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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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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fliberdy's picture
Replies 23
Last reply 11/13/2010 - 1:57pm

I have had mel for 2 months now and I think I finally  know what to say. It usually goes like this "You have melanoma? Oh, my friend, cousin, uncle (insert relationship here) had that and after a long battle and lots of suffering they DIED)!!!!"  SHEESH! Don't they realize that could be me? What in the world? I usually just stand there feeling hurt and dumbfounded. Now, Im not the kind of gal that takes pleasure in hurting another persons feelings but this thing is really bugging me. Has this been happening to any of you? What do you say to these well meaning people? Here is what I think I will say the next time someone begins to regale me with a horror story. I am going to look sincerely into their eyes and with a very kind voice say "Oh, I am so sorry that your friend (whoever) had this awful disease, I sure do hope this story has a HAPPY ending, otherwise I would rather not here it thank you very much".

Trying to stay positive here

fliberdy

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Nancy's picture
Replies 20
Last reply 11/10/2010 - 9:57pm

Buddy, my dear husbacd of 43 years, passed  away today.

He really fought the melanoma battle.  The journey has been a long one, some ups, some downs, but we always thought we would win.

Winning wasn't in the cards this time,  Anyone so desiring can man

 

H

 

 

 

 

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JenC's picture
Replies 1
Last reply 11/9/2010 - 12:45pm
Replies by: Sherron

My husband just finished his 2nd week of IL-2. Just before his first dose he got high dose radiation on two large tumors on his face and neck. The one on his parotid gland is about the size of a golf ball and it started oozing brownish discharge after week 1 of IL-2. He put a bandage on it to cover it up and ever since he removed the bandage it has been dripping blood. I know his platelets are low due to the treatment but I'm concerned about the bleeding. If it is covered it stops, but as soon as the bandage is removed it flows. We will call his doctor in the morning, but has anyone else experienced this?
Week 2 was definitely worse than 1, and he only got 7 doses. However the worst side effect had nothing to do with IL-2. On Wed he was crawling out of his skin and could not relax, a symptom he got the 1 st time. He said it felt like he was xeroxing from heroin (based on tv/ movies). The nurses assured us it was IL2 toxicity. He was ready to quit when someone finally realized that he stopped requesting oxycodone. At home he was up to 8/ day and by Thursday he had only taken 5. He was detoxing! They started to give him oxycodone and he was able to get 2 more doses.
Now for the 4 week wait!

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jenniperry's picture
Replies 8
Last reply 11/9/2010 - 10:50pm

Husband taken off trial and off chemo. It worked to reduce all tumors and remove the small lung tumors and all subcutaneous are gone. Still has 2 in the liver, one 3.1cm and one 1.8cm. Dr. said we will wait until January and re-scan because he is no longer a candidate for any trial nor chemo. He said waiting 3 months was within guidelines and since they haven't grown or shrunk in two months he feels safe doing so. I feel like I'm going nuts.

Cherish every day you have.

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washoegal's picture
Replies 6
Last reply 11/11/2010 - 8:27am

I was just browsing some publications my Onc had done and come across an older one that might be of interest to some of you.  The abstract is scientific but from what I can gather, it says you've got something extra going for you and it should be studied!  A little good news anyway.

http://www.ncbi.nlm.nih.gov/pubmed/18235114

Life is too short to be anything but happy. Falling down is a part of life, getting back up is living.

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