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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FightingItinPA's picture
Replies 6
Last reply 8/22/2012 - 9:54am

melanoma on lower neck; 2 surgeries; last revealed no melanoma cells in lymph nodes.  However, thyrid follicles were detected and thryoid removed last week.    SO CONFUSED about whether or not to start the interferon treatments.   Any words of wisdom on what made your decision to do it or not?  thanks

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sc0tty2's picture
Replies 5
Last reply 8/14/2012 - 8:46am
Replies by: Anonymous, natasha, MichaelFL, sc0tty2, Janner

Was diagnosed last week after biopsy showed .3 mm depth.  WLE tomorrow.  I was told to get an xray of chest and eyes.  Is this fairly common?  From what I've read, it doesn't seem like .3mm would warrant the xrays.  Thanks.

 

Scott

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Charlie S's picture
Replies 24
Last reply 8/26/2012 - 4:15pm

25 years, a quarter of a century, two and a half decades, six years shy of half of my life, I have had melanoma( suffered from, my doc likes to tell his interns)  Stage III unknown primary in 1987, BIG surgery and then melanoma lay in wait nine years until  1996 when the diagnosis became Stage IV..  

Seven recurrences , fourteen surgeries, Well over two hundred infusions of different drugs, cumulative medical bills over the years surpassing three milllion dollars, one pharmacy bill alone of one hundred and eighty six THOUSAND dollars. Have had it seems, every complcation and side effect of surgery and treatment known to man. Hired doctors and fired more.  Married, divorced,, launched four startups, returned to college, made lots of money, lost lots money, my girlfriend took her last breath as she died in my arms due to complications of melanoma;; even was desperately close to being homeless.

I have made friends and lost friends, learned what love truly is and encountered enemies

And here I stand before you with the score at 25 for me melanoma.  Yes, you melanoma have won some battles and wounded me deeply to my core, but in the war that that has been before me  with you. the score is still Charlie 25/Melanoma Zero. and I am ahead.

Numerous times in the past I have encouraged you to give me your best shot and you certainly have, but the overall score is mine to own.

To others new and old, my story is not unique.  People do survive.  Yes the treatments and surgeries can be harsh, the decision to choose which one can be paralyzing.  And yes, sadly, some people do not survive.  Since none of us are getting out of here alive anyway; make your choices wisely.

There is no silver bullet I can say to any of you.  However I would urge people to try (hard as it may be) to make medical decisions based upon science and not emotion.  As an example,I read somewhere here that diet change alone would be better than interferon.  That statement is not supported by science, but is appealing for emotional reasons

Something else is the statistical numbers game.  Do not get caught up in it.   In 1987, there was not an AJCC a "chart" to show my odds; in 1996 there was and it was 2% five year survival for me.  Not.

 For all I know, and for all I have seen, at the very best , any treatment for advanced melanoma is 20% success.  That is our lot.  

I do know however many people where surgery alone did it and they are alive, same with chemo, same with bio-chem, same with interferon, same with GMCSF, same with IL2, same with yervoy, same with Zelboraf, same with AVastin.  I also know an equal amount of people that no matter what treatment, died.

Yes, clinical trials are scientific experiments that use human beings as test subjects; but without participation, no new treatments will become available.

For me, I have been lucky that melanoma has became a disease of management; not easy mind you, but it IS possible.

For all of you, please know that it is possible.

Cheers,

Charlie S

 

 

 

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rrrule32's picture
Replies 8
Last reply 8/23/2012 - 9:34am

Hello,

Does anyone know if the following supplements can effect the way Zelboraf works?  My fiance is on Zelboraf, but I also just started her on a whole bunch of supplements.  Here is the list of some of the ones I'm curious about:

Resveratrol

Turmeric

Quercetin

Aged Garlic Extract

Eugenol (Cloves)

Fenugreek

 

Thank you for any info you might have.

Travis

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lrkg1234's picture
Replies 20
Last reply 8/7/2016 - 6:34pm

My husband Scott has stage 4 mucosal melanoma.  He has just been diagnosed.  There is no known origin. 

It has spread to the liver.  We are not able to do surgury because of the spreading to the liver. 

Scott is going to have further tests for mutations, a PET scan and more full coverage CT scan to see if it has spread to the brain. 

We were given 3 possible options for treatment:

1.  Interlewken-excuse my spelling, but you know what I mean.  I believe it's the same as Interferon. 

2.  Zelboraf, if Scott has the Braf mutation. 

3.  Yervoy, seems effective.  An option for now if the cancer has not spread to the brain. 

We were told that you need to decide whether to start with the Interferon or the Yervoy, because the Interferon won't work if you do the Yervoy first. 

It seems like it would be good to have the Braf mutation so that there is another option. 

Any advice is appreciated.  I'd like to hear about experiences that others have had with these drugs. 

We are sort of in a walking coma right now trying to process this all.  It's been overload on the brain. 

One plan was to go to MD Anderson or Dana Faerber for a consult and see if we can get any other options.  

Please help if you can, there is so little out there about this.  Lisa

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http://www.collabrx.com/melanoma

There is also more info on drugs and trials below the tester.   Gene

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

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Nell's picture
Replies 3
Last reply 8/15/2012 - 5:33am
Replies by: Anonymous, Gene_S

To Gene and others--Any particularly good recipes for smoothies and the like for building the immune system?

One voice can make a song; one life can change the world.

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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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