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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squirrell68's picture
Replies 10
Last reply 11/15/2012 - 2:45pm
Replies by: squirrell68, EmilyandMike, jag, Phyllis in IA, Phil S, Anonymous

My brother has just completed his third round of bio chemo at the Sheba Centre, Israel. His scan after the second round showed 60% tumour reduction. This is my first posting and I would love to hear from anyone who has had a good response to this treatment. A quick summary of my brother's melanoma, he was diagnosed in June 2012 at stage 4 with an unknown primary, although it may be mucosal as a tumour was in his anus. He has extensive liver mets and a brain met, which has been treated with SRS, no other systematic treatment. He is BRAF and CKIT negative.

He is feeling 100% better and many of his liver mets symptoms have disappeared. I am trying to stay positive but between treatments I start worrying about the 'what ifs'. It would be so nice to hear from other people who have been through this treatment. We are from the UK but don't seem to be able to find anyone in the UK who has had biochemo or even IL2.
Tracey

Determine to keeping fighting.

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/15/2012 - 2:30pm
Replies by: MikeWI, Anonymous

My family member was just diagnosed with Melanoma of unknown origin (axial tumor). He will be having PET and MRI this friday and surgery next Tuesday for complete lymphnode dissection. They stage him at III prior to PET. They are suggesting Ipilimumab and Interferon.

Is anyone familiar with the Marshfiled group of oncology physicians and surgeons? If so, is he in good hands? Should they seek trials before going down the Ipil or IF road?

Thank you for any input, this board is invaluable.

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Anonymous's picture
Anonymous
Replies 6
Last reply 11/15/2012 - 1:31pm
Replies by: W., Anonymous, Fen, Janner, POW

"Globally near 40% of CMM patients develop clinical metastases 5 years or so after initial treatment". """dddddd  I

 

I didn't think it was as high as 40%, that seems quite high. . I thought more than 60% were caught in "early" "curable" stages

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cricket's picture
Replies 6
Last reply 11/15/2012 - 6:12am

Can anyone recommend a treament center and melanoma specialist in Charlotte, NC? Thank you!

Cricket

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Roxy1453's picture
Replies 2
Last reply 11/15/2012 - 5:26am
Replies by: aldakota22, DeniseK

This photo shows my friends and me having fun with pictures and chocking the cancer out of me! I try to always stay positive and have fun!!

Nancy

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

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Roxy1453's picture
Replies 3
Last reply 11/15/2012 - 3:15am
Replies by: Sandy11, Roxy1453, kylez

Well, I have no real answer for my rash! Dr doesn't think it's from the IPI it's been too long. But he doesn't know what it is. I haven't changed anything that I can think of and I have an allergies.

I had my PET Scan today and they couldn't read it very well because of the rash. I have to call Wed. He didn't see anything in my organs so that was good. The spot behind my knee looks like it shrank but he needs to talk to radiology about a term they used that he didn't understand.

I go back in in two weeks to check on my rash. I'm on prednisone and tapering off by then.

I guess I wait one more day for the results of my scan!

Nancy

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

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DeniseK's picture
Replies 15
Last reply 11/15/2012 - 3:04am

Well, Pet Scan today, turns out to not be so good.  It appears that there are 5 tumors.  One on my arm which I knew about, one in my right breast next to original surgery site (this one may be a lymph node) and 3 tumors on/in my right lung.  One is very large and looks like it's next to my spine.  I will be discussing surgery tomorrow with my surgeon to hopefully remove all of these!  I've read that people can survive lung involvment for years.  I'm trying to research as much as I can but feel kind of overwhelmed right now.  Can anyone give me any proven treatments or experiences to share that can help me and my family have a better outlook on this?  I need some hope right now that I can beat this!! 

Thanks so much!! 

Love to all my fellow warriors!!

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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jenniebee922's picture
Replies 3
Last reply 11/14/2012 - 6:58pm
Replies by: jenniebee922, POW, Janner

Hello all,

I know few, or none, of the people on this board are doctors, but I do know many of you are familiar with pathology reports and what to be concerned about regarding melanoma. I also have some experience with this since my mother is currently a stage III melanoma fighter, but I am reaching out for some help because I am confused about the results of my infant son's biopsy (he is 3 1/2 months). Needless to say since I am familiar with melanoma and its ugliness through my mom's battle, when my son was born with a pigmented mole (congenital nevus) on his right butt cheek, most people thought it was "cute" but to me it was concerning. The mole was about the size of a dime, highly irregular borders, uniform brown color (then parts darkened) and asymmetrical. 

The first dermatologist I took him to told me to go to NYU Pediatric Dermatology about it bc of the way it looked. I decided to first consult with my mother's dermatologist since he knew our family history and he seems to have taken all the right steps in helping treat my mom. Upon first look he said "oh no, thats nothing, just an early surface birthmark" ...or something to that effect. Somewhat reassured, I left it alone. When my son was about 2 months old, I noticed the mole darkened a bit, slightly, but noticeable and there were 5 "dots" around the top portion of the mole when there previously had been 3. No "ugly" changes, but changes nonetheless. I took him back. My moms derm said lets just take it out to ease my worry, and that hes sure it would be nothing.

