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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KevinM's picture
Replies 3
Last reply 4/7/2012 - 12:50pm
Replies by: Wilson, michelleg, Linny

I was diagnosed in March of 2006 with stage 3 (golf ball sized axillary lymph node) with an unknown primary. I completed 3 rounds of Bio-Chemo at Beth Israel in Boston and remain NED. I have no idea if it was the treatment or not but I am thankful that I chose to be aggressive in my fight.

As many of you know, I love to run and have always used it as a means to judge my health and also to celebrate it. So in just over a week I will be running The Boston Marathon for the 12th time. It will also be my 20th marathon. For the past several years I 'I've run with the Melanoma Foundation of New England Team. Many team members are either survivors, caregivers or have family members that have been impacted by melanoma. It is great to share a determination to spread the message of prevention and early detection.

This year I am running in memory of Jerry Sullivan (Jerry from Cape Cod). I met Jerry at a MFNE event and have been inspired by him since. We traded many emails during the past few months. He especially liked it when I toasted him with a cold Sam Adams after the Hyannis 1/2 Marathon. I plan on doing the same after Boston!

I've often said that melanoma might kill me but will never beat me.....cheers to all that feel the same! 

Carpe Diem!
Kevin

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Jeff's Mom's picture
Replies 5
Last reply 4/5/2012 - 10:26pm

It's been a tough two weeks - Jeff finished his final IL2 treatment on March 15th (did 19 bags total - it was brutal, but he was willing to endure anything to get a positive response).  We were waiting and waiting (scan was scheduled for April 11th) to see some improvement in his overall condition, but he just seemed to be spiraling downward.  He was so exhausted, nauseated and pale - it was getting scary.  He finally went to the hospital on Thursday  (the 29th) because he had a fever and we were worried about hepatitis (he looked jaundiced).  Doc didn't like the way he looked, so Jeff had an early scan.  Tumor progression in the liver - serious and fast progression...

He is now on Zelboraf.  He seems better, but he's been on it for just a few days (2 to be exact).  Can it work that fast?  

I am worried about what to do next.  What will we do if the Zelboraf stops working?  How much time will we have to get him into another treatment?  What are our options - ippi and anti-PD1 might take too long to work for him - his cancer is aggressive.  We are trying to cover our bases - 2nd opinion scheduled at Moffit (hoping to find out more about the XL888 study) and have contacted UCLA about Dr. Lo's DNA sequencing work on Zelboraf resistance.  

This site has been so important to us - we read it everyday and are inspired by so many positive stories.  Thanks in advance for any advice.  

Jeff's Mom 

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Gene_S's picture
Replies 1
Last reply 4/5/2012 - 8:54pm
Replies by: Webbie73
 

Mohs Most Cost-Effective Treatment for Skin Cancer

Yael Waknine

 April 3, 2012 — Mohs micrographic surgery (MMS) represents the most cost-effective treatment for skin cancer, according to an article published online March 22 and in the April print issue of Dermatologic Surgery.

MMS is a method of excising a tumor and the surrounding skin with the help of a microscope, allowing the dermatologic surgeon to trace the outline of a cancerous growth, layer by layer, with exceptional accuracy. The method is associated with significant tissue sparing, resulting in smaller simpler repairs or an option to let the wound heal by secondary intention.

Investigators led by Larisa Ravitskiy, MD, from the Ohio Skin Cancer Institute at Ohio State University in Columbus, performed a cost analysis with respect to 406 tumors that were cleared with a mean of 1.6 stages (range, 1 - 8 stages). The expenses related to subsequent re-excision and reconstruction and tumor recurrence were added to the final estimate.

Results showed that MMS was the least expensive of surgical options ($805/tumor) compared with standard surgical excision (SSE) with permanent margins ($1026), SSE with frozen margins ($1200), and SSE performed in an ambulatory surgery center ($2507).

"The common misperception of MMS as an expensive option has its roots in the poorly understood bundled reimbursement of the procedure, which includes costs of surgical excision, histology preparation, and pathology," the authors write, noting the increased use of MMS in an aging population with a greater incidence of skin cancer.

In fact, the cost of MMS when adjusted for inflation (including initial exam, biopsy, and 5-year follow-up) was lower in 2009 than in 1998 ($1376 vs $1635).

The authors suggest that clinicians should be aware that MMS offers low recurrence rates; smaller defects, resulting in simpler, less-costly repairs; and overall cost efficacy.

"Once the effect of MMS on economic savings and cure rates is recognized, restrictions on the use of MMS will be lifted. The cost and value inherent in MMS rightfully prioritize it as the treatment of choice for cutaneous malignancies," the authors