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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jrjrjr's picture
Replies 1
Last reply 4/3/2012 - 9:16pm
Replies by: Janner


I have had numerous dysplastic nevi removed.

I am trying to determine if I have FAMM or dysplastic nevi syndrome.

Does anyone have FAMM or dysplastic nevi syndrome?
Can you share how you were recognized with the syndrome?
Did your dermatologist recognize it?  Did your oncologist?   Did your genetic counselor?
What is your understanding of the criteria for FAMM or dysplastic nevi syndrome?
At what age where you diagnosed?

Thank you.


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I have a friend who is a breast cancer survivor.  She said it was very important not to cut through the tumor, or it can spread the cells.  is this the same with an early stage melanoma?  It seems it would spread it, wouldn't it?  Online I have read numerous times where melanoma has margins involved or the tumor was only partially biopsied.  I worry that someday they may say this does indeed spread the tumor. 

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Does anyone know someone that has had numerous dysplastic nevi and no melanoma?

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Does anyone know someone that has had numerous dysplastic nevi and no melanoma?

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triciad's picture
Replies 3
Last reply 4/3/2012 - 6:00pm
Replies by: triciad, Janner, LynnLuc

Hi Everyone,

I have a question for our local experts.  If you have a tumor, let's say a sub-q, and someone takes a biopsy of it, which opens it up but does not take it out, does that let the melanoma spread in your system?

Thanks for your help!!!


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Lilylove414's picture
Replies 3
Last reply 4/3/2012 - 5:37pm

So I did a little research. I used to love donating blood, and once you have melanoma you can't do that anymore. Bummer. What I can't find the answer to is if we can leave the country. I want to go to the Bahamas one day! Oh home treatment is getting easier. I have yet to stick myself with the needle haha. I'm 25 and I make my mom do it. I think she's going to make me do it soon though. Gah! Needles never used to bug me, now I want to be as far away from them as possible.

Oh! I went to see Hunger Games with my boyfriend and his family. His mom and I LOVED it! I can't wait for the 2nd one! Eeee!!

I'm also learning that eating healthier helps me feel pretty good! I'm not a health nut by any means but sodas have a limit now, and ice cream is consumed less often. Baby steps. I like going on walks, too. I'm determined to be a sexy lady haha.

Gotta say God has been super good to me. This hasn't been a smooth ride but honestly this is easier than my parent's divorce, and I believe my faith has a lot to do with that. They split up 12 years ago before I became a Christian.

Anywho...let me know if I can pray for you or someone you know! I spend a LOT of time at home and could use something to do haha. Other than daydreaming about having a dog again. And being hot. Girl stuff I guess.

Take care lovelies!

If God is for us, who can be against us?

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Terra's picture
Replies 5
Last reply 4/3/2012 - 2:47pm
Replies by: LynnLuc, Erinmay22, Bubbles

We are considering going to Memorial Sloan Kettering for the Anti PD 1 trial but we are from Canada and are trying to get at least an approx cost for enrolling in a trial in the states.  I spoke with them and they are unwilling to tell us any info unless we go down for a consult.  Our Oncologist has already talked with Dr. Wolchok about us but before we commit (we are a youngish family with 3 kids under 5) we need to know the approx cost - Derek is not willing to go down and "waste" money on something they may not work so I trying to convince and need this info first.


Hope someone can help (he as a late responder to ipi and it worked for abotu 6 mos)


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yoopergirl's picture
Replies 5
Last reply 4/3/2012 - 1:23pm

This week I am only taking 5 mg in the morning, and then next week nothing. I am feeling more muscle aches then normal and wondering if this is a side effects of tapering down. We are planning on leaving for 2 weeks after Easter and vacation in the Ozarks and sure don't want any side effects while we are gone, will keep in touch with my Oncologist if I need to. Just wondering how others do on getting off the steriods.

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Anonymous's picture
Replies 2
Last reply 4/3/2012 - 10:33am
Replies by: Anonymous, Janner

sorry....I can't find the long list of tips from searching the archives. Does somebody have it handy....a friends brother stated IL2 today.


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Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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deardad's picture
Replies 3
Last reply 4/3/2012 - 3:27am

Thanks for everyone's input so far regarding my dad's treatment. I feel quite powerless at the moment. There are very few trials here in Australia at the moment. The only option is continue on BRAF while some tumors are stable others slight increase and add the MEK to it. We meet his oncologist on the 11 of April to discuss a plan.

Can I ask why we would remove the three/4 subs in and perhaps SRS surgery on liver tumors which are stable. The one in the spleen could perhaps be removed too or spleen removed? I know that must sound really crazy and I know it won't eliminate the disease but surely it will give my dad more time. What are you're thoughts.

There may be an E7080 trial in Sydney and we are Melbourne and BEZ235 plus MEK162 inhibitor trial in Melbourne.

How poor is that selection? 

Sorry feel flat


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fdess056's picture
Replies 3
Last reply 4/2/2012 - 7:46pm
Replies by: fdess056, LynnLuc

Hello, fellow warriors.  I completed Yervoy on March 1 and asked onc what's next .. He's recommending Zelboraf.  I did some research which states that your body builds up resistance to it and eventually, it stops working.  My question is should I begin to use it if I'm stable or have a only small increase in size or new small  tumors?  It seems that i could watch and wait before starting since I'm feeling well and living normally right now ( I am able to run every day).  If i can remain this way for even a few more months before starting, I'll have that much more time before the Zelboraf stops working.  Past history: surgery,and standard radiation on my forehead and neck, Interferon, SRS on my knee and brain and just recently completed Yervoy.  Most recent scan shows 6 lung mets largest 8 mm  Any thoughts or suggestions would be appreciated


FrankD Brooklyn

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imablack's picture
Replies 5
Last reply 4/2/2012 - 4:38pm

Today, I lost my brother to melanoma. He was diagnosed last February after spending four years in Iraq. He will be missed terribly but his death will help others. In a last unselfish act, he has donated his body to melanoma research. I miss you so much, Ricky. I love you.

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BrianP's picture
Replies 8
Last reply 4/2/2012 - 10:13am

I'm in my 4th month of interferon treatment.  All things considered it is going well.  I wanted to see what other patient's oncologist recommend for their scan schedule.  From what I've seen it seems like most recommend a brain MRI and petscan every three months for the first year.  I'm coming up on my 6 month scan and the oncologist is only recommending the petscan.  I'm insisting on the brain MRI as well.  Was curious what others are doing. 


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Anonymous's picture
Replies 1
Last reply 4/2/2012 - 7:06am
Replies by: jim Breitfeller