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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tgro97's picture
Replies 5
Last reply 11/19/2012 - 11:06am

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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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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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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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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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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DeniseK's picture
Replies 6
Last reply 11/19/2012 - 2:57am
Replies by: DeniseK, POW, Phil S

Hello All,
I'm meeting with my onc tomorrow to discuss treatment options. I have to wait a week or two for BRAF testing to come back but they want me to start something right away. I've been trying to do research on what my best options are but its been difficult since my laptop was stolen last week. Anyway I have 9 lung met and 4 sub qs. I know zelboraf souls be best if I'm BRAF positive but what would you suggest until then? What has worked for you? I know everyone is different but any input would be appreciated. Can you also include side effects you had?

Thanks for your help :)

Denise

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

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Tina D's picture
Replies 16
Last reply 12/8/2012 - 7:14pm

I have been thankful for all the helpful posts in response to my question abt possibly going off the Zelboraf in December if scans are still clear. We are thinking we'd like to seek expert opinion and are considering traveling to one of the bigger hospitals to seek opinion. I have heard MD Anderson mentioned favorably many times. We live in SW Indiana, but are completely willing to travel this time to wherever is best. My Oncologist ( though he is absolutely brilliant) has limited experience with Z and before making this big of a decision we'd like to talk with someone who has more experience in this area.

What are your experiences or opinions?

I will not always be this high-maintenance wink  . Just that these decisions are so big to us right now.

Thank you!!

Tina

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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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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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Replies by: dellriol

Hey everyone,

My husband was just very recently diagnosed with Stage IV Melanoma. Any information at all will be helpful. He is a fighter, thank God! But both of us are terrified beyond words. The doctors are very knowledgeable but we would love to hear from the actual day by day fighters that are on here.

Love and Hope and FIGHT to everyone here!!

I will have to look at all of the papers again. I'm not sure of all of the terminology yet. What I know as of now is that they are sending a biopsy sample out to be tested if the Mastastasic (spelling?) Melanoma is a mutation since he's only 42. If it is, they want to put him on a pill treatment called Zelboraf to shrink the spots he has. In addition to that, they want to use immunotherapy. They want  to use as little radiation as possible and they don't want to use chemo at all. Has anyone been on/currently on Zelboraf? Is it effective? The docs told us that it's effective almost immediately but it usually stops working in about 6 months. Any suggestions?

+_***************************************************************************************************

My latest response to them:(Jerry)

Basically any cancer is either/or both an oncoprotein overexpression and a DNA mutation.  There are four types of treatment offered.  Surgery, Chemotherapy, Immunology, & radiation.  Generally radiation and normal chemotherapy are of limited value against Melanoma.  The Immunologies (which attempt to jump start ones immune system to attack the cancer cells), approved to date are Interferon (Debated as to value), IL-2 and the Ippi (Yervoy), just approved. (both toxic with about a 20% chance of slowing melanoma down).

  The newest in the chemo line of attack on melanoma is called Targeted Therapy (Chemo targeted at specific onco-overexpressions, DNA mutations and signaling paths)  These are still chemo and are the most valid chemo to date against melanoma.  Zelboraf is the first Targeted chemo to be FDA approved against Melanoma that has the BRAF onco-protein and DNA Mutation. Melanoma has numerous protiens and DNa mutations posssible.  If one does not have the BRAF, then Zelboraf is useless.  If  one has the BRAF, then Zelboraf may be the fastest treatment to get a response.  Zelboraf only attacks one of the melanoma signaling paths/mutations and no one knows how long any one individual will respond.  Will the melanoma find a way around this blockade?  In many cases it will, but not in all cases. 

  If one of the immunologies will work they are usually lookoed at as the first line of attack if one'stumor l oad is not too heavy.  Yervoy may take a long time to show if it is having an effect and often something like Zelboraf can be used to reduce a heavy tumor load and to buy time for the Yervoy to be given as a followup to allow time for it to start working.  (We are wanting to see the results of trials that develop a timing and co-dependence relationship betrween using these together in treatment planning.)

