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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Wendi Lynn's picture
Replies 10
Last reply 11/15/2010 - 6:23pm
Replies by: Anonymous, LBN, Napa K, Wendi Lynn, Jan in OC, Kim K, Fen

Hi All!

I have a coworker that is currently being treated for breast cancer at UCLA and she was kind enough to ask about melanoma specialists there for me.  The doctors she was referred to are Dr. Glaspy, Dr. Ribas and Dr. Chmielowski.  Has anyone worked with any of these doctors?  I'm currently Stage III NED (waiting on brain MRI results) and my current oncologist was checking into local trials for me before we decided anything.   Just wondering if anyone has experience with these doctors....

Thanks in advance!

Wendi

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Anonymous's picture
Anonymous
Replies 9
Last reply 1/30/2011 - 5:40pm

Hi,

I'am 31 years old, living in France. Last september I was diagnosed a melanoma on my back, 4,01 mm, not ulcerated, 2 mitosis. So from one day to another, I started learning a lexicography I have never heard before.

My PET Scan was clear, as well as the ecography. Then I had a surgery for the Sentinal node biopsy. And it came negative, so it's clear as well.

The dermatologist told me last week that I am in Stage II B (just for 0,1 mm I guess, otherwise it would be stage II A). And she suggest me to take Interferon three times a week for 18 months. Another dermatologist I called, told me that the use of interferon is controversial, and that I should think it well because of the side-effects.

I know that is a personal decision and that is quite difficult to generalize the side effects. As an amateur in melanoma, I will appreciate if you guys, can help me to make myself clear. Thanks,

Gabriel

 

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ShariC's picture
Replies 10
Last reply 10/27/2011 - 8:57am

Hi All - I just wanted to check in with the board and say that I've finished my first round of bio-chem.  Brutal!  In fact, I'm pretty scared to go back.  I'm scheduled for 4 rounds with surgery to remove a small tumor in between rounds 2 and 3.  I so much appreciate reading this board, but it also scares me so much.  Losing people at 20, brain mets, etc...I just can't believe this road ahead.  Thanks for all the support, advice and kindness.  - Shari IIIb/c in Nebraska

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Jim in Denver's picture
Replies 13
Last reply 11/12/2010 - 10:26pm

BMY is changing the name in anticpation of FDA approval.  There will be a meeting on Dec 2.  Here is an excerpt about the meeting  and a link to the FDA site for more information:

Public Participation Information

Interested persons may present data, information, or views, orally or in writing, on issues pending before the committee.

  • Written submissions may be made to the contact person on or before November 16, 2010.

http://www.fda.gov/AdvisoryCommittees/Calendar/ucm230348.htm

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kellie1979's picture
Replies 7
Last reply 11/11/2010 - 11:00pm

I went to a dermatologist for a spot on my leg that was hurting....luckily it was only a cyst.  However, she noticed that one of my moles was concerning so she removed it and took a quick look at my back and removed two more.  I am only 31 and never even thought that I needed to worry about my moles yet.  They came back abnormal, I went in for what I thought was a full body check.  The PA did NOT check my whole body (I wish I had known at that time what a full body check was supposed to be) she removed 5 more, 3 from my back, one from my stomach and another one from my leg.  Four of those came back abnormal, the other one the doctor sent back to confirm that to him it appears to be Melanoma.  I have since met with a cancer genetists who thinks I need to be tested for Dysplastic Nevi Syndrome due to my family history of cancer and the amount of moles that I have.

Well anyways, it has been over three weeks since I found out that it may be Melanoma.  Does it always take this long to find out?  I am trying not to worry too much but I seriously have not been sleeping well at all and am about at my breaking point.  Many people in my life do not understand why I am concerned as most of them do not understand there is a difference between Melanoma and the other types of skin cancer that are not as threatening.

I already know that once my pathology comes back (hopefully tomorrow) I am going to go to a different dermatologist as I keep finding moles that look similar to the ones that were removed.  And I don't know if I am just paranoid now but I swear everytime I look in the mirror I find a new mole that I didn't know I had.  I am also worried about my daughter, she is 7 and has had several moles appear lately.  Is this normal or should I be worried about what this means for her?

