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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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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bcl's picture
Replies 14
Last reply 2/26/2011 - 11:26pm

I don't want to write these words, but feel I should tell everyone now that our dear friend Cass passed away this week. She was known here for her brilliant scientific mind, and her equally brilliant soul. She emailed practical advice and encouragement to many people  - gently coaching them to never ever give up. Cass was a strategic fighter, and one of the first responders to PLX4032 -and it granted her one of the longest periods of stable disease thus far. Even when the mel came back with a vengeance she refused to let doctors tell her her situation was dire, as she believed wholeheartedly that she would beat melanoma.  And in spite of hospital screw ups, and the trials and tribulations of everyday life, she succeeded for a very long time.
I apologize for saying this here, but I hate melanoma so f'n much, and know Cass is with me on that. She will be missed.

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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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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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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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