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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Durable Complete Responses in Heavily Pretreated Patients with Metastatic Melanoma Using T Cell Transfer ImmunotherapyClin Cancer Res. 2011 Apr 15;[Epub Ahead of Print], SA Rosenberg, JC Yang, RM Sherry, US Kammula, MS Hughes, GQ Phan, DE Citrin, NP Restifo, PF Robbins, JR Wunderlich, KE Morton, CM Laurencot, SM Steinberg, DE White, ME Dudley 

Currently available and experimental therapies for metastatic melanoma produce very few durable complete responses and, thus, a low chance of cure. Rosenberg et al from the National Cancer Institute report results of a new approach for these patients: the adoptive transfer of autologous tumor-infiltrating lymphocytes (TILs) selected for antitumor activity and expanded in vitro. The study involved 93 patients with metastatic melanoma who were heavily pretreated with standard and experimental regimens.... 

http://www.oncologystat.com/journals/journal_scans/Durable_Complete_Responses_in_Heavily_Pretreated_Patients_with_Metastatic_Melanoma_Using_T_Cell_Transfer_Immunotherapy.html 

 

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washoegal's picture
Replies 8
Last reply 5/31/2011 - 9:19pm

I am one of the "lucky" ones  with the BRAF mutation or so says my ONC.  Anyway my question for some of the more well studied in this group, if you have a gene mutation does that mean it effects you no matter you status (ie NED).  Specifically, is that Gene mutated within your body not just a Melanoma  Tumor?  What got me wondering was when my Onc suggested I have my regular cancer screenings Breast, Colon, etc more frequently.  Then I started reading the BRAF shows in Colon, non small lung, etc.  What I know about genes I can fill on about two lines.

Thanks,

Mary

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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ShariC's picture
Replies 16
Last reply 6/5/2011 - 4:34pm

Hi All - I'm afraid I have a type of post that is fairly common and I'm just needing to sound off and express my anxiety to a group of people that can understand and empathize.  I'm Stage IIIc.  Finished biochem last February.  Over the past 10 days my stomach has become increasingly bloated and uncomfortable.  I changed the way I ate, rested differently, exercised, rested, etc...  Anything to alleviate the issue.  Its getting worse.  I would now characterize my abdomen as distended and its increasingly uncomfortable.  I called my oncologist and his nurse recommended I expedite my PET scan.  It is tomorrow AM.  I hope to have results by tomorrow afternoon.

I'm a wreck.  I KNOW many, many of you have been through this...and it doesn't matter how much you prepare ... its NEVER a good day to find out your cancer is back. 

MM is so random and variable.  Some people get years ... some months.  At any given time I try to tell myself to be happy with whatever time I do get. 

Maybe its not back, maybe this is an over-reaction? 

Thanks for listening.  - Shari

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carol b's picture
Replies 16
Last reply 6/3/2011 - 10:26am

First Thank all of you for you words of encouragement and all your prayers. Im going back in the morning to see how many bags of IL2 i can take.. Please say a prayer for me as i know you all will.As My friends and melanoma family i

will take you with me to the hospital in my heart. I will talk to you in a week or so..Prayers for all of you. Patients and caregivers.

Carol Bellinger

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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This may be of interest, it is from The Life Extension Foundation (www.lef.org).

Given the vital role of the immune system in keeping patients cancer-free after treatment of all kinds of tumors, researchers in Rome studied immune-boosting treatments for patients with one of the most deadly and treatment-resistant cancers, malignant melanoma.31 Early and aggressive surgery has been the mainstay of treatment for this deadly form of skin cancer.32 The addition of treatment with immune-boosting cytokines such as interferon-alpha and interleukin-2 has slightly improved survival but at the cost of significant side effects.33 The Rome researchers had noted that melanoma patients have low levels of CoQ10, and reasoned that the addition of the nutrient to interferon therapy might enhance its success while reducing side effects. They conducted a three-year trial of uninterrupted treatment with low-dose interferon-alpha only, or with the addition of 400 mg/day of CoQ10 in patients with early melanoma following surgical removal of the tumors. They followed the patients all the way out to 5 years following treatment. Remarkably for such a lengthy study, no patient withdrew from the trial as a result of side effects. Most importantly, the disease progressed much more slowly in the interferon plus CoQ10-treated patients, who also had a significantly reduced rate of recurrence of the tumors than the unsupplemented group.31

Read complete article at:

http://www.lef.org/magazine/mag2008/feb2008_Coenzyme-Q10-And-Cancer_02.htm

Best wishes,

Gene

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Julie Griffiths's picture
Replies 11
Last reply 6/1/2011 - 1:22am

I haven't been on the board for a LONG time --- I used to be julieincanada but I can't figure out how to sign in under that with the brand new site!!!

Briefly my husband Peter was dx Stage 3 in August 2001. He was given the very dismal px of the time and had a node dissectrion, another surgery for a regional recurrence, a year of IFN and radiation. The treatment took a huge toll on him and our family. Peter ( we think because of having IFN and radiation at the same time) had severe brain fog and was off work for 7 years ( unable to drive for 3). He still has peripheral neuropathy , some bone necrosis in his rib from the radiation, and scarring from the radiation.

