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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Jls377's picture
Replies 3
Last reply 11/19/2012 - 11:26pm
Replies by: Jls377, Mandi0280, Valentine

I am looking for any bit of guidance and am so grateful for any responses. My cousin was diagnosed with stage 3C Nodular Melanoma a month ago. He went to his primary to have an infected mole on his neck looked at as was misdiagnosed for about a month and a half before the primary burned off the area and had it biopsied. A lot of time was wasted. He had surgery on his neck to remove the tumor and verify that lymphnodes in the area had been impacted. He then had a second neck surgery to remove a second tumor that appeared after the first surgery. The surgeon said that he wanted to hold off on doing a neck dissection because he may need to go back in with several more surgeries to removed new tumors as they sprout up. They are suggesting a series of radiation for several months. Overall the doctors have been less that optimistic and seem to be taking the attitude that it is so aggressive that they need to treat as it evolves. This includes radiation and then regular ultrasounds/pet scans to catch any new tumors and then they would do additional surgeries. I am really looking to hear feedback on any successful treatments people have experienced. Also what ones to steer clear of. There is also a thermotheapy that has come up as an option. The doctors have told him that he is too far along in the staging to do many of the cancer trials or chemo. Any feedback would be so helpful! Positive stories would be uplifting!. I am open to hearing about any and all treatment options including more holistic approaches. Thank you for taking the time to hear our story.

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Richard_K's picture
Replies 10
Last reply 11/6/2012 - 2:22pm


The good news - Yesterday I got the results from my last scans.  Everything is stable, no change, and I’m thrilled to have completed 32 months on Zelboraf.

The not so good news - For the second time in a row, my bilirubin is high and I am on another one week holiday.  Assuming the bilirubin returns to normal with a retest next week I will restart Zelboraf but probably at 720mg twice per day.

I’m looking forward to breaking that 3 year mark and I hope bilirubin cooperates.


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Tina D's picture
Replies 9
Last reply 10/26/2012 - 9:46pm

I have been back on Zelboraf for a few weeks now and my eyes have been somewhat bloodshot for the past few days and my vision is not as clear as usual. I intend to see an eye Dr if it doesnt clear up, but was wondering if anyone else has experienced this? I can still see to read, and such, but it is slightly blurry and my eyes are burning a little. None of it is terrible... but it is noticable.



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Anonymous's picture
Replies 8
Last reply 10/25/2012 - 12:25pm
Replies by: Janner, Webbie73, Anonymous

Janner, someone like you that is/was Stage I many years ago, do you say "I have melanoma" or "I had melanoma" or "remission" or "NED" or "cured", etc...? How do you describe/explain it? I often get stuck when speaking trying to figure out what I really mean & what is accurate. . I have melanoma, I had melanoma, etc...?   I know in the big scheme of things this is relatively unimportant, but just wondering

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himynameiskevin's picture
Replies 10
Last reply 10/24/2012 - 9:14pm

hiMyNameIsBrenda and im kevin's wife.

I wanted to write to you all and share a moment of love that i had recently. Most of you know kevin went home to the angels on 9/30. Well, i've been like a roller coaster lately with my emotions, and about two days ago i broke down. I was lying on my side in our bed staring at a picture of kevin. All the typical questions were running through my mind, "why didnt treatment work?" "How am i supposed to live life with out you", and i found myself apologizing to him, because he was strong during the two years he dealt with this disease, and if he could be strong then i could be strong too. I kept asking him if his spirit  was still with me even though i couldnt physically see him. and then the most wonderful thing happened.

I gave kevin a dream catcher some time ago to help with his nightmares. I have it hanging from the fan. The fan wasnt on and the one window in our bedroom is boarded up. But the dream catcher was spinning uncontrollably, as i stared at it, it came to a slow stop. And i knew, he was answering my question. He is still with me and always will be.

Was it him? who know for sure. but i choose to believe it was a love sign from him to me.

So i decided to share this story because this disease is cruel and has taken many of our loved ones, and although it takes their physical body it doesnt take their spirit. Kevin is still here, and he showed me that day.

I also want to sharer a song with you all. Kevin had a favorite band called WHY? and he had a special relationship with them, so much that they wrote a song about him. That was the kind of influential person kevin was, to have a famous music group write a song about him, well he was just lucky that way, so here it is....just copy and paste this

i just want to remind all of you that there is always HOPE. and everything will always be okay. love your loved ones unconditionally and remind yourselves that you are STRONG, can and will get through this. I know at times you'll feel lost, but nothing is ever really lost, and you'll find your way soon enough...

with that, i send you all love and healing vibes.

