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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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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Wife of nj_Mark's picture
Replies 16
Last reply 11/7/2010 - 9:59pm

Four years ago we got the call from the doctor that Mark had Melanoma.  I didn't even know what it was - I sure didn't realize the nastiness of it.  After multiple surgeries and drugs we are now at the place we have been dreading for these past years.

I'm losing the best husband and the kids are losing the best Dad.  He will be missed, yet he lives on in the many people whose lives he's touched.

The end is very near.  He wanted me to post and say how much MPIP meant to him and how he appreciated the support he received here.

I'll love him forever.

Terri, wife of Mark

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MaryMary73's picture
Replies 7
Last reply 12/10/2013 - 12:05am
Replies by: WendyD., Anonymous, MichaelFL, MaryMary73, washoegal

I am a 37 year old married woman, no kids yet but we're trying! Never spent much time in the sun other than swimming during the summer months as a kid at the neighbourhood pool. Don't go to tanning salons. I have dark hair and hazel eyes and I am fair skinned. I smoke and I am a bit overweight. I have always understood the risks of smoking and being overweight....lung cancer....heart disease....diabetes. Anyhow, I was visiting my mother about 3 weeks ago and I happened to ask her for a silly favour....I asked her to scratch my back. That is when she made a comment that sent me into a tailspin. "I have never seen THAT before". Hmmmm...I looked in the mirror and noticed a dark spot right in the middle of my back. Being a bit of a hypochondriac (if you can believe it!), I made my husband take a picture so I can see what it looked like. It was kind of oval...and the colour ranged from dark brown to light brow. I immediately began looking for pictures of melanoma on the Internet. Mine looked almost identical to what I was seeing on the Net. It was about 6mm in diameter. So I went to my family doctor 2 days later and asked him to take a look. He said "oh it doesn't look like anything dangerous but if it will make you sleep better, I will refer you to a dermatologist". I saw the dermatologist 5 days after that. He took one look at it and said "that looks like melanoma". I began to shake and cry. The dermatologist was a bit taken aback by my reaction. He told me to calm down and he will do a biopsy and get back to me with the results. Exactly 7 days later, I got a call from his secretary. She told me he wanted to see me that same day. I almost fainted from fear. Within 30 minutes, I was in his office. He confirmed that it is melanoma in situ and that the depth of invasion was 0.39mm on the Breslow scale/chart. He told me that whoever noticed that mole saved my life. He said the surgery is curative. I had more skin removed 2 days after that and now I am at home, recovering. It was a minor procedure done by a plastic surgeon who also confirmed it was a curative procedure. I will be seeing the dermatologist again in 6 months for a checkup. But believe me, I will be doing my own routine skin checks from now on and my husband will keep a very close eye on my back and the back of my legs.

I honestly NEVER EVER EVER, in a billion years, thought that skin cancer was something I would ever have to worry about. Ever. But now I know better. That weird-looking mole was on my back for at least 3 years according to my husband. He said he never mentionned it to me because it always looked the same...never changed colour or size or shape.

I am lucky. It was a very slow growing tumour. Had it been anything else, I would not be here sharing my story. I would LOVE to educate others on skin cancer, especially melanoma. It could happen to anyone and at any time. I am living proof of that.

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scots's picture
Replies 3
Last reply 11/7/2010 - 8:09am
Replies by: scots, debbieVA, BethA in VA

I live 2 hrs from University of Virginia Medical Center so I'm going to a local oncologists for treatment but I would like to find a melanoma specialist at UVA Cancer Center.  Doe anyone see a Melanoma specialist at UVA?

 

Thanks,

Scot

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Janis B.'s picture
Replies 8
Last reply 11/5/2010 - 8:27pm

Hello all,

For over a year I've read this board and have learned so much, especially about hope and courage.  Now it's time for me to jump in, so I hope someone is out there listening.  My brief history - I was dx'd in 08 at Level IB, had WLE and SNB - no mets.  Recurrance 1 yr. later - three tumors in same area.  Isolated Limb perfusion tried and failed, followed by 2nd WLE and SNB.  Micromets to one lymph node.  Node dissection w/ no further cancer found.  Began interferon late 09, completed induction phase, unbalbe to contue maintenance phase because I got too ill.  Soooo - I'm now IIIC, NED since 2/10.

