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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swissfarm7's picture
Replies 10
Last reply 4/4/2013 - 7:52pm

Next month the Melanoma Research Foundation and Seattle Cancer Care Alliance are presenting a melanoma symposium.  It's a free educational event.  Have you ever attended something like this?  Would you, if given the opportunity?  More to the point, what does it say about my "new" life that the thought of going to a melanoma seminar lights my fire? ;-D



Keep on keeping on.

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Gene_S's picture
Replies 3
Last reply 4/4/2013 - 7:20pm
Replies by: Phil S, Anonymous

The purpose of this thread was not to upset any readers here. The real purpose was to educate you that MD Anderson is a business. The CEO has put demands on employees to generate more income! In order to generate more income are they giving you more tests than are necessary? Keeping you in the hospital for extra days. Unneeded medication that is not to your benefit?

I am quite sure that the people that you deal with, the doctors and staff are outstanding and are trying to do the most they can to help cure your melanoma.   Is this the beginning of "Profits over People?

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

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Acacia's picture
Replies 4
Last reply 4/4/2013 - 4:15pm
Replies by: Tim--MRF, Tina D, Acacia, jmmm

My husband was diagnosed with Melanoma on January 31, 2013 and began taking Zelboraf on Febuary 1st. He was told he'd be on it for the rest of his life (or till it stops working pretty much) Has anyone else been told they'd have to take these pills for the remainer of their life? This struck odd to both of us.

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Hello all,

I read over on that the FDA has published June 3 as the announcememt date (I hope I'm getting this right--hopefully Tim can clarify) for decisions on both of GSK's drug submissions--the BRAF inhibitor and the MEK inhibitor.  I'm not sure if that's a firm date or not--again, maybe Tim knows.

The drugs were submitted separately as monotherapies, so I guess there's the possibility that one could be approved and not the other, although it seems that both will be approved.  The fact that they will have separate approvals begs some questions, such as: what happens if someone stops responding to Zelboraf...will the MEK inhibitor be added to the Zel, or would the person be prescribed both drugs?  When someone first begins the BRAF drugs, will we be able to receive uniform insurance coverage for both, or will it be an insurance company-by insurance company decision?

You can hop on over to the site and look at the entire post...I didn't know if it would be permitted to cut and paste it here.


Don't Stop Believing

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Phil S's picture
Replies 6
Last reply 4/4/2013 - 1:26pm

Okay, I usually don't quote Hillary Clinton, but I feel like fighting melanoma really does take a village of people. Not only do we need the medical professionals (doctors,nurses, scientists), we also need the drug companies who run the clinical trials, the family and friends who care for our children, all the people who offer us emotional support and prayers, and our mpip family who truly understands our struggles and fears! When Phil went stage 4 in July 2011, I was so scared and unsure of our future! When the nasty beast spread to his brain only three months later, I thought our family was doomed! I felt for sure, we would be losing Phil soon! But, we got ourselves to MDAnderson, Phil did six rounds of biochemo and the TIL trial. He finished the TIL trial in May/June 2012, and we are thrilled to say that today in Boston, he got STABLE scans again, 11 months post TIL cell day! So, we have another 3 months of treatment free living, and get to enjoy the Spring with our children, and more importantly Phil feels really well. So, THANK YOU to all who have helped us fight against the very bad odds, we love our teams at MDAnderson and Dana Farber! No one has ever taken Phil's hope, they all encouraged him to keep fighting! So Stay Strong Warriors, you are all AMAZING, and dont forget to kiss/hug your caregivers, the village truly starts with them! God bless, Valerie (Phil's wife)

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Anonymous's picture
Replies 2
Last reply 4/4/2013 - 11:05am

Just wanted to know you're in my thoughts.

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shellsbells's picture
Replies 15
Last reply 4/4/2013 - 10:46am
Replies by: natasha, Anonymous, POW, Janner, shellsbells

Ok, so, I got diagnosed with in situ on the left arm. I went in probably within 6 weeks of noticing the first signs of change. The papule was so small (pen or pencil tip size) and black. Dermatologist almost did not send it. Said she thought it was "nothing to worry about". Well, it was in situ. My measurements were pretty small, I cannot remember what.. but the pathology report showed the surrounding skin was "normal" and "cancer free". I got it removed with 0.5mm surrounding area within 2 days of results. I keep reading all these horror stories of it metastisizing.. it scares me. I am an RN so, I think the worst.. I cannot see just statitstical reassurance, and look into the worst case scenario... My dad's brother died of melanoma 8 yrs ago at 43.. but it was melanoma caught late..

I need some reassurance, or success stories, or personal experiences, or tips!.. please help



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pawillcox's picture
Replies 2
Last reply 4/4/2013 - 9:29am
Replies by: Janner, Anonymous

Hi everyone,

In August 2006 I went to a skin cancer clinic concerned about an abnormal lesion on my right forearm. After being told it was nothing to worry about I did just that.... I left it for over 6 years! I have recently had both my husband and his mother battle cancer, fortunately my husband is now in remission, unfortunatley my mother in law is terminal and at 45 only has a year to live.

