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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Hi All!!

 

I have been battling stage IV melanoma and some how was lead to the biological medicine approach. It has been a great success and I am doing very well. My tumors are dissipating and I feel better than I ever had in my life.

I am now passionate about sharing my story. Follow my blog to hear more about my journey through not only healing my body one cell at a time but also learning a wealth of information about what does our bodies good (and what doesnt).

 

Happy Reading.

 

http://peacelovemelanoma.blogspot.com/ 

 

Please feel free to contact me at lmato17@gmail.com  or on Facebook at Lisa Amato Formato.

 

Peace & Love,

 

Lisa

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Hi All!!

 

I have been battling stage IV melanoma and some how was lead to the biological medicine approach. It has been a great success and I am doing very well. My tumors are dissipating and I feel better than I ever had in my life.

I am now passionate about sharing my story. Follow my blog to hear more about my journey through not only healing my body one cell at a time but also learning a wealth of information about what does our bodies good (and what doesnt).

 

Happy Reading.

 

http://peacelovemelanoma.blogspot.com/ 

 

Please feel free to contact me at lmato17@gmail.com  or on Facebook at Lisa Amato Formato.

 

Peace & Love,

 

Lisa

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mom3girlsFL's picture
Replies 2
Last reply 2/26/2011 - 2:27pm
Replies by: mom3girlsFL, Suzan AB

Quick history before I let you in my head:

mel '92, .9mm shin

7 yrs NED

2010 inguinal node dissection 9 of 11 nodes positive

start interferon

sept 2010 obturator node mel, radical node dissection, 4 of 5 nodes positive

stop interferon, "watch and wait" since nov 2010

Self #1 "You didn't fail interferon, interferon failed you"

Self #2 "You still failed"

Self #1 "You had a clear scan in November"

Self #2 "Yeah, how long will that last???"

Self #1 "Get out of my head!!!!"

Self #2 "You need me to keep you focused, keep on top of things"

Self #1 "I don't want this anymore, I want my NED, stage 1, 99% cure rate back"

Self #2 "I'm not going anywhere anytime soon...or am I?"

Scene fades into the smurf song -la,la, la, la, la, la...

Okay, so the smurf song - don't ask, I don't know why!  Anyway, another day, another mental challenge!

Laurie

Do not fear tomorrow, God is already there.

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Extended Dose Ipilimumab with a Peptide Vaccine: Immune Correlates Associated with Clinical Benefit in Patients with Resected High-Risk Stage IIIc/IV Melanoma.

Sarnaik AA, Yu B, Yu D, Morelli D, Hall M, Bogle D, Yan L, Targan S, Solomon J, Nichol G, Yellin M, Weber JS.

Authors' Affiliations: Departments of Cutaneous Oncology and Biostatistics, Moffitt Cancer Center, Tampa, Florida; Departments of Medicine and Preventive Medicine, Keck/USC School of Medicine, Los Angeles, California, Cedars-Sinai Medical Center, Los Angeles, California; and Medarex, Inc, Annandale, New Jersey.

Abstract

PURPOSE: To determine safety and feasibility of adjuvant ipilimumab following resection of high-risk melanoma and to identify surrogate markers for benefit.

EXPERIMENTAL DESIGN: In this phase II trial, 75 patients with resected stage IIIc/IV melanoma received the CTLA-4 antibody ipilimumab every 6 to 8 weeks for 1 year. Eligible patients received further maintenance treatments. The first 25 patients received 3 mg/kg of ipilimumab, and an additional 50 patients received 10 mg/kg. HLA-A*0201+ patients received multipeptide immunizations in combination with ipilimumab. Leukapheresis was performed prior to and 6 months after initiation of treatment.

