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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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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Anonymous's picture
Anonymous
Replies 4
Last reply 11/9/2010 - 10:27pm

Hello,

I am a very physically fit 45 y/o male, but I was just diagnosed last week with an Acral Lentiginous Melanoma. In the biopsy it was found to have a 3.7mm Breslow's Depth (Clark's Level IV), but it was not ulcerated and had a Mitotic Index of < 1 per mm2. In my first post-diagnosis exam there were no other lesions and no enlargement of the lymph nodes found.

Next week I will have a sentinel node biopsy performed, along with a wide area excision of the melanoma. The surgeon said they will not bother with the lymph nodes in the knee area, but will focus solely on those in the inguinal region. Also, the surgeon mentioned a plan to take a 2 cm margin out with a skin graft from my thigh to close the defect.

I was wondering if anyone had any advice for me at this point in the process. This feels like a bad dream…no a nightmare.

Thanks,
Mark

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Charlie S's picture
Replies 116
Last reply 3/26/2013 - 12:20pm

Been a lot of dying going on around here due to melanoma  of late, but there is also a lot of living going on as well.

For those of you that don't know me, please do not think I am being cavalier about people dying from melanoma.  My girlfriend died in my arms as a result of melanoma(who I met from here by the way).  I have been Stage IV melanoma since 1996 and was Stage III 9 years before that and am now in my 8th recurrence as I am in the middle of my 23rd year since diagnosis with an unknown primary.

  Many people from here, both dead and alive I have met physically over 10 years  of posting here when it was MPIP and more than once I wish it was me that died and not them.  They fought hard, did the stinking surgeries, did the stinking treatments, did the stinking clinical trials and suffered and fought with silent screams as they awaited scan results and fought hard with many by their side

.  Even today, those caregivers and families continue the fight against melanoma in the honor of those they lost on the cancer battlefield with events, fundraisers, quilts, campaigns and are standing on the doorsteps of government to build on their legacy.

Every one of them bitch slapped melanoma, drug it down the glistening hallways of clinics, radioology departments,  hospitals, and with broken bottlles jabbing at melanoma with real anger and rage in an effort to defeat it drug it to the gutter and gave it their all.

So, to those we have lost and their families and caregivers, I salute you.

However, to paraphrase my supercalifragilisticexpealidocious super melanoma buddy Amy Busby,,,,,,,,,,,,,,,,,not today.

So I would ask that all of you Stage Fouries chime in, declare yourself undead irrespective of the odds and say "not today"

Sick, lame and lazy, speak up Stage IV people.  One of our only many jobs is to show others that in spite of the odds and statistics, people DO live and survive melanoma.

Call me undead.  Speak up please Stage IV people!

 

Charlie S

 

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NicOz's picture
Replies 8
Last reply 11/9/2010 - 2:29pm

Not around often these days- I've found it's better for my health if I remain only a rare visitor :P

Just a heads up for those interested. Had scan yesterday, am getting organised today, flying back tomorrow and having another craniotomy Thursday (Oz time). Feeling very happy and relaxed about it all. Looks like it will be a re-excision of a previous right frontal tumour, so hopefully same bone flap will be used and I can keep my separate sites limited to 6 (ROFL!)

Biggest concern is that they don't make my eyebrows uneven. They fixed them last time, so let's cross fingers that they keep them where they are :)

Yes, that will make 7 separate surgeries for craniotomy, and a total of 9 times opened up. The timing is fantastic, as I will be well healed and free(ish) of headaches for Georgia's first dance concert and school presentation concert in a few weeks.

They are concerned that they are finding it difficult to find stable areas to screw in the frame (it's the soccer ball effect of my head). I've suggested that I am doing them a favour by keeping them on their toes and helping them develop their problem-solving skills. I think that's important in the medical profession, don't you? That will leave me with 4? in there, but they aren't causing symptoms so I'm not bothered. We're pretty limited to one at a time thanks to my unstable skull, so it's all about prioritising.

Meanwhile, getting my things together and logistics organised... and feeling rather smug that I'm still ahead of JAG in the craniotomy stakes :P

See you on the flip side!

Nic xxx

Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another

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greendragonfly101's picture
Replies 29
Last reply 11/13/2010 - 10:26am

need for suggestens for recovery from surgery

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need for suggestens for recovery from surgery

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djpayn's picture
Replies 1
Last reply 11/8/2010 - 9:29pm
Replies by: Jim M.

Hi!! I am in desperate need of a wheelchair for a few weeks to months and was hoping that someone in the tampa / moffitt hopital area has an old one they would let me have for a while.  if not, does anyone know where i can get one donated or for cheap?

this is not for me, but a family member who is unable to walk right now due to an accident.

 

thank you for your help with this.

 

Djpayn (dawna)

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kateboston's picture
Replies 25
Last reply 3/29/2013 - 9:41am

I am 30 years old and was diagnosed with melanoma in June 2010. Over the summer, I had a WLE and SNB. One of the lymph nodes had microscopic melanoma in it. I then had a lymph node dissection of my left groin in August. Luckily, those lymph nodes were clean. I am stage 3a. In September and October, I went through the induction phase of Interferon and now am in the maintainence phase. I am lucky to not have many side effects and am working full time.

This forum is great for all us melanoma survivors to connect but lately I feel I'm seeing a lot of people who have succombed to this awful disease. Right now I'm at the point where I could use a little inspiration - I want to hear stories of people who are kicking this disease's ass! I know that there is a chance this could come back but I need to hear from those of you who's has not come back . I need to know that that is a possibility for me....for us.

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Rocklove's picture
Replies 14
Last reply 11/10/2010 - 7:07pm

 

I did the 6 rounds of Bio-Chemo things were shrinking well, then went on the maintenance part, did 2 rounds of maintenance then scans showed developed new tumors in the liver. There are multiple new lesions laterally in the liver in segment 8 there are new lesions in segment 5 and 6 as well. Existing tumors were stable or shrinking a little.

Dr. Weber advised I go on the PD-1 Antibody Combo Trial. There will not be any openings until 4 weeks pass, so I am getting worried about waiting so long before I can jump into treatment.

My HLA Type is HLA2 Positive so Dr. Weber said I have good options. Asked if I could go on IPI first so I could get started on something quicker, he said I would not qualify on the PD-1 trial if IPI was first, but could do IPI  if the PD-1 trial did not work.

Moffit sent slides and bloodwork to see what I am compatible with as far as BRAF & Mek inhibitor trials I won't get results for about 3 weeks.

A friend found the MRI Guided Laser Ablation trial and I sent the contact a msg to see if I would qualify http://www.mayoclinic.org/news2010-jax/6006.html

Looking for any comments or advice that I should consider while I wait.

Thanks,

Rocky (Stage IV Liver Mets)

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