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Jamietk's picture
Replies 1
Last reply 10/24/2012 - 9:22am
Replies by: Linny

7 year checkup at MDA in Houston went well. So well that they said coming back in the future is optional. I'm officially NED a little over 7 years from Stage IIA. They are comfortable with me having annual checkups at home w/ my Derm now if I am, but are happy to have me there if I prefer. They did say that my Derm won't do chest xray or bloodwork, but also told me that recent studies/research may soon change protocol so that they also do not do chest xray or bloodwork for stage II anyway. So all in all, a happy day. I love MDA and believe they saved my life. But it feels good to be told they are ok if I don't come back!!  Never been so happy to be told to go away.   Now............gotta address some heart issues. Might be getting a stint or bypass soon (i'm only 41). But 7 years ago I was afraid I wouldn't be here this long, so what's a little heart repair?  I spent many years of anxiety with melanoma, testing, and questionable spots in my liver, lungs, and breast. It feels good to be past the anxiety of melanoma on a daily basis. I still respect it. But I don't fear it. And it put many things in my life in perspective, such as heart surgery. It's just another bump in the road.


Hope this gives everyone encouragement, especially those stage I and stage II survivors. I wish you all many years of health and happiness and abundant prayers, and I'll be back next year with another thumbs up. God bless everyone on this board.

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i just came home from seeing my Oncologist .  The test are in, and i am still neg for for Melanoma Cancer.  I still give God the praise and glory for the good report.  It has been a very long year, and I don't have to go back for blood work, or test until April of 2013.  My choice after much prayer was to not do chemo which was recommended.  But I decided to stay the course and go for test which I have done this past year.  So I would like to encourage you to keep your head held high and lead on a loving God.



I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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kevin2012's picture
Replies 6
Last reply 10/31/2012 - 6:23pm

Hello Everyone,

My wife is 19 weeks pregnant with our first child and diagnosed with melanoma last Tuesday.  It has been a very difficult time for mostly me - she has rock solid and positive as always.  Back in August my wife finally went to a GP to have the mole looked at - about the size of a quarter then and noticable bumpy.  The GP scheduled her for a biopsy mid-September with a plastic surgeon, and then last week he called my wife while I was at work, told her she had a type of skin cancer, referred her to a nose-ear-throat doctor for last Friday, assured her she "wasn't going to die or anything" and told her to call the nose-ear-throat doc to get the details.  She called the NET office right away, but they did not have any paperwork yet so we waited until Friday to be told that it was "a very bad kind" of melanoma.  Having very limited knowledge of what questions to ask (what stage?!!), we left the office in tears only to be referred to another NET doctor this Thursday (had to cancel our first ultrasound appt :( ) at a major cancer hospital in Toronto.  I have been learning more and more about this disease in the last couple weeks, from the thickness and size I can guess that her melanoma is stage II but there hasn't been any node testing to find out if this has metastasized.  I am deathly scared and feel that this is not moving fast enough - I have noticed the melanoma grow even since the Sept 18th biopsy.

My wife is wonderfully optimistic about the whole ordeal, but I just want to get the excision done - enough "consultations" already!  Is this the normal process?  Is there anyone I should be contacting?

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awillett1991's picture
Replies 9
Last reply 12/18/2012 - 1:08am

Literally JUST finishing my 2nd dose of IPI and got scheduled for a brain MRI Thursday and extra labs to check pituitary due to extremely low (.03)!! TSH and very minor headache. Cortisol and Total T4 are completely normal. My doc actually called my labs"wacky". Talking about steroids again although I just got off these for stopping Zel. Can anyone shed any light on this? If you have pituitary problems and need steroids can you continue on Yervoy??


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Jydnew's picture
Replies 7
Last reply 12/21/2012 - 8:54am
Replies by: POW, Snickers60, tuneseo, clientcommon, jupeter41, Anonymous

After receiving the DTaP vaccine last June, my husband got very sick - mild head cold, but extreme fatigue (like, can't get out of bed for 20 hours a day) for 12 days, until he got on an antibiotic and flonase and whatever it was got kicked by day 14.  He had his semi-annual oncology appointment in August and bloodwork was fine - first year with no scans.  In late September, the whole family had a very mild cold (we have 2 little girls), and he was completely laid up again with the debilitating fatigue.  This time, he go the antibiotic at day 4 and kicked it by day 7, but is still a little touch and go - still a bit tired, but who can tell if that's normal from having a 7 month old and a 3 year old...

