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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DeniseK's picture
Replies 8
Last reply 5/11/2013 - 1:34am

Hello my fellow Warriors!  Long time huh?  Yes I'm still alive and kicking, kicking pretty good actually.  It's been a rough couple of months but I'm making it through.  Last I posted I was suffering horribly from nausea.  I lost 30 lbs in a month and was super weak.  My Z dosage was 3 x 2, I dropped it myself to 2 x 2 just to feel better, my doctor was a bit upset with me but it's still working and I"m definately feeling better.  Sometimes I will stop taking it for a few days if I"m feeling bad but go right back on it, so far so good nothing is growing and my tumors have significantly decreased or disappeared.  I"m not NED as of yet but hoping to get there.

My WBR didn't kill the brain lesion but either the WBR or the Z reduced the size from 12mm to 8mm.  I"m going in for SRS starting June 10th.  I had to delay things because I"m going on a cruise this next Monday-Friday.  I'm going to Mexico so I have plenty of sunscreen.

I just wanted to drop in and let everyone know how I"m doing.  I"ve been cruising around the site seeing how people are.  May marks the 5th month that I've been on Z and I'm getting a little anxious hoping it'll keep doing it's thing, but the good news is my brain is officially stable for 12 weeks and I'm looking into trials.  I hope there's something out there that will cure us all!!

Lots of Love,

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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awillett1991's picture
Replies 11
Last reply 5/11/2013 - 1:28am

All,
Starting Merck's anti PD1 tomorrow. Hoping for the best. I could really use whatever advice, prayers or good mojo you can send my way.

Thank you,
Amy

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BrianP's picture
Replies 1
Last reply 5/11/2013 - 12:17am
Replies by: JerryfromFauq

I never get tired of reading optomistic articles.  I love the sentence about one day melanoma being a chronic treatable disease.

 

NewsApril 30, 2013

Therapeutic Combos Make Inroads in Advanced Melanoma

IMNG Medical Media, 2013 Apr 30, B Jancin

 

 

WAILEA, HAWAII (IMNG) – “The past 2 years have been a really exciting time for those of us who have spent the last several decades” in the field of melanoma, said Dr. Allan C. Halpern, chief of the dermatology service at Memorial Sloan Kettering Cancer Center, New York.

“We are in a whole new place with a very promising future for turning stage IV melanoma into maybe a chronic disease for many patients, instead of a death sentence. For some patients, we’re already seeing what may be cures,” he said at the Hawaii Dermatology Seminar sponsored by the Global Academy for Medical Education/Skin Disease Education Foundation.

The greatest enthusiasm in the field now involves combining a pathway-targeted agent, such as vemurafenib, with an immunologic checkpoint blocker, such as ipilimumab. The vemurafenib knocks down 60%-70% of metastatic melanomas temporarily and the ipilimumab promotes durable responses.

But there’s a formidable economic obstacle to this approach: The strongest drug combinations often put big pharmaceutical companies in the uncomfortable position of having to cooperate with their competitors in expensive research projects. “A lot of the drug companies, to their credit, are finding ways to make it work,” Dr. Halpern said.

Dr. Halpern detailed the therapeutic history that has revolutionized the treatment of metastatic melanoma.

Prior to 2011 there were only two Food and Drug Administration–approved therapies for metastatic melanoma, dacarbazine and high-dose interleukin II. Both were unimpressive. The therapeutic dry spell has ended, he said. “There are for the first time in melanoma, instead of no hopeful drugs, a slew of hopeful drugs.”

Targeted therapeutic approaches, the result of laboratory insights into the molecular pathways to melanoma and the key genetic mutations involved, led to the development of vemurafenib, a selective, first-in-class BRAF inhibitor approved in 2011.

“Vemurafenib is an astounding drug. When you give it to a BRAF-mutated cell, it essentially turns off the cell’s metabolic activity.” When given to patients whose tumors test positive for the BRAF mutation, “it’s dramatically effective in 60%-70%.” But the response does not persist. “After about 6-18 months, the tumor develops resistance to the drug. It’s like somebody hit a switch to turn the tumor back on. The tumor comes roaring back, in the same places for the most part,” Dr. Halpern said.

