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.

Expand/ Collapse Topic
 
Replies By
View Topic
Becky C.'s picture
Replies 2
Last reply 11/16/2012 - 5:14pm
Replies by: Anonymous, paul

Hi, everyone. I am a stage IV melanoma patient being treated for five small brain mets. I am currently doing radiation for those. Just had a pet scan done which showed three positive lymph nodes, no other mets besides brain. My oncologist is recommending three mponths of temodar.. From reading posts on here, I have seen where some patients have had good response with it, and some not so good. I would appreciate hearing success stories from fellow patients that have been treated with Temodar. Thanks a lot.

Login or register to post replies.

susanr's picture
Replies 2
Last reply 11/16/2012 - 1:04am
Replies by: JerryfromFauq, Anonymous

Thanks for all who responded to my previous post.  You all are great !!!!!!  I am going to talk with my brother this weekend about the PD1 trials.  It will not be easy.  I have not finished his profile yet....Don't have time to eat lately...He is stage IV as of feb. 2012.  dx. 2/2009 stage III 3a. prim. acral left heel.

Mult. surgeries.  SNL, groin dissect.  left pelvic wall mass removed.  Mets to lung, nodes, left. femur, and monster abd. tumor. This is the one thats the big issue.  Failed yervoy...12/2011.  HAd temdor, abraxane, carbo and nexavar....some imporvement with lung mets but not the abdominal monster. 

 

All opinions and advice again appreciated.  Think Pd-1 is the way to go.  Just need some more advice/comments before I go to the judge....my brother.

 

Thank you all !!!!!!!!

Susan

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 0

Genentech recently updated their trial to increase enrollments & more locations including Europe.

Increasing the enrollment & adding more locations could be an indication that this drug (MPDL3280A) is getting a good objective response rate

Study of the Safety and Pharmacokinetics of MPDL3280A Administered Intravenously As a Single Agent to Patients With Locally Advanced or Metastatic Solid Tumors

http://clinicaltrials.gov/ct2/show/NCT01375842

Login or register to post replies.

hope4cure1's picture
Replies 16
Last reply 11/15/2012 - 4:39pm

We got scan results today.  My husband is now 11 months NED.  September, 2010 he had 2 lung mets removed surgically.  February 2011 he had 4 liver mets and 2 lymph nodes in his chest. He started a combo of Carboplatin, Abraxane, Avastin.  Since last September, he has just been on Avastin for maintenance. I hesitate to post this because I know that chemo doesn't have the greatest response, but I do want to give hope to anyone who feels that they are being thrown chemo in desperation. Each case is unique, which may explain the varying responses to treatment.

When I first came to this forum, I scoured the board for whispers of hope from people who were seeing success.  I hung on every NED. I think many of us do that.  Long time survivors here impart hope.The sage advice of so many caring people are gifts of knowledge. The strength, support, compassion and courage that so many of you have shown here touches many deeply.  Each loss hurts, each good report lifts.  How a group of virtual strangers can mean so much baffles me.  You do, and I thank you a million times over.

Hope  

Become what you admire.

Login or register to post replies.

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.

Login or register to post replies.

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.

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

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.

Login or register to post replies.

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.

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

Pages