Anyway, his doctor wants him to go to a rheumatologist because she thinks it's an immune problem.  He saw an ENT today and is being tested for mono, but even if it is mono, recurrent mono is an immune issue, so... does this warrent a call to the oncologist?  I don't know what for, but I think immune deficiency, and it scares me.

He's 10.5 years NED, stage iiia.




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jaredmiller16's picture
Replies 5
Last reply 12/18/2012 - 1:15am
Replies by: tuneseo, clientcommon, jupeter41, Anonymous

I am in Afghanistan right now, otherwise, I would have just asked my doctor, which I intend to when I get back in a few months.

I had a mole on my cheek. Although I have several questionable moles, this one was never in question. Just there.

I noticed it has raised a week ago and sure enough, it looked like there was a pimple in it. 100% sure it was a pimple.

Regretfully, I had a meeting with a General that day and did not want to have this massive pimple type mole thing on my cheek, so I popped it.

However, its been a week, the scab feel off and the mole is not even threre anymore.

How bad did I screw things up?

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NYKaren's picture
Replies 6
Last reply 12/18/2012 - 1:13am
Replies by: tuneseo, clientcommon, jupeter41, NYKaren, Anonymous

Hi all,

As most of you know, I just began a trial at Rockefeller University Hospital.  It is a trial of a topical drug called DPCP; if you Google DPCP + Melanoma + Australia, you will see that the drug has had good results in Australian trials. 

They are looking for about 10-12 more recruits.  The team came highly recommended by my docs at Sloan Kettering.  The trial # for is NCT01711684.

I went this morning for "Day 0 Visit".  They took 2 biopsies, one each of a mel met and of healthy skin on my leg.  Also did ultrasound, etc.  They put sensitizing doses of the drug on a few places, now I get to watch and wait and hope for a reaction in 14 days.  Yup, hoping for a rash!

I hope this is of help to someone(s).

All the best,


Don't Stop Believing

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lrkg1234's picture
Replies 7
Last reply 6/21/2013 - 6:16pm
Replies by: Linny, Anonymous, tuneseo, clientcommon, jupeter41, POW

My husband Scott is doing the Dasatinib study here in Indianapolis for Stage IV mucosal melanoma, C-Kit positive. Primary is in the esophagus, inoperaable at this time.  He just had his first scan and I wanted to share the results and see if anyone else has experience with Dasatinib or is involved in a trial.

He was diagnosed August 7th and took about 5-6 weeks to get opinions and begin any type of treatment.  We don't know if there was any spread during this time while there was no treatment going on. 

He just had his first 6 week scan and there was a 14% growth in the tumor, but no new spreading.  It's hard to say whether the Dasatinib is working or not, because the baseline scan was about a month old. 

So, if the cancer had spread 30% while there was no treatment and then only now showed a 14% growth there was some reduction and progress.  It's not great news, but could be worse.  He is sticking with it another 6 weeks to see what happens before moving on to something else. 

His doctor is Leslie Fecher at IU health.  She was recommended by Dr. Sharfman at Johns Hopkins.  She was his understudy.  She's been great and is a melanoma specialist.  Just wanted to share in case someone else needs a doc and lives in the area.

We have no idea about spreading rate etc.  Any thoughts??

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akkcak's picture
Replies 10
Last reply 12/18/2012 - 1:19am

I am stage 3 and currently in my 3rd month of interferon. I was told the new guidelines say no scans unless there is evidence. This concerns me. Wondering if others were told this by their doctor?

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Chicago_Michelle's picture
Replies 16
Last reply 12/18/2012 - 1:20am

Hello! My mother just got diagnosed last week with melanoma. She has recently moved to the Chicago area. We don't know what stage it is yet. The next step is the surgery to remove the larger area. She also has a couple of places on her back -- one of these she was told to get checked out a year ago but she never did. 

We have an appt with Dr. Choi at the University of Chicago and another appt this week with Dr. Bines and Dr. Kaufman at Rush. We have an appt with MD Anderson on Nov 2.

Does anyone have any insight into any of these doctors or any other recommendations? We will go wherever we have to go.



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