentery infront of pancreas, one near my aorta, one in my back muscle. I had my first PET/CT on Monday the 6th and on Tuesday the Oncologist reported that scans show NO evidence of Disease. None. Everything is gone. He was so thrilled to share this news with us, and we are praising God for this wonderful answer to prayer.

The current plan is for me to continue on Z at current dosage, re-scan in abt 3 months, then possibly lower the dosage to minimize side effects if scan is still clear. I am having the full range of side effects, it seems... though after this news, I dont mind them as much!

Again, I hope others can and will find encouragement from this.

With a grateful heart


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Anonymous's picture
Replies 0

Hope Kevin is better.  Please keep us posted with Kevin progress. You both are in my prayers.

Stay Strong


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fcrawford's picture
Replies 2
Last reply 8/12/2012 - 1:20pm
Replies by: ylkay, Snickers60

My mother is coming up on her last few months by is spending her last days on this earth sorting through bills and struggling to pay every day expenses. please click on the following link and help her, every penny helps. also if you can share this link to everyone you know.

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And I thought my surgery was extreme!

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

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yoopergirl's picture
Replies 5
Last reply 8/11/2012 - 12:17pm

It has been a month since my er visit to Madison, had to have a pleurul effesion and a Pleurodesis and a chest tube put in. Was in the hospital for 6 days and during that time developed a DVT from my thigh to the knee. It has been a long recovery, still on shots every night for the clot and that will be 3 months. My cough is so bad yet and have lost 20 pounds, do not qualifly for the clinical trial right now. My local MD had a ultra sound done on Weds and the clot is dissappering. I am so shaky it was hard for me to come on here. I want to thank everyone who was concerned and asked about me, I so need your prayers. I lost weight because I can't eat nothing taste good and can't stand ensure.   Joan   

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lisamom2lucas's picture
Replies 4
Last reply 8/10/2012 - 2:52pm
Replies by: Janner, Anonymous, lisamom2lucas

I have a strong family history of melanoma, and I am also covered in moles.  Have had at least 10 biopsied.  All have come back normal or mildly dysplastic.  I had my yearly exam on Wednesday and for once they didn't want to remove a bunch, which was nice.. however -- one did concern him.  It is on my left thigh.  I had it removed and biopsied about 3 years ago.  it came back as mildly atypical.

I never thought much of it, but I did notice the pigment was growing back in it (almost immediately after it started healing).  My moles were all removed by shave biopsy (which I'll never let them do again!) and most of my other moles have SOME pigment growing back.


The derm said it was suspicious, because it is growing back very weird looking (asymmetrical, 2 different colored browns, bigger than pencil eraser, etc)

He said it could definitely just be the way it is growing back through the scar tissue, but wants to do an excision on Monday to be sure.

I have bad healthy anxiety and with my family history I'm losing it.  What are the chances that mildy dysplastic has turned into Melanoma in 3 years?  Also I've had my yearly exams every year since the biopsy and no one has mentioned removing it (Had a different doctor this time)


I know I want KNOW until a biopsy.. but can anyone relate?

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Well, the initial shock of my 5 yr. NED status being possibly taken away from me has finally eased up. So now it's research, research, research time!!!  I'm hearing promising stories of Yervoy and Zelboraf. Someone also suggested I look into Dr. Burzynski. Has anyone had any dealings or experience with his research?  Right now I'm still in the waiting game mode for the next set of scans to see what the lung met does in the next 3 months, with the size only being 5mm they are saying that it will not light up on PET and the CT will tell more in November. I was really questioning my Dr.'s opinion on this until I found out from alot of you all saying that it was the "protocol" with the smallness of the met. Although I do have another Oncologist appt. scheduled in 2 weeks so she may wanna speed things up.  I know my research should have never stopped 5 years ago but when I hit the 3 year NED mark, I just let the M word slip to the back of my mind and thought I was gonna be one of the very few that kicked it with the Interferon.

And of course, this could not have come at a worse time. I just found out that I am gonna be a 1st time Grandma in December and was getting ready to enroll in Nursing school. My father has been ill and He needs me as his care-giver.  So now instead of being able to completely focus on my new Granddaughter, the health of my dad and school, I get side-lined with this crap!!!!!  I know there is a chance of the met being benign but also the chance of it not. Just trying to get my "ducks all in a row" so I can be ready to make some really big decisions. Other than this crap going on I am extremely healthy and a young 45 yrs. old. I blazed through the complete Interferon process  and am ready and willing to Kick Mel's A** Again. I know I can do this but just need the research and thoughts and prayers to go into this battle armed!!!!!


Thanks for listening!!!!


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deardad's picture
Replies 30
Last reply 8/15/2012 - 8:13pm

Today and 12.40, 9th August my father passed away in my mums arms in a private hospice with his two daughters, myself and my sister Rachel.

He complained of a stomach pain on Wednesday night and we got into this lovely private palliative care hospice the next day where is rapidly declined. He fought all the way still believing he would see the neurosurgeon next week. The nurse thought it was probably his liver. 

I am totally numb and feel so incredibly lost.

My deardad is gone.

Nahmi from Melbourne

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Gene_S's picture
Replies 3
Last reply 8/10/2012 - 10:16pm
Replies by: Gene_S, RMcLegal
"I Will Survive"   by Donna Summers
Change the words to suit your condition... Song # 24 at

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

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lrkg1234's picture
Replies 6
Last reply 8/13/2012 - 4:16pm
Replies by: Janner, lrkg1234, Gene_S, teach

I am writing on behalf of my husband, Scott, 54 years old.  Diagnosed with melanoma today. 

It's a tumor in the esophagus, about 6 cm.  We are waiting on the CT scans, just got the pathology report and a GI Scope.

  We have no idea where to seek treatment.  We live in Indianapolis, but are willing to travel about anywhere. 

We are not sure whether we should focus on a good thoracic surgeon or the rareness of the cancer aspect being so rare.  There is not much information out there. 

So happy to find potential help.


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When I was researching a cure for my melanoma this would have been a Godsent!

Best wishes to all who are fighting this disease....  Gene

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

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