BUT he is here to tell about it. Was it easy ....no way....

the reason I decided to reconnect was a result of a conversation I had with our daughter yesterday. She was dx with a Brain Tumour 18 months ago.. the short term is wait and see post surgery and the long term in not very promising ... she is 40. She has connected through a similar board for BT with a 16 year survivor ... how great is that! Then I was thinking that there are probably many out there - they just get on with their lives and the "Board" time dwindles.

Soooo there is a survivor in BC In Canada who is 9 years post dissection, IFN, radiation and more that one bump in the road. He has a life, he has seen two grandchildren born and he has been back working for 3 years. Are we terrified everytime he goes for his annual check - you have to believe it .... He recently qualified for life insurance!!!

Soooo have the faith, focus on the success stories and in your darkest moments ( you have to believe we have had many) remember there is hope.

Julie

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JerryfromFauq's picture
Replies 2
Last reply 5/31/2011 - 4:23pm

LONG and Interesting Article which will have running on-line updates.

http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0018257

Abstract:
While advanced melanoma remains one of the most challenging cancers, recent developments in our understanding of the molecular drivers of this disease have uncovered exciting opportunities to guide personalized therapeutic decisions. Genetic analyses of melanoma have uncovered several key molecular pathways that are involved in disease onset and progression, as well as prognosis. These advances now make it possible to create a “Molecular Disease Model” (MDM) for melanoma that classifies individual tumors into molecular subtypes (in contrast to traditional histological subtypes), with proposed treatment guidelines for each subtype including specific assays, drugs, and clinical trials. This paper describes such a Melanoma Molecular Disease Model reflecting the latest scientific, clinical, and technological advances.

I'm me, not a statistic. Praying to not be one for years yet.

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Replies by: boot2aboot, LynnLuc

Although melanoma vaccines sound good in theory, it looks like researchers still have a
lot of work to do. Here is an abstract of a review of the relevant clinical trials:
http://journals.lww.com/melanomaresearch/Abstract/2011/06000/Vaccine_therapy_for_metastatic_melanoma__.1.aspx

Frank from Australia

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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debandmike's picture
Replies 2
Last reply 5/31/2011 - 6:47pm

My husband, Mike is going to attempt to return to work tomorrow after 6 wks. off work and his first series of IL-2. He is still a bit under the weather but wants to try returning to work. He was wondering how long other patients took after IL-2 treatments to return to "normal?" He will have a scan on June 17th, results of scan June 21st and than more than likely back for another round of IL-2 in July.

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Replies by: miu2, NYKaren, boot2aboot, nicoli

Hi guys,

i will target my posting for those of you with hair loss and trying to figure out options...as i looked for something to slap on my head that was'nt

A ugly

B hot as heck

C affordable

i came across stuff that looked like i belonged in Iran...or looking like i was 80 years old...or looking like a bad biker chick...BUT

i found this really cool site (of course not in U.S.) that answers all of my problems with chemo cap...

it is made from a company called Buff

and they make a product called Buff UV visor evo2 which is way hip and cool...they make this visor in all kinds of combos, totally reversable, totally adjustable and wearing it doesn't make me feel like 'ugly victim'...it's great for UV protection and you can wear it when your hair grows back and still look hipcat...

http://www.buffwear.com/catalog/index.php/cPath/53_90

even though it's a UK company, you can still order from the states...i thought the melanoma website should maybe sell these here...

 

stay away from the pink ones...i opted for the black one...i thought that was 'appropriate'...

boots

don't back up, don't back down

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Anonymous's picture
Anonymous
Replies 5
Last reply 5/31/2011 - 9:37am

Has anyone had an issue with an increase in eye floaters with their diagnosis?  I've noticed an increase (or maybe they were there before and I didn't really concentrate on them like I do now?).  I have been to the eye doctor who said things look ok and brain MRI's say things are fine. 

Guess it's just another thing to stress us out!  :) 

Thanks!

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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Gene_S's picture
Replies 10
Last reply 4/18/2012 - 7:14am

 

Scientists reverse stance on sun and cancer: Now they admit sunlight can prevent skin cancer

Learn more: http://www.naturalnews.com/032533_sun_exposure_skin_cancer.html#ixzz1Nrwxbjb9

I am a firm believer in this. The only way to know your vitamin D levels is to have them tested.

The best test is the "25-hydroxy" vitamin D test.

Best wishes,

Gene

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Hope Returning's picture
Replies 6
Last reply 7/27/2011 - 8:11am

Looking for an active kidney cancer discussion group for recommendation on kidney surgeon for a melanoma long term survivor withe tumore (met?) to kidney that needs to be operated.

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Gene_S's picture
Replies 5
Last reply 5/31/2011 - 12:33pm
Replies by: Gene_S, Anonymous, LynnLuc, boot2aboot

see:   http://naturalstandard.com/news/news200602007.asp

Please note that there is a difference in CoQ10 products.

The best one should have "Ubiquinol" on the label not "Ubiquinone".

Best wishes,

Gene

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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shellebrownies's picture
Replies 5
Last reply 5/31/2011 - 8:00am

Don had his chemo treatment yesterday afternoon/evening and he tolerated it extremely well. His liver function tests that Dr. Lawrence had ordered did show a drop in the high levels, but was not stable enough to earn him a reprieve on the trial, so they went ahead with the chemo.

His pain at this time is extremely well managed but is IV; the pain management team still have to figure out a way to get him this level of control with oral medications. Well, we take one step at a time, right? : )

Michelle, wife of Don, Stage IV

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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