As a result of this limited success, ongoing clinical trials are aimed at determining whether dual pathway blockade using combination therapy will provide more durable responses. Trials are underway with the oral BRAF inhibitor dabrafenib plus the oral MEK 1/2 pathway inhibitor trametinib. Other dual pathway combinations are also under study in melanoma.

The prospects are even more promising, according to Dr. Halpern, for immunologic checkpoint blockade, which is based upon the concept that some cancers progress because the immune system turns off prematurely and stops battling the malignancy. Ipilimumab is one such agent. An anti-CTLA-4 antibody, ipilimumab enhances T-cell activation and proliferation and has earned FDA approval as single-agent therapy in advanced melanoma.

Tumors often don’t begin to shrink until after 3-4 months, but the response is impressively durable in the roughly 30% of patients who respond to immunologic checkpoint blockade.

“These people look like they might be cured,” said Dr. Halpern.

Another important immunologic checkpoint molecule is PD-1. The anti-PD-1 agent known as MDX-1106 appears to be nearly as effective as ipilimumab, but with less toxicity. The early impression from ongoing clinical trials is that dual immunologic checkpoint blockade using anti-CTLA-4 therapy along with an anti-PD-1 drug provides synergistic anti-tumor activity.

Dr. Halpern reported serving as a consultant to Canfield Scientific, DermTech, SciBase, Quintiles, and Lucid.

SDEF and this news organization are owned by the same parent company. 

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Arlenellen's picture
Replies 11
Last reply 5/10/2013 - 12:27pm

My husband recently had a SLNB and a right cheek excision with plastic surgery. Although the results said there was no evidence of residual invasive melanoma on his cheek, it also states "residual melanoma in situ in a background of cicatrix. It then goes on to state, melanoma in situ measures0.4 cm in horizontal dimension and lies 0.4 cm from the nearest epidermal edge or resection. All surgical margins negative for melanoma.
The lymph node came back negative for melanoma. I am very confused. Can someone more experienced than I help me understand this? BTW the histologic type is nodual which I understand to be the fastest growing.

Thank you
Arlene

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Gene_S's picture
Replies 5
Last reply 5/10/2013 - 8:37am
Replies by: Anonymous, Hstevens0072, Gene_S, benp

  On the next NaturalNews Talk Hour show this Sunday, you'll hear

Charlotte Gerson talk about how to eliminate cancer - naturally.
 
At 91 years young, Charlotte is simply amazing!  Show details below:
 
If you can't make the show or miss it - here's a little summary of the Gerson Therapy:
 

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

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mama1960's picture
Replies 2
Last reply 5/10/2013 - 6:10am
Replies by: POW, Harry in Fair Oaks

During CAT scans today to map out radiation the doctor mentioned that a lot of the bone been "eaten away". Will the bone regenerate?

It is what it is.

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Location is just west of the beltway  a couple of blocks off  Rt 50.

 

From: "Marsha Komandt" <Marsha.Komandt@inova.org>
Sent: Thursday, May 9, 2013 7:35:19 PM
Subject: Upcoming Melanoma session May 30

For this month’s Quaarterly Melanoma Group session INOVA has three returning  guest speakers joining us for Melanoma Awareness Month.

Attached is the flyer for the Thursday, May 30 date from 6:30 – 8:00 pm.  For planning purposes of room assignment and refreshments, please do register on our website by the day before, Wednesday, the 29th.  Many thanks.

 

For those of you that may have a metastatic skin cancer or melanoma, there are two webinars sponsored by CancerCare in NYC, one tomorrow May 10 from 1:30 to 2:30 for metastatic skin cancer; the other Friday, June 14 for metastatic melanoma.  You may register by calling them at 1-800-813-HOPE (4673) or online at www.cancercare.org/connect.

You can also listen to previous workshops on their CancerCare website by logging on to www.cancercare.org/podcasts.  So if you miss one of the above, you can go into it at a later date.

