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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Here is an interesting article about mebendazole, a commonly available anthelmintic drug. 

http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&c...

For more info see: http://www.drugs.com/cons/mebendazole.html

 

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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After 3 months I failed the IPI. Most of my tumors have grown alot and 8 new ones have arrived. For me... The IPI was like feeding melanoma candy that it loved.

Dr Weber told me I have a couple of months to live if I do nothing. He reccommended sending me to get  Carbotaxol this week in Moffit while I am waiting for the processing for an appointment to MD Anderson in 2, 3 or 4 weeks if I am lucky.

Does anyone know if the Carbotaxol treatment would cause a delay in getting any kind of trial 1 treatment. I have heard of so many things that cause delays with trials........I don't want to agree when I should disagree.

Please help.

Rocky (Stage IV LIver Mets)

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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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Jim M.'s picture
Replies 4
Last reply 2/27/2011 - 5:40pm
Replies by: lhaley, Sherron, Jim M., Fen

Hi everyone,

 I haven't posted for awhile but I'd like your advice. Two weeks ago I developed some symptoms in the gastrointestinal tract. I get bloated every time I eat, my stools have changed in consistency and I have some abdominal pain. I had a CT Scan and Dr. Weber emailed me the following, "The scan is OK except there is an equivocal area in the small bowel, cause unknown. It is in the ileum which is at the end of the small intestine." The plan is for me to swallow a contrast and have the area x-rayed over time to detect abnormalities in the small bowel (called a radiological study). Stool samples came back normal.

 I know there can be many causes i.e., overeating, not enough water, bacterial overgrowth, too much fiber or cancer. I'd like your input on this and what your experiences have been with GI issues

 God Bless to all,

 Jim M.

 stage 3C

NED 3+ years

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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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carol b's picture
Replies 7
Last reply 2/26/2011 - 9:56pm

Well i received 9 doses of IL2. The goal was 14, but we had to skip dose 7 because of my blood pressure and i got 2 more after that and then they decided i had enough. My heart rate finally got stabilized a day and a half later. I was delusional, Had hallucinations which continued 3 days after i got home.OH YEAH little fairies turned into beautiful butterflies .I only had 1 bad hallucinations and i was in the shower and thought i was bleeding out of my feet. The itching is terrible. The pain was tolerable with oxycodon plus a few i cant remember. Usually got sick at my stomach about 3 hours after each treatment.. I had absolutely no appetite. Your taste buds go on vacation, mouth sores take there place. I am to return March 1 to start all over again and im not healed from the first round. So im a little scared .Actually im terrified.surprise I don't know if its doing any good but my husband says he thinks its shrank a little. I tell him to stay positive honey,,,lol...All i know is it makes my tumor hurt like hell. I have edema in my right arm because the PICC line was in my left arm and tumor under my right arm. The started taking my blood pressure in my leg but when it started dropping they wanted to make sure it was accurate so they took it in my arm and thats what causes the edema. Personally i don't feel like i have had enough time to heal before its time to go back but i guess they know what they are doing. Well thats all the info for now.. Peace to all and prayers for each of you..

Carol Bellinger

Metastatic Melanoma

Stage 4

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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Anonymous's picture
Replies 7
Last reply 2/26/2011 - 11:31pm
Replies by: Amy Busby, Vermont_Donna, Carmon in NM, Anonymous

Hi. I know that posting late on a friday afternoon wont get the best response time, but I feel I am in need of more opinions before I speak with my doctors on monday morning.

I am a melanoma patient, who has been on various pain medicine regimens for a few years for various cancer pain issues.

Every 6 to 8 months, my doctors change my meds because I am so afraid of dependency and addiction.

In the past my meds have been: morphine, oxy (codone and contin), dilaudid, fentanyl, methadone, etc....

You name it and I have been on it basically.   I have been on my current meds for about 3 months and have begun to feel they are not working properly. I feel my pain more often and more intense, I get wierd muscle cramps and spasms, I get anxious and have headaches alot too.

Today I realised I may be dependent upon my current meds  and that my body has adjusted itself to the amount of medicine and is essentially "craving" more.

What I am wondering is if anyone else on this board has experienced this and what, if anything, did you do?

I dont know if I can live without any meds, as the pains I experience can be quite debilitating. As it is, my energy levels have gone down the toilet in the past years.

Any advice or help would be so incredibly appreciated, I cannot even begin to say thank you!

I have appointments scheduled with my pain management team the second week of March, but will be calling them if any of these issues get any worse.

And just in case I forgot to mention before, all of the side effects I listed DO go away after I take another dose of my medicine.

I know there are alot of people on this board with more knowledge than me, as well as nurses and caregivers who have dealt with this sort of thing.

Please help me by responding if you can.

Thank you.

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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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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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lisa36's picture
Replies 9
Last reply 2/27/2011 - 10:27pm
Replies by: alicia, lisa36, Vermont_Donna, Anonymous, Janner, JoanR, lhaley

It has been a while since I have visited this board.  I keep the entire community in my thoughts and am frequently praying for all effected by this disease.

My first primary was dx in 2006 - Breslow .31 level 4 - SNB neg.  I just had my 5 year check up and was cleared for annual visits and told by my melanoma specialist the odds of this thing coming back are slim to none - Yippee! ....but wait, the next day I received a call from my derm who had removed a mole the week prior stating I have another melanoma.   Derm wants me to go back to melanoma specialist and have the SNB even tho it appears it was caught early.  This 2nd melanoma was a mole that was frozen off over a year and a half ago.  Both docs on mutiple occasions said this is NOT cancer and not to worry.  It started growing back pink -  not the original brown color.  It was then I insisted my derm remove it.   I am very concerned that this mole was not removed and sent for biopsy in the first place and am concerned of the accuracy of the pathology report  because of this.   Anyone have this experience?  Is it possible the mole was benign prior to it being burned off and then grew back malignant?  Is it more likely my doc missed this and burned off a melanoma?  Also, anyone have SNB with such thin lesions?

Below is the path report. Most I understand but a few points are confusing.  Any help with interpretation is greatly appreciated.

The bulk of the process is confined to the epidermis and there is only a small focus of papillary dermis involvement in one or two areas.  The thickness mesuresment seems to be largely accurate although it does extend focally to the base of the specimen.  The lesion would be classified as Clarks level 2 as the paillary dermis is only focally involved in these sections.  Breslows greater than .4mm - There is an asymmetrical melanocytic neoplasm with single malanocytes present diffusely thoughtout the epidermis with minimal melanin.  There is focal involvement of the dermis. Less than one mitotic figuer per high power field was seen.  Thereis a dense inflammatory infiltrate of lymphocytes as well.

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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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KellieSue's picture
Replies 11
Last reply 6/22/2011 - 4:55am

Well, thankfully my insurance company approved me starting the B-RAF trial, and even quickly at that.

I had to have an extensive eye exam, CT scan of body, ECHO and EKG. Yesterday I met with the head of the trial and was excited to hear I was randomized to the B-RAF drug. She was quite happy too!

I took my first pill last night and am excited to be doing something, instead of just waiting, waiting, waiting for this disease to start growing again in my body!

Here's hoping in 6 weeks I have at least stable scans!

Kellie(from Iowa) Stage IV since June 2008 currently on B-RAF

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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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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