My question - my dr. at MDA seems to be saying that, with no active tumors, I'll be eligible for clinical trials if/when I progress to Stage IV.  Is melanoma a wait and see game? (sorry to use that word - this is so serious for all of us).  I'm BRAF pos.  Are the new BRAF trials just for those with active disease??  Is there nothing that will stay the beast?  Of course, I'm very very grateful to be free of the disease for these past months, but is there anything for Stage IIIC and holding?

I will be so grateful for any answers.

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Tim--MRF's picture
Replies 14
Last reply 11/14/2010 - 2:21pm
Replies by: Jan in OC, Anonymous, Suzan AB, glewis923, sharmon, King

This drug has had a lot of press over the past several months, based on strong results from a small, early trial.  Today the data for larger trial were released, and here are the key points: 

--this drug is used only for melanoma patients who have mutated BRAF, about half of all melanoma patients

--about 53% of people who receive this drug have a response to the drug (vs. 14% for IL-2, for example)

--average duration of response is between 6 and 7 months

I learned today that the company is moving forward with an expanded access, or compassionate use program.  And here is the news:  they anticipate having this program open by the end of 2011.

This is much faster than I thought would happen, and is good news for people interested in having access to this drug.

I will know more as this develops, and will try to keep everyone updated.

 

Tim--MRF

 

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aspenglow6@yahoo.com's picture
Replies 8
Last reply 11/6/2010 - 7:25pm

New subscriber looking for anyone who can relate to vulvar melanoma or who has had experience using aldara cream??

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Hello All,

I've attended the past few symposiums presented by the MFNE and found them excellent resources. 

Jerry from Cape Cod.

An Evening with the Experts

A presentation of the latest in melanoma treatment and research

An opportunity for education, discussion & connection for patients,
survivors, families & friends

Tuesday, November 16, 6:30 – 9:00 pm

Dana Farber Cancer Institute
Jimmy Fund Auditorium
35 Binney Street, Boston, MA

Speakers:
F. Stephen Hodi, MD, Clinical Director, Melanoma Program, Dana Farber Cancer Institute
Donald P. Lawrence, MD, Clinical Director, Center for Melanoma, Mass General Hospital
Anand Mohadevan, MD, Radiation Oncology, Beth Israel Deaconess Medical Center
 

    Dana Farber Cancer Institute
    Jimmy Fund Auditorium
    35 Binney Street, Boston, MA

RSVP:
Melanoma Foundation of New England at (978) 371-5613 or tsignet@mfne.org

Services:
Free Admission, Refreshments, Free Parking (in the Smith Building at 1 Jimmy Fund Way)

It's about kickin' Melanoma's butt! "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." in memory of NicOz

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simone's picture
Replies 8
Last reply 11/9/2010 - 9:31pm

So sad to be joining this club...

I have been reading the posts for weeks now, but just finally joining.  So, here's the story.  I am a 37 yr old happily-married mom of 2 toddlers.   The Melanoma bomb hit our lives almost 2 months ago.  I was diagnosed in August w/ Melanoma Stage 1C (1.2mm with mitosis) on my arm and had the WLE a month ago w/ Sentinal Node Biopsy in New York.  Lymph nodes were not involved... thank God.  Then, my Melanoma team  tells me that I should be "focused on survival" for the next 2-3 yrs & need to be monitored for 6-10 yrs due to the mitosis.  WHAAAA?!?!?!?!?!  Needless to say, I almost fell off my chair!!!  I thought my news of lymph nodes being clear was starting to sound pretty good.... well, I don't mean "good" but you know, not "survival" discussions.  Then they told me that we should not pursue having another child (as were in the midst of trying & really hoping for). 

Sounds pretty scary & even scarier when I go online to research more. Not sure what to think.... or which part of this should be keeping me up at night.  Also, I got a second opinion from another Mela specialist & he said Mitosis is only relevant if primary is less than 1mm & you are determining whether or not to do SNB.  Have you heard this?  I have mitosis, which one group seems really concerned about in terms of risk for recurrence.  Other doc said no longer relevant.  What have you heard?  Should I really be "focused on survival" and also halt the baby plans? 

Thank you!  You all seem like an amazing group of people -sorry we have to meet this way!  :)

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