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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Gene_S's picture
Replies 25
Last reply 8/16/2012 - 9:29am
Replies by: jag, Charlie S, Randy437, Gene_S, Anonymous, Linny, Fen, MikeWI, audgator, cloudbrows

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Gene_S's picture
Replies 5
Last reply 8/16/2012 - 11:36am
Replies by: Linny, Gene_S, Anonymous

"melanoma and skin cancer – 96 per cent of people with melanoma did not have enough vitamin D in their bodies indicating they hadn’t had enough sunshine; and half of the melanomas were in places the sun don’t shine on, according to US research".

This is why all melanoma patients need to be tested for a vitamin D-3 deficiency!

see: http://www.canceractive.com/cancer-active-page-link.aspx?n=3210

Best wishes, Gene

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cloudbrows's picture
Replies 9
Last reply 9/2/2012 - 7:38am
Replies by: cloudbrows, Anonymous, Janner, natasha

Hi!

I just got news from my dermatologist on Friday that the mole he removed from my scalp behind my left ear was a melanoma. Considering what I'd been fearing for the last couple weeks, the news that it was about 0.5mm thick was incredibly relieving. Obviously many of you or your friends and family have been hit with much worse news. My doctor says that his initial excision was technically an evaluative excision and that I need to get a follow-up excision with margins of 10mm.

Has anybody had experience with larger excisions? From reading online, it looks like they're doing much narrower margins than they used to, which is wonderful. I'm wondering whether it'll be likely to require a skin graft and also whether anyone's dealt with surgery on the neck. The initial excision wasn't too bad - the stitches are itching at this point and I can't really turn my head to the right very well, but otherwise it's been fine. But a larger one worries me.

Obviously, though, it's hard to complain when the alternatives were so much worse.

Just curious to hear from other people since I get to wait until September 10th to consult with the neck surgeon.

Best,

Nate

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DanielM's picture
Replies 14
Last reply 9/30/2012 - 2:59pm
Replies by: _Paul_, MikeWI, washoegal, Janner, lunchlady, Anonymous, Gene_S, DanielM

            

               On August 03 the melanoma was removed of my skin (back). Based on the pathologist report, on August 10, the oncologist determined that it was on stage two, almost three. He suggested treatment like stage 3 with interferon. I will look for a second opinion in Houston, Tx( MD Anderson). But I am really scared of the secondary effects of the medicines available: interferon,http://skincancer.about.com/od/livingwithskincancer/a/interferon-side-effects.htm, Yervoy, Zelboraf, etc.

There are so many organic effects, including brain damages (of short duration...suppose). Actually, besides this cancer problem my overall health is good. I have metabolic syndrome (Diabetes, HBP, and triglycerides and cholesterol problems), but all those issues are in control with the parameters in good range. I made extensive research for these problems and together with my doctor with medicine, exercise and supplements I am in good health condition. Otherwise, these medicines for melanoma are a nightmare for anybody. The oncologist told us about that the interferon may provoque sucidal issues, and I researched that also affects your reasoning skills.

What I love more for my daily life and my work, as Mathematics teacher, is my capacity to teach Math to my students and teach them decision taking skills. I need to collect the most information available to deal with this new huge problem in my life,

Thanks and never give up to your life,smileyyes

DanielM

Do not give up never-try to be the best in what you do forever.

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Krha13's picture
Replies 3
Last reply 8/14/2012 - 11:48am

Hello, we have been lucky and my wife is coming up to 2 years on the Braf3 study having been randomised to Verumafinib. It seems very difficult to get information on complete responders. My wife was desperatly ill with lymphangitis in both lungs , a large left pleural effusion and left pleural mass- only walking a few steps with  Oxygen. Within 16 hours she was walking without Oxygen and has done well (adverse effects allowing). Scans improved quickly and clear at about 3 months. One small pulmonary slow growing melonama recurrence resected 5 months ago

Is my wife one of the longest survivors on Verumafinib?

What happens if the drug is stopped?

Cannot find any report of severe pain only on light or unexpected touch- is this a problem in others?

 

K A

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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" 

PRAYING HIS NAME IS STILL "NED" !    

THANKS GUYS !    PRAYING FOR GOOD REPORTS FOR ALL OF YOU BRAVE WARRIORS !!!

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

see:  http://www.livestrong.com/search/?search=melanoma&mode=standard&page=1

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

Tina

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Anonymous's picture
Anonymous
Replies 0

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

Stay Strong

MaryBeth

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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. 

 

https://secure.piryx.com/donate/k8F7FLaf/JoAnn-Crawford/enjoy-life

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http://www.youtube.com/watch?v=d8H4kd6ee94&feature=related

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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