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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Roxy1453's picture
Replies 5
Last reply 8/15/2012 - 9:39am
Replies by: Janner, Roxy1453, Anonymous

I had the last 3 months off! No appointments, no problems! I went in today for another scan.

I have no new spots!! But, the spot I have had behind my knee is still there. It has gotten a little smaller, but not enough. We talked, In the past, about surgery to remove it but it could cause me to have drop foot. Today we are back talking about surgery. Dr. Is going to talk to surgeon to see if it is still risky. I won't know until Thurs.

He did talk about the anti pd1 being available in the next 3 or 4 months. He also said I could just wait 8 weeks and have another scan to see if it changes.

Any good ideas for me?



"I can do all things through Christ who strengthens me." Philippians 4:13

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Gene_S's picture
Replies 2
Last reply 8/15/2012 - 10:59pm
Replies by: Anonymous
Vitamin D can improve your health - in so many ways.
Vitamin D expert, John Cannell, M.D. will talk about this
on our next show ---> post your questions - here:
This Thursday @ 9pm est
(2) ways to hear our show - LIVE!
By phone - call:  760-569-7676
And, enter your access code:  815676#
or, listen to the show by computer with the link below:

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

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Eileen L's picture
Replies 4
Last reply 8/14/2012 - 3:27pm
Replies by: natasha, Anonymous, Eileen L

Just got my scan results from this past Friday, after being on the BRAF/MEK Roche trial (Zelboraf and a MEK inhibitor) for 12 weeks. The good news: The adrenal gland tumor shrank a bit more and the nodule in the lingular area of my lung is stable, both are basically non-reactive. The bad news, there is a new small lung nodule in my right upper lobe, just 8 mm.  Although non-reactive on the PET, apparantly mets this small frequently don't light up on the PET. Awaiting call form my doctor to discuss. I know that there are frequently non-specific lung nodules that turn out not to be mets, but I am bummed out!!!!!! Will post again when I know more.

Eileen L

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Anonymous's picture
Replies 2
Last reply 8/14/2012 - 1:56pm
Replies by: Anonymous, washoegal

Is it something precancerous?  Does it need further re-excision?

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vladimir3d's picture
Replies 6
Last reply 8/15/2012 - 7:49pm
Replies by: alicia, Janner, vladimir3d

someone i know was diagnosed with stage 2 melanoma, lymph node biopsy was performed and one lymph node came out bad, yet it was still stage 2 localised??  isn't spreading to lymph node considered stage 3?  Lymph node was removed.

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Aneal12's picture
Replies 1
Last reply 8/14/2012 - 8:30am
Replies by: natasha

About a month ago I had a moly removed and it came back Abnormal.  I went in last week to get a larger piece removed and when I sent back to get my stitches out they said it still came back abnormal and to just watch it.  Has anyone had this happen?  What happened?  I have a TON of moles and I am going to get a full body check, but I am concerned!

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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.



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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.


Charlie S




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


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:




Aged Garlic Extract

Eugenol (Cloves)



Thank you for any info you might have.


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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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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!


Best wishes, Gene

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