RESULTS: Median overall and relapse-free survivals were not reached after a median follow-up of 29.5 months. Significant immune-related adverse events were observed in 28 of 75 patients and were positively associated with longer relapse-free survival. Antigen-specific T cell responses to vaccine were variable, and vaccine combination was not associated with additional benefit. No effects on T regulatory cells were observed. Higher changes in Th-17 inducible frequency were a surrogate marker of freedom from relapse (P = 0.047), and higher baseline C-reactive protein (CRP) levels were associated with freedom from relapse (P = 0.035).

CONCLUSIONS: Adjuvant ipilimumab following resection of melanoma at high risk for relapse appeared to be associated with improved outcome compared to historical reports. Significant immune-related adverse events were generally reversible and appeared to be associated with improved relapse-free survival. Although vaccination failed to induce a consistent in vitro measurable response, a higher change in Th-17 inducible cells and higher baseline CRP levels were positively associated with freedom from relapse. Clin Cancer Res; 17(4); 896-906. ©2010 AACR.

PMID: 21106722 [PubMed - in process]PMCID: PMC3041838 [Available on 2012/2/15]

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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emmapeal's picture
Replies 0

Tari, once again I can't believe you aren't here to have a Jagger Bomb, but I had one for  you and Jen....4 years, I sill can't believe it......I miss you so much......

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WalterA's picture
Replies 3
Last reply 2/25/2011 - 9:40pm
Replies by: King, lhaley, Vermont_Donna

After it was delayed for a week, I had radiofrequency ablation for the lesion on my liver yesterday. The pathologist confirmed that it was melanoma. The doctor said he took good margins. I feel pretty rugged today, but I'm going to remain optimistic.

"Thus I am!" -- Guido in "The Ring and The Book "One day is worth two tomorrows." -- Benjamin Franklin "If it ain't baseball, who cares?" -- Me

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chrisS's picture
Replies 8
Last reply 2/25/2011 - 8:45pm
Replies by: Anonymous, chrisS, Carmon in NM, Carole K, jag, KatyWI

It's been a tough fight so far. Melissa was diagnosed with stage 4, tumor in chest, liver, and back, 6 months ago. It seems like yesterday we were turned down by NIH and we went in for our first IL2 in Sept along side himynameiskevin. It was both of their first weeks. It seemed to be working(20% shrinkage) after 6 admittance. We began a 2.5 month break 3 weeks ago but she had headaches this past weekend. Took her in yesterday and found out 4 mets and one big one in the front that needs to come out ASAP. My young(32) beautiful, full of life wife is so strong. Prob in a little bit of denial.

Anyone gone through the surgery and know what the risks are?
Will she change? Should I take a leave of absence from work? So many questions.

Happy the tumors in her body have shrank. It is a blessing we went in because we are going to Maui on fri for 3 days, and had some scuba planed. Apparently the water pressure my have caused brain bleeding on the tumors. Man that would have been real bad.

One other question, has anyone traveled in an airplane with brain mets? Is the pressure a problem?
She is now on steroids that have helped her headache and I assume brought down the initial swelling.

Thanks everyone. This board has always been so informative and the LOVE on here is incredible!
Keep up the good work!

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Lori C's picture
Replies 9
Last reply 2/25/2011 - 7:26pm

Hi to all.   I have published another story about Will's melanoma fight, if anyone would like to read it

http://www.dailykos.com/story/2011/02/23/948581/-And-thats-all-I-know

I am following this board and keeping you all in my thoughts & prayers.

 

Lori, caregiver and soul mate to Will

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Wetterhorn's picture
Replies 6
Last reply 2/25/2011 - 4:39pm

Just thought I would post that my surgery was a success last Thursday at Sloan Kettering. Had a partial resection of my small bowel, only 1 lesion was found. The recovery has been pretty remarkable and while the surgery was not done laproscopically, I have made significant strides each day. Spent 3 nights in the hospital there and am now back home in full recovery mode. I suppose I can say NED again, but with this being my 5th surgery, I'm a bit hesitant to label myself that. Anyway, needless to say, its a huge relief to get it over with and to be back on the mend again.