So last week my son underwent a scoop biopsy and  yesterday the doctor's office called saying the doctor wanted us to come in for a follow-up. My heart sank. When I got the the office he said "dont worry, I know you're worried its melanoma.. Its definitely not melanoma. Its not cancer. Nothing to lose sleep over, but it is 'unusual' so we will re-excise to make sure we got it all."  

Here is the exact pathology report:

"Description of findings by examination histopathologically: There are two populations of melanocytes within the dermis, one with scant cytoplasm and the other with abundant pale-staining cytoplasm that houses dusty melanin. Some melanocytes appear large with prominent nucleoli.

Diagnosis: CONGENITAL MELANOCYTIC NEVUS WITH COMBINED FEATURES, UNUSUAL. The nest of melanocytes vary in size and shape within the epidermis and upper dermis. Some melanocytes have pleomorphic and prominent nucleoli. The lesion extends to the peripheral margins and focally to the base of the specimen, This lesion should be excised to ensure its complete removal. However, if this is part of a giant congenital nevus, periodic follow-up is highly recommended. The sections have been reviewed by more pathologists as an interdepartmental consultation."

Help?? I have been researching on the internet and it seems by the terms they used such as "prominent nucleoli" that this mole was severely atypical. They never used mild, moderate or severe atypia to describe the mole, which I thought was the general way to diagnose aytpical moles. What do they mean by unusual..have they not seen this before? why did it require an interdepartmental consultation? could it be something else? Unusual just does not seem very scientific. After leaving the office I wasnt too nervous, but now thinking its severely atypical I have grown a lot more concerned about it. I have now called to try to make that appointment with ped. derm. at NYU and are waiting for their response. We also have a consult appt with a plastic surgeon who will do the second excision.

Does anyone have any insight on this? Is it "definitely not melanoma"? and if it is "completely removed" does that still elevate my son's risk of developing melanoma in his lifetime? I am so sick over the thought of my poor little baby ever having to suffer, especially with this. Thank you for reading, I know this is long. Any opinions greatly appreciated.

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Frannie55's picture
Replies 2
Last reply 11/14/2012 - 2:02pm
Replies by: Swanee, Linny

Just wanted to post the good news. My last occurance 2.5 years ago was 4 mets in my liver which were taken out by RF ablation. Nothing has popped up since. After the first diagnosis of Stage II in 2009 I received the one month high dose interferon. As a result of that I ended up with vitiligo. My immune system seems to be in overdrive, the mets to the liver notwithstanding. I haven't even had a cold. I take Maitake, curcumin, vitamin D, CoQ10, Vitamin C, and a multivitamin. I have not changed my lifestyle. I drink a lot of beer, and smoke, and am obese (although I don't eat very much junk food). I just deal with the lymphodema in my leg because the wrapping and compression garments are more uncomfortable than the swelling. My onc has not offered any trials, and she is a melanoma specialist in Grand Rapids, MI.  She has passed me on to her nurse practicioner. I will continue to get my PET scans every 6 months. Thankfully I have wonderful health insurance that pays for them 100%.

I check in here on the board frequently and am always saddened by the fallen warriors. I pray daily that I could pass on some of my luck to the husbands, wives, fathers, mothers, and children out there who are struggling so hard with this beast. I deal with the beast but I am not dealing well with the "survivors guilt". May each and everyone of you (us) succeed in beating it.

Believe that you can or believe that you can't. Either way, you are right. - H. Ford

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tgro97's picture
Replies 3
Last reply 11/14/2012 - 11:49am
Replies by: Erinmay22, tgro97, POW

Hello all,

 

I am new to this board and hoping to contribute in the future.  At this point I am hoping for some feedback as we are still learning about this disease.

My brother is 37 and a previous occular melanoma patient.  4 years clear after his treatment..  That was 2 years ago.  Last week he was diagnosed with stage 4 liver melanoma.  We are in NYC and he was diagnosed at a city hospital by a very compitant oncologist.  The Oncologist is recommending a high dose (10mg) 6 dose treatment regimem of Yervoy -- IPI.   We are talking to Sloan and unfortunately it is taking a while to get an appointment.  We have heard throught the grapevine that they also recommend this level of dosing.  Without a second opinion, we turned to another Oncologist at a top NY teaching hospital.  This person comes highly recommended and they recommend a totally different course of therapy.  Yervoy at 3mg for 4 doses, take a scan, see the results and then wait an additional 8 to 12 weeks without additional therapy and run a scan again.

 

Stage 4 is very scary.  I don't need to tell that to anyone on this board.  I need help understanding the best course of therapy from the patient perspective.  Has anyone tried this high of a dose?  if so, was it tolerated?  Was 3mg effective at slowing the growth.  If it wasn't, what was the next step.  Any insights would be greatly appreciated.

