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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mama1960's picture
Replies 9
Last reply 5/12/2013 - 12:49am

Ok, I am on Fenogyl patch and hydracodone for pain from bone mets. The problem is, I am having a terrible time with constipation. I am drinking lots of water, eating lots of fruit, taking triple doses of Dulcolax and have even resorted to enemas. no joy. Any ideas?

It is what it is.

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I don't visit up here much...hanging out mostly in Bad Ass Melanoma Group on Facebook...I talked to just before her mega incident and wondering how she is doing now...Lynn

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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mishcakes's picture
Replies 19
Last reply 5/11/2013 - 11:59pm
Replies by: mishcakes, washoegal, michelleaudie, Janner, Anonymous

My sister made me an appointment to see a dermatologist as she was concerned about my acne. The doctor had a brief look at my face, and as he was leaving the room he asked off-hand if I had anything else I wanted him to look at, suspicious moles, yadda yadda. I said actually, yes - one mole that I kind of had my eye on for the last year or so, on my upper right thigh, that was small but two colors, black and tan. He took a look and said, yep, let's remove this, and before I knew it the nurse was back to prep me for a biopsy. Funnily enough I ended up fainting for the first time ever as he was cutting it off, falling into the doctor and spilling my glass of water all over the floor. I woke up still in my underwear after what felt like a nice nap, and quickly realized "oh wow, I'm still at the doctor's office" - weirdest feeling ever! As I left the office I hoped that that would be the end of it, not wanting to have to face the staff again as "that girl who passed out".

 

Unfortunately, as would be evidenced by my joining this forum, that wasn't the end of it. I got that horrible call that we've all had last Friday. "Beginning stages of melanoma, we're scheduling you for a wide local excision, asap. Can you come Monday?" I took notes, said thanks, and called my husband. Then began the internet research. Oooooh boy. Having had no family history of melanoma and not really knowing much about it, all of a sudden the true nature of my diagnosis hit me like a sack of bricks. Since the nurse hadn't sent along the pathology report and the office had since closed for the weekend, all I had to go on was that I was in the "beginning stages" - did that mean stage I? II? How deep was it? I quickly became versed in Breslow's depth, Clarke level, 5-year survival rates, recurrence, metastasis, and the melanoma's favorite spots in the lungs, liver and brain.

 

Despite my best efforts to remain sane and rational, everything I felt or saw became a death sentence. I'd been feeling light-headed and had more headaches since the fainting - it's spread to my brain. I felt a small bit of pain around my left armpit - spread to the lymph nodes. Pain in my chest - it's spread to my lungs. I had a mild sunburn earlier in the spring - oh god, I am such an idiot. I sobbed into my husbands shoulder, "all I want is to grow old with you". Suddenly our happily-planned life of remodeling our home, traveling, enjoying nature, being together, starting a family - began to unravel. "I am 31 years old, why me, why now?"

 

On Monday I received the report. I will paste it below - and would appreciate any feedback from those more familiar with some of the terms. The doctor cut out a chunk of my leg and sewed me back up, and thus begins the waiting game for the next pathology report. I live in Mammoth Lakes, CA - aka, high-altitude (oops) middle-of-nowhere mountains, so will have to find an oncologist nearby, likely in the Carson City/Reno area. If anyone has an recommendations for doctors in this area please let me know.

 

So, here I am. I'm 31 years old, fair-skinned (Scandinavian ancestry), dark blonde hair and brown eyes, no family history of melanoma, or cancer for that matter, save my paternal grandmother who died of ovarian cancer. I grew up in northern Illinois, and spent summers swimming and playing soccer, but always with sunscreen. I did use tanning beds occasionally in my late teens and early 20s - a few times to prepare for a vacation to Mexico, a few times as it helped clear the acne on my face. Holy hell, if I'd only known...

 

I moved to Mammoth Lakes in 2009, elevation 8,000', and when going on hikes or planning on being outside for any period of time would always wear sunscreen - but if walking to the grocery store or poking around in my garden for awhile, would not. Of course I wish I could kick myself now, but I didn't burn and wasn't out for "long", so thought it was okay. I had a friend randomly stop over early spring, and as it was one of the first nice days of the season, we sat outside to chat. As it happens, we chatted for longer than expected, and I burned mildly on my right shin. Idiot, idiot, idiot...!

 

Here are some of the questions that I still have:

- Should we consider moving to a lower elevation? We love living here, but it's not worth my life.

- Does anyone have a recommended oncologist/hospital in the Carson City or Reno area?

- Besides staying inside or in the shade between 10-4, covering up, wearing sunscreen, exercising and eating healthily, does anyone have any further recommendations for lifestyle changes?

- My husband and I are going to create a full body map of my moles and spots, complete with pictures and measurements, to augment checkups to the derm/oncologiest. Is there anything else we should be doing?

- Should I find a counselor/therapist? I am still terrified, and don't want to lean on my husband too much.

- Will I be able to become pregnant if I have to go through any further treatment? Does pregnancy increase the likelihood of the cancer recurring?

- Will I ever feel normal again?

 

Thanks and much love to you all.

 

Pathology report (original biopsy):

Microscopic diagnosis: Melanoma

Microscopic description: The biopsy shows an asymmetric and irregular proliferation of single and nested atypical melanocytes at the dermal-epidermal junction. The single and occasional nested atypical melanocytes are present above the basal layer of the epidermis. The underlying papillary dermis shows mild dermal fibrosis and chronic inflammation.

Gross description: Received in formalin is a fragment of tan tissue measuring 1cm. Entirely submitted.

Comment: The melanoma is mostly in-situ with occasional atypical nests are noted in the papillary dermis with an approximate depth of 0.12-mm. These atypical nests appear connected to the overlaying epidermis in some sections. The neoplasm extends to the margins. A definitive re-excision is recommended.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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vicuk's picture
Replies 4
Last reply 5/11/2013 - 12:37pm

Helen went for scan yesterday. Got results this morning! Everything stable except some tumours in her right lung which have completely disappeared. Going to celebrate this weekend. Thank God for GSK trial. 10 months so far no problems.

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Sherron's picture
Replies 4
Last reply 5/11/2013 - 1:47am

It was wonderful....9 members of my family...all walking in Jim memory, even my little grandkids who were only 4 and 5 when Jim passed.  It was Awesomse....I was able to earn $520.00 for the cause.  I am so proud of my friends and 2 people at this site who donated.  It was such a beautiful day...Met Barbie Girl, Donna Regan, Margaret Fowler, Jackie Doss....Just an awesome day, and for such a good cause.  I also walked for all of you here!!

Take Care,

Sherron, wife to Jim FOREVER!

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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
http://www.MelanomaResources.info

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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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