Thanks to all the docs and nurses at Sloan. 

Wetterhorn

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This abstract (published last month) has confirmed early indications of a survival benefit in a randomized phase 3 trial.

http://www.liebertonline.com/doi/abs/10.1089/cbr.2010.0865

 

Frank

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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Thank s to all who have replied to my interferon question and concerns. After hearing your stories and reasonings I feel quite a bit more relaxed and sure of my decision. By the way I will be starting the week of the 7th of March. The wait and see aproach does not get it for me as I have always been a hands on , gotta go do something type person most of my life, and just setting around and wondering about it would surerly have driven me crazy and made me wonder and second guess myself. So untill I begin, Thanks again for everyones support and words of wisdom here. 

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lindas58's picture
Replies 3
Last reply 2/24/2011 - 9:35pm

My husband was diagnosed in Dec 2010 with a melanoma on his back. Has since been removed along with the sentinal nodes in his armpits. (they were clear).  I am very confused about his diagnosis & was hoping maybe you could answer some questions  for me. Initial pathology report was very brief, 0.42 Breslow depth,  clarks level lll, 1.6 x 1.1 cm with ulceration. We can't seem to get an answer on what stage this is or if we should be concerrned at all. The drs feel there should be no re-occurance. I am beside myself with worry it will show up elsewhere. The oncologist did tell him a few things to watch for but I feel this isn't enough. Am I just a worry wort?

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Bombeni's picture
Replies 7
Last reply 2/24/2011 - 10:49am
Replies by: Bombeni, Janner, 2atlascedars, Anonymous, KatyWI

Hi everyone.  I had a sore develop on my neck around Thanksgiving.  I have never had any moles, and for a couple of weeks I figured it was a bug bite.  It is about half the size of eraser, blackish but when I wash sometimes the surface sloughs off and it is red and bleeding.  Oh, early last Fall I lost 25 pounds in a matter of a couple of weeks, having weighed the same thing for 20 years. 

I am a computer dodo.  I have a camera phone and took a picture of this thing.  I wish I knew how to send the picture for others to look at.  I did see a derm. and he is going to excise a very large area on Feb. 7,  I fully expected for him to do a simple biopsy the day I was in his office TWO WEEKS AGO, ERRRR.   But he only works part time now and first appt was Feb. 7 to excise this.  He drew the size and shape of a  human eye which he is planning to take out.  Now, doesn't that seem like a somewhat radical thing, taking that much area and of course will have a scar (he said 6 stitches) before he knows for sure if it is cancer?  I know he is one of the most respected derms in Tulsa, but does anyone feel I should go somewhere else to have a simple punch or shave (I've been studying) biopsy first?  Thank you for any replies.

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ValinMtl's picture
Replies 3
Last reply 2/24/2011 - 9:46am
Replies by: ValinMtl, Vermont_Donna

Hi Donna, I read your reply below and was wondering about the"solaris garment".."its thick and padded kind of like an oven mitt, that you slip your foot and leg into..it goes toes to groin".  Could you tell me where you were able to purchase it? 

I fly up from Florida for CT scan on Tuesday...stressful time.  Left groin is still swollen and the new sub-qs are still there although many of my other lesions have diminished....I'm praying hard.

Val

Live Laugh Love Nothing is worth more than this day!

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mzeigler's picture
Replies 1
Last reply 2/24/2011 - 9:19am
Replies by: nickmac56

My wife completed 4 rounds of ipi and had our first scans.  No new mets!  The largest met did not change and the smaller ones looked

slightly larger but not much change.  Now we wait 4 weeks and and repeat scans.  She seems fatigued, and has stiffness and aches

in her joints and muscles.  We can put up with it if it stops the melanoma.  Mean while, doctor is testing for the braf mutation if the ipi does

not work.   He has access to braf/mek drugs and one called E7080.  The one he uses will depend on the test.

It's been a long haul.

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