I am now quite cancer paranoid and it consumes my thoughts daily.... as a result I went to my GP feeling quite stupid.... he too siad it didnt look like much but was willing to biopsy it to give me peace of mind. A few days later, a saturday morning I received a phone call from the medical centre asking me to come in urgently.... It was pretty obvious what the results were but I went anyway.

My path results were Superficial Spreading type, Breslows 0.3mm (great I know!) Clark Level II. It DOS NOT MENTION ULCERATION AT ALL! The reason why I was worried about the lesion and decided to get it checked out is because it had been scabbing up and weeping for the last year.

I have since seen a plastic surgeon and have has a wider reexcision, path results came back with no further evidence of disease

Plan going forward is to see the plastic surgeon 4 monthly.

My concern is that no lymph nodes have been looked at, no bloods taken, no scans taken. Just the surgeons belief that it could not have spread.

I know my original path results were quite good, I was lucky.... however when my husband had cancer just over a year ago he too was told that his surgery would be all that was needed, that the cancer was contained and that he could go on surveillance for a year. Luckily for him the did a blood test before they sent him home. They called first thing the nect morning and his ldh was through the roof, started 3 months of chemo the next week.

I need some sort of assurance that this is gone, not just the surgeons word because quite frankly I have had enough of being let down by doctors.

I am only 26, have two little girls and dont want to continually have melanoma on my mind.

Any advice?





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Gene_S's picture
Replies 5
Last reply 4/3/2013 - 6:35pm
Replies by: Theresa123, Anonymous, Beth, Phil S, Linny

Dissatisfaction with the institution’s president Ronald DePinho 
and his top executives—at a time when the administration is pressing 
the faculty to meet aggressive financial targets that critics say are 


Here is a link to where there are problems.


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

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Cielo's picture
Replies 11
Last reply 4/3/2013 - 4:13pm
Replies by: Anonymous, benp, Bubbles, POW, Charlie S, Fen

I think it is politically incorrect of you to post this topic here.  You are NED, so please go somewhere else where you can plant your turmeric seed and add some guayabano along with it. 

For those of us whose hanging on to whatever little hope we have left, who are looking for encouragement and not discouragement,  don't need to read into such topic in this forum. 

My husband is currently admitted at MDAnderson.  After going through a ten-day WBR, his brain has swelled up and as the only caregiver, things became worse for me to handle so I got him admitted.  We have been here for a week and hoping to get out this weekend. We never felt threatened in anyway that treatment was lacking thereof, infact, we are treated like royalties.  Our main Onc here came to talk to me for Plans B and C.


Believe in the healing power of laughter, love and PRAYER.

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Clareh's picture
Replies 3
Last reply 4/3/2013 - 2:31pm

I was diagnosed about a 1 1/2 years ago with melanoma.  The melanoma was on my upper abdomen.   I had a wide local excision as well as a sentinal lymph node biopsy.  Lymph nodes were clear. Melanoma measured right at 1mm.  Three months ago my oncologist felt an elarged lymph node under my left armpit.  I had a follow up appt last week and the lymph node was even larger and there was another enlarged lymph node in my right armpit.  I just had a CT scan yesterday . . . now have to wait for my appointment for resutls.  I hate just waiting . . . I am the type of person that likes to gather as much information as possilbe and prepare for what "might" happen (just the way I am) . . . any opinions?

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Has anyone in this trial experienced significant bloodshot eye(s) in this trial? I am in cycle 12 and had an issue last month paused trial meds for 10 days while using a prescribed eye drop. Eye cleared in about 8 days. back on meds for 10 days and bloodshot is back.

I have had amazing results in the trial with very few side effects - minor rash/itching and some wart like growths on my legs (they weren't much to look at anyway).


If you fight, you may lose, If you don’t fight, you will lose.

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Sharmon, just was reviewing forum and noticed you have not posted in awhile.  Hope Brent is well and you also.

Keep us posted maybe we can help.

Susan...Sister of  Angel Peter...12/6/2012

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Janet Lee's picture
Replies 2
Last reply 4/2/2013 - 7:43pm

I don't recall seeing much posted here about tumors not responding to radiation.

Don had cyberknife on an asymptomatic brain tumor, and a week later it was growing, bleeding, and swelling to the point that he was eventually paralyzed on one side and had speech problems.

Just wondering if anyone else has had this experience.

Also, does this mean the radiation to his pelvic area might have had the same affect (haven't had followup scans yet


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Anonymous's picture
Replies 3
Last reply 4/2/2013 - 5:21pm
Replies by: Ranisa, mel123

Hello- I have not been diagnosed with cancer, but I have a lot of moles (nearly 200), and I've had several atypical ones removed, including one that caught me off guard and scared me last week. Many are in places that are hard for me to see, let alone keep track of. I want to keep on top of them, but I have tried photography at home and I am just no good at it. My dermatologist was not able to recommend a professional photographer, either. Can anyone recommend a photographer near Baltimore, Maryland who would be willing and able to do mole mapping / total body photography? I only want the photographs for my own use, so I do not necessarily need them to be highly formal or systematic; in fact, some of the more complicated options I have come across on the web look like they involve software that I won't even be able to run on my Mac. I would be happy with high resolution digital pictures with good lighting and clear focus, which I just can't seem to manage on my own. Thanks for your help!

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