I am sorry for the rambling, I just don't know what to expect and am not finding much support in my personal life.

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Vermont_Donna's picture
Replies 8
Last reply 11/12/2010 - 1:33am

Hi everyone,

After a teary week and looking at all my options and feeling so exhausted and with the unhealed leg wound, and now starting IPI next week, I have decided to resign from my job as a school based clinician. I see 30 kids a week in three kids and it was just too much. I am not taking care of myself nd now my melanoma is back, two months after I completed radiation. Because I havent been working a year (only went back 6 months ago) I am not eligible for FMLA. I will however just resign and will get short term disability from work and then long term disability and I will get my SSDI back too. I will pay to COBRA my health insurance for me and my two kids in college.

Ok questions...... #1.what are peoples main side effects to the IPI? I am getting four infusions to start, three weeks apart. Is this what others have done?

Question 2, My tumor was analyzed and I am BRAF negative. What does this mean for me (or not mean)?? Does it rule out certain treatments or trials??

Thanks so much everyone,

 Vermont _Donna, stage 3a, post SNB, WLE, 11 months of low dose interferon, 7 months of Leukine, ILP at Mass General in Boston, two rounds or radiation, and numerous surgeries and hospitalizations for cellulitis infections, and now left with fairly severe right leg and foot neuropathy. Oh and on lots of drugs.

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Brandi's picture
Replies 2
Last reply 11/10/2010 - 5:29pm
Replies by: Brandi, glewis923

I don't know if anyone on here is a steeler fan but here in Pa. I think everyone is. Anyway the reason I bring this up is because coach Bill Cowher's wife died of skin cancer about a year ago (I think). They did not release what kind of skin ca but I saw all the posts about mel not getting the attention it deserves and I thought of this story. Bill will actually be on the news tonight talking about living without Kaye. I too believe this deadly form of cancer needs more attention. I was actually thinking of ways to bring it into the public spotlight. We need people to understand what this is and how bad it can be if left to run rampid. I just thought I would let everyone know of another famous person who died from skin ca. Maybe just maybe it will be brought more into the main stream spotlight. It's a sad way for mel to get attention though. I don't wish it on anyone.

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emilypen's picture
Replies 3
Last reply 11/10/2010 - 9:50pm
Replies by: emilypen, Anonymous, lhaley

Hi All,

Just wanted to let you all know the good news! After 7 weeks on the trial drugs ( Mek & P13k) my husbands  scan results show "stable" disease. The measurements show that the tumours and bone lesions have experienced absolutely no growth!

We were hoping for a reduction in size but as he feels so great and and its only been 7 weeks we're happy. Hopefully in the next scans in 2 months will show a reduction.

Would love to hear how others on the Mek inhibitor have faired with their scans? was reduction immeadiate or did it take time?

 

thanks,

 

Emily

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ErikaHouston2's picture
Replies 6
Last reply 12/2/2010 - 2:05am

Does anyone have any experience with Remicade & Melanoma? I am recently diagnosed with Crohn's and GI doc wants to start me on Remicade and is not concerned about the melanoma, The MD Anderson Dr. or melanoma did not say flat out "no" but they were not excited about it and thought I should attempt other treatments first. Remicade is a TNF blocker and scares me, not sure worth the risk.

My melanoma was stage I.

Thanks for any input you may have.

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EricNJill's picture
Replies 18
Last reply 11/13/2010 - 9:58am

Tuesday, Nov 2nd we found out that Eric had a 3 CM tumor in the brain.  It was new since his last brain scan on September 8th.  We were looking into Neurosurgeons when Friday Eric wasn't making any sense and wasn't finishing sentences.  I called Kirkwood's nurse and she told me to take him to the ER.  In the ER they determined that he should be careflighted from Dayton, OH to Pittsburgh, PA for emergency surgery.  Saturday, Eric had a emergency craniotomy by Dr. Mintz in Pittsburgh.  He is now home and doing well.

They said that he should have Gamma Knife Radiation to the tumor bed so we are seeing someone about that next Monday.  I don't think Eric is going to be able to work anymore.  He definitely can't drive due to loss of his peripheral vision.  He sometimes gets confused about things.  He was trying to turn up the radio in the car and was turning the 4x4 knob while I was driving down the highway.  He also asked me when I put all the buttons on my steering wheel (they've always been there).  I'm hoping that maybe this is normal 3 days after surgery and that as time goes on he will get better.