Tony

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frankMill's picture
Replies 13
Last reply 11/13/2012 - 11:54am

I've been on the forum several times and want to thank everybody that responded.  You helped me to get through the early diagnosis stage and I am truly grateful for your compassion and advice.

 

I was diagosed with Stage IV Melanoma on August 17th.  Since then, It's been a wild ride.  For several months, I've lived in a state of fear. Endless hours on the internet researching and learning, surgeries, SNB, tests, and as of this week, Mage vaccine at Moffitt.  I'm currently NED and hope to stay that way.  I"ve changed my lifestyle, diet, (anti-angiogenic),  breathing, and attitude.

 

I've come to the realization that stress may be the worst contributor to the spread of melanoma.  Stress hormones stop our body's production of Natural Killer (NK) cells.  Many of the foods we eat everyday don't build our immune system or contribute to angiogenisis (your body building blood supplies to tumors).  Steroids that help treatment side effects kill our immune systems.  The very treatments that we receive such as surgery, radiation, blood tests, scans, or drugs all add to stress or supress the immune system.

 

When we live in a state of joy, our bodies produce NK cells.   The Catch-22 is this, when we are diagnosed with Melanoma, how the hell do we not have stress?  How do we get our bodies re-engaged in the battle?   My new goal is the be the best patient that I can be.  There is no single cure or solution to Melanoma.  I will exercise, eat better, oxigenate with breathing, follow my doctor's plan, thank God for everything that has been given to me, and most importantly try to live a life of joy and happiness.  With each passing day, it's getting easier to breath and smile.  I appreciate hugs more than ever.  I have fun with my grandson playing baseball, I take walks and look up at the cloud formations.  I listen to happy music on the radio.  But most of all, I am so happy to have more time on this side of the dirt.  Melanoma has given me the abiity to appreciate every precious moment of life.

 

Take regular breaks from the stress of melanoma and think about what makes you happy. One of my favorite movies is the Shawshank Redemption.  There is a very memorable line by Tim Robbins, "The solution is simple, really.  Get busy living or get busy dying."

 

Live every moment!

Frank

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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sharmon's picture
Replies 5
Last reply 11/13/2012 - 11:17am
Replies by: Snickers60, JerryfromFauq, sharmon, Anonymous, melissa ann

Hello everyone.

The Gsk Mek trial Brent has been on for 33 months seems to letting the melanoma grow.  Very slowly and now he has bone leisions in his ribs near where the largest tumor is in his lung.,  The growth was not enough to removed him from the trial at MD Anderson but we were both concerened because the pain is unbearable without heavy pain medication.l

We live in Tampa and went to see Dr. Weber for an consult about the pain.  Brent was thinking radiation.  Dr. Weber suggested he try Anti pd ! and he has passed all the test and is to start Nov. 11th.  It is the Merck trial and how we got in is a miracle story in itself.

I am needing some support from anyone in the area that can email me with what to expect. 

I read this forum daily and I feel at peace here and understood.,

 

 

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Drew N's picture
Replies 1
Last reply 11/13/2012 - 11:16am
Replies by: MeNDave

A week or so ago I spent the day at MDA getting bloodwork, X-rays and CT scans. All are normal. 3b for 3+ years.

I had a bad lymph node taken out in December 2008, then 20+ more a month later (all of those were negative). 1 month high dose INF, followed by 2K/day of curcumin, care about sun exposure, and lots of BBQ ribs and brisket. Sex, too.

So... I remain grateful for every day I have on the green side of the grass.

My doctors say that the treatments coming are much better than anything thus far. My secretary's MiL is stage 4 and her treatments have worked so far and with far fewer side effects than many of us have had. Hang in there, everyone.

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Tina D's picture
Replies 20
Last reply 11/13/2012 - 11:14am

My husband and I have been thinking a lot lately about choices we will face next month when I get scans again. My first set of scans showed complete resolution off every tumor ( we are continually thanking the Lord for that). I know that Z seems to cause a resistance that tumor cells can develop after time. My question is this. If the next scans are clear, wouldn't it seem to make sense to discontinue the Zelboraf and continue with frequent scans to monitor? If the cells are not constantly bombarded with Zelboraf, it seems they would be less likely to develop resistance to it. I know I am not as smart as the Drs ( not even close) but I also recognize that there are a lot of unknowns yet with zelboraf. I told my husband that the group of patients on this board have to be the most well informed group of cancer patients anywhere, and you have experience from institutions and Drs far and wide. I feel as if you are a tremendous resource of information, ideas and support. Has anyone broached this question with their Dr, or heard any evidence one way or the other? What are your thoughts? I have only been on here since May, but have grown to highly value your input and opinions.

Thank you,

Tina

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mama1960's picture
Replies 2
Last reply 11/13/2012 - 9:56am
Replies by: Tina D, Janner

I had lymph nod dissection, right groin, five weeks ago. Stillhave very little appetite. Anyone else experience this?

It is what it is.

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