 

Do hope to see many of you the end of this month.

Marsha J Komandt, RN, BSN, OCN

Oncology Education Coordinator

Life with Cancer, IHS

8411 Pennell St.

Fairfax, VA 22031

703-698-2530

703-846-0924 (Fax)

marsha.komandt@inova.org

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

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thrashter's picture
Replies 2
Last reply 5/9/2013 - 8:36pm
Replies by: Tina D, kylez

I received the great news of being N.E.D. after my last scan. This info came to me from my surgeon. I have an appointment with my oncologist on Tuesday to see if further bichemo is going to take place. I'm torn on weather to continue(4th) round or not. If i am currently N.E.D. should i submit my body to further toxicity? Also I thought i would be much happier about hearing those words but it seems maybe not to have sunk in. Any others hearing they are N.E.D. and still feeling like nothing changed?

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Anonymous's picture
Replies 1
Last reply 5/9/2013 - 5:45am
Replies by: Anonymous
François's picture
Replies 4
Last reply 5/9/2013 - 12:46am

Last week I had the results of the CT scan I had few days before, just after four month on Zelboraf. My oncologist said that 2 lungs nodules have disappeared and one has no significant size. In my groin, where I have been 4 times on surgery, I still have "something" that is 19mm. This "thing" has not changed on my last 3 scan and he said it's probably something that has nothing to do with, otherwise it would have reacted as the other nodules. He didn't even mentioned a biopsy. On the other hand I suggested him to stop the treatment and start a period of on and off to avoid resistance, as I could read on few posts but he said this is not yet clinically proved. I had a seboreica in my left arm for years that has disappeared as well, I find this amazing, because I could really watch shrinking day after day. Next scan is programmed for June last week and I hope been Ned for this day. Thank God and praying every day this drug keep on working on me and to all the people who are in the same situation.

François

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lisab60's picture
Replies 0

I had surgery 2 months ago to remove lymph nodes in my left groin and the primary tumor on my left foot. Right now I have "No Evidnce of Disease". My Dr. Gave me the option of interfuron for 1 year or bio/chemo for 4 months (1 week on and 3 weeks off). I chose bio/chemo. I start treatment on the 21st of may at MD Anderson. Has anyone had this treatment for "PREVENTITIVE" measures? I would like to know what to expect. I know everyone is different but just curious. Thanks.....Lisa

"Bring the Wood"

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Drew N's picture
Replies 4
Last reply 5/8/2013 - 3:01pm
Replies by: Drew N, mzammit, Anonymous, Randy437

I have had my 6 month checkup at MDA and remain NED. That's how it's been since surgery in January 2009. Grateful for each day I get.

Also grateful to live 25 miles from MDA, and for curcumin. I'm convinced of the latter's efficacy.

Peace.

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gail6664's picture
Replies 4
Last reply 5/8/2013 - 12:29pm
Replies by: gail6664, Janner

I am a 48yr old woman that has just been diagnosed with clarks level 4, what does this mean? I had a topical byopsy done which was negative, but was told it was an atypical mole that needed to be checked. Went to a surgeon had it removed, and was told it was a clark 4, went back and had a deeper and wider proceedure done, now waiting for results.

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It was truly an awesome day......walked 3.3 miles with 9 members of my family, even 2 of little grandkids who were only 4 and 5 when Jim passed.  The day was beautiful with beautiful people.  I had donations of $520.00 .....I was so happy for that....met Barbie Girl, Jackie Doss, Margaret Fowler, Cindy Rutledge.....so many people who have lost loved ones way too early.  I walked for all our Angels and for all warriors still fighting....Hugs to all of you. Thanks to Catherine Murrray and Kyle Clarke......

Take Care,

Sherron, wife to Jim FOREVER!

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I have been approached by a journalist from Bloomberg who was ts to speak with patients who have been on a trial for a PD1 or PDL1 drug. If you are interested please email me offline at tturnham@melanoma.org

Thanks

Tim--MRF

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