After Gamma Knife they said he should start Temodar.  This is all very new to me.  Eric's cancer has always been confined to his leg.  I'm so scared.  As many of you already know, it's so hard to watch someone you love go through so much. 

If anyone has any advice on anything, I could use it.  If we file for Social Security, he has a 5 month waiting period correct?  and after that 5 months you do not get back pay for it, right?

Thanks for any help.  JillNEric in OH

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BarbieGirl's picture
Replies 8
Last reply 11/16/2010 - 4:29pm

Six years ago today, our friend, Lesley, joined the angels in Heaven.   I only got to see Lesley twice---once at a MPIP 'bash' in Asheville, NC, and once at her home in Mexico..... Mexico, New York, that is.  We had a great time in Asheville... The party in my room went on until early-thirty!  Guitars, singing, chatting... I'm surprised the hotel didn't kick us out, 'cause we made a little bit o' noise! =)

"Love and Light" Carole and I went to visit her just a few days before she died.  It was heartbreaking---just a few months before in Asheville, Lesley was so vibrant, didn't look sick at all, sang all night with us, kept us laughing, and we became really close---and now, her new journey was to start soon.  When we got there, she lit up--she recognized us and welcomed us to her home.  She was sitting in her recliner and we had a great visit.  Within just a short time, though, literally within an hour or two, Lesley was hallucinating---possibly from the meds; possibly from the brain tumor(s), or both,----and seeing little green men with tiny, neon beady eyes, and fire around her bed (on it, under it).  Carol and I would go over and 'put out the fire" and tell the lil men to go away.  Sometimes we'd tell her there wasn't anything there, and she'd say.."I know.  I'm hallucinating." 

She was terrified and just wanted out of the house.  Her sweet hubby, David, gently helped her to the car, and the 4 of us drove around for a bit, seeing the big town (hah!) of Mexico, including the "bus barn" where Lesley had worked. (She had been a school bus driver.)    She was still seeing the little green men, now riding their bicycles backwards, coming for her.  I was sitting in the back seat, snuggling with Lesley, and I started singing.. asking her to sing with me.  We started with the song I wrote, "Wings of Hope", and she sang the words she could remember.   I think "Amazing Grace" was the next song, and by then she had calmed a bit, and sang with everything she had in her. Then we sang "Jesus Loves Me", and she sang her heart out!!    Through this horrible nightmare, Jesus held her in His hands, and gave her peace--enough to return home and not be afraid.  .  David can correct me if I'm wrong, but Lesley hadn't hallucinated before, and she didn't again after that one night.  I can't tell you what it meant in my heart to be there with Lesley through her worst time, and to be able to sing about Jesus with her!   A coincidence that Carole and I were there? Not a chance. 

Lesley, I love and miss you, and am blessed to have known you.  I shall meet up with you again someday!

Big *Hugs* to David and the girls today,

~Lisa~

 

David and Lesley:

 

In Asheville:

Glenda, Dian and Lesley: 

Note:  Dian was doing interferon during the bash---can't believe she even made the party---From Spokane, WA to Asheville, NC!

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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DCMF's picture
Replies 4
Last reply 11/10/2010 - 9:25am
Replies by: DCMF, Anonymous, Becky, 2atlascedars

We are an Ontario charity who are looking for young people who are suffering from, or who have been affected by, melanoma to appear in an educational video.  The David Cornfield Melanoma Fund was established in 2007 and is devoted to saving lives from melanoma by promoting awareness of this disease.  The Fund was created in loving memory of David Cornfield, who passed away from melanoma in December 2005 at the age of 32.  David was my step-brother and left behind a legacy, including a young son. 

We are in the process of making an educational video aimed at teaching youth and their caregivers about preventing and detecting melanoma. We plan to distribute the video to summer camps, schools and other stakeholders.  We have hired a dynamic well-known production company, Evidently, to help us shoot this video.  We are moving things forward very quickly are looking for actual patients (preferably younger people, such as teenagers or young adults) or family members to appear in our video.