Is y'alls Oncologist a melanoma specialist?  Even the specialist have problems keeping up on all that is now happeniing in the melanoma research.  A general Oncologist cannot keep up on it all.

Yeah, the terminology is not fun to learn.  (I never wantee to learn any!  I didn't even know what an oncologists was until over 6 months after I was diagnosed with melanoma!)

Keep up the learning.  As you noticed, many of  us were told years ago that we would be dead within months.  We learned and fought and some of us are still bugging the Oncologist's.  (Wish they knew why!)

 

I'm me, not a statistic. Praying to not be one for years yet.

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JerryfromFauq's picture
Replies 3
Last reply 11/12/2012 - 3:26pm
Replies by: JerryfromFauq, Anonymous

http://www.huffingtonpost.com/andrew-weil-md/turmeric-health-have-a-happ...

Excerpt from the article.

The National Institutes of Health lists 24 current studies on the effects of turmeric and its chief active component, curcumin.

Here's a quick roundup of recent research on both turmeric and curcumin.

  • Curcumin seems to delay liver damage that can eventually lead to cirrhosis, according to preliminary experimental research at the Medical University Graz in Austria.
  • Kansas State University research found that adding certain spices, including turmeric, can reduce the levels of heterocyclic amines -- carcinogenic compounds that are formed when meats are barbecued, boiled or fried -- by up to 40 percent.
  • Rodent studies at the University of Texas indicate that curcumin inhibits the growth of a skin cancer, melanoma and also slows the spread of breast cancer into the lungs.
  • Researchers from the University of South Dakota have found that pretreatment with curcumin makes cancer cells more vulnerable to chemo and radiotherapy.
  • Epidemiologists have hypothesized that the turmeric that is part of daily curries eaten in India may help explain the low rate of Alzheimer's disease in that country. Among people aged 70 to 79, the rate is less than one-quarter that of the United States.

And at least one new study suggests curcumin's value for arthritis treatment. Since arthritis is so common and the results so interesting, it's worth a closer look.

This research, from Italy, was a three-month trial involving 50 patients diagnosed by x-ray with osteoarthritis of the knee.

28.html

I'm me, not a statistic. Praying to not be one for years yet.

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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 4
Last reply 11/12/2012 - 4:10pm
Replies by: Roxy1453, kylez, NYKaren

Hi all,

I haven't posted much lately but I have a question. I had two rounds of IPPI and developed colitis so I couldn't have the other two doses. Now, 11 months later, I have developed a skin rash. It doesn't really itch though. I called the Dr and he said yes it probably is from the IPPI. Told me to put a steroid cream on it. I didn't think to ask if it will go away and how long that will take. Has anyone else had this and what did you do? It's on my face and looks terrible. I go in next Tues. for a PET Scan so will talk to him more then.

Thanks,

Nancy

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

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islandbreeze's picture
Replies 7
Last reply 11/18/2012 - 10:27pm

Hello I wanted to thank all that replied and brought relief to this distressed mother...I am in Nassau Bahamas and Ive been referred to a surgeon/onc next friday 16th nov. He will most likely want to biopsy my armpits and groin. I am just concerned with side effects or lasting effects from these incisions. I am anxious and can feel panic within me and although Im on anti anxiety & anti depressants my mind and nerves are beginning to freak me out.so im talking it out with you all and hope to get some experienced patients stories replies.

Ive no one with me but I am staying at a cancer care center where other patients are in treatment...watching them I admire thier courage,right now I dont feel strong and I dont know if I can rise up and fight being depressed and scared. I want to live for my children..and I miss them so much my mom is taking care of them while im here.

Besides MM Ihave other physical problems that need to be addressed..and really want a cat scan so they can see whats all going on and get treatment for it..

Im exhausted and fatigued all the time and it takes so much effort to move about.When evening comes I have had enough of the day even if I havent done much..just walking from my room to the tv area where i get online takes it toll.

Anyway, 

I pray for strength for the patients on this site as well as my own.

Time is a versatile performer. It flies, marches on, heals all wounds, runs out, longer then rope and will tell.

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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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