 The video will be shot in Toronto hopefully around the end of this month. We are not in a position to pay for the appearance but would, of course, cover reasonable expenses i.e. parking.
 
If you or someone you know are able to assist, that would be wonderful.    Kindly contact me on this Board post or by email at david.cornfield.melanoma.fund@gmail.com and I can give you some more information.
 
Thank you
Elyse
  

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We are an Ontario charity who are looking for young people who are suffering from, or who have been affected by, melanoma to appear in an educational video.  The David Cornfield Melanoma Fund was established in 2007 and is devoted to saving lives from melanoma by promoting awareness of this disease.  The Fund was created in loving memory of David Cornfield, who passed away from melanoma in December 2005 at the age of 32.  David was my step-brother and left behind a legacy, including a young son. 

We are in the process of making an educational video aimed at teaching youth and their caregivers about preventing and detecting melanoma. We plan to distribute the video to summer camps, schools and other stakeholders.  We have hired a dynamic well-known production company, Evidently, to help us shoot this video.  We are moving things forward very quickly are looking for actual patients (preferably younger people, such as teenagers or young adults) or family members to appear in our video.

 The video will be shot in Toronto hopefully around the end of this month. We are not in a position to pay for the appearance but would, of course, cover reasonable expenses i.e. parking.
 
If you or someone you know are able to assist, that would be wonderful.    Kindly contact me on this Board post or by email at david.cornfield.melanoma.fund@gmail.com and I can give you some more information.
 
Thank you
Elyse
  

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Lauren mom to Jenna's picture
Replies 42
Last reply 11/18/2010 - 12:22am

I am very sad to tell you that Jenna passed away over the weekend at the age of 20. 

She responded beautifully to the BRAF/MEK combo.  We could watch the sub-qs shrink and disappear.  The internal mets were reduced to about half the size by her first CT scan.  She was feeling so much better, but starting to get some headaches.  An MRI was suspicious for leptomeningeal mets, but not conclusive, and an LP came back without any melanoma cells, so we were able to continue on with the trial and double her dose in hopes that we could get enough of the drug into her CNS to control whatever was going on.  With the addition of some new meds to help decrease the intra cranial pressure, it was under control for the most part until last Tues. A new MRI showed both lepto mets and multiple small brain mets.  A multiple location, simultaneous hemorrhage of these small mets took her out of the cancer.  Our neurosurgeon said he had never seen an event like that before.  We can only attribute it to the mercy of God as He continued to have his hand on Jenna through this entire 6 1/2 year process. We experienced a lot of joy, and made the most out of every experience.  I am incredibly blessed to have been able to see her through, and learn from her amazing attitude.  She would joke that she felt like the knight in Monte Python's Holy Grail movie that keeps getting appendages chopped off yet continues to yell at his opponent "come back and fight, this is just a mere flesh wound".  Well, melanoma may have continued to reduce her life, bit by bit, but she did not let it take her spirit, and she lived her life with grace and enthusiasm until the very end.

I know that there has been a lot of discussion on the board about the BRAF and inhibitor drugs and whether or these drugs cause the disease to go to your brain, creating some fear in doing these trials.  It is my understanding that if you get the opportunity to fight melanoma long enough it will probably find it's way to your brain.  In Jenna's case, she had such extensive disease before we could get her an opening in the trial, that it had too much of an opportunity to get there.  These drugs are amazing, they can give you your life back quickly.   Without question, the best available treatment, and we should collectively be fighting to get more trials open and cut through the red tape.  It is hard enough fighting cancer, but fighting "the system" to get a drug that you know can extend your life (living) is just too cruel.

 Thanks to all who post links to research and share their stories and support here.  Your dedication to the board and one another carried us farther down the path than we thought we could ever go.

Fight On!!

 

Lauren mom to Jenna

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Nebr78's picture
Replies 1
Last reply 11/9/2010 - 4:09am
Replies by: Dynasysman

Have you noted that FDA has delayed the approval of Ipilimumab by 3 months.  I suppose they all want to go on vacation with our president, while some of us stay home and suffer.   Since I can't get into a clinical trial, I was waiting for Ipili to be approved for my Dr. to use possibly. I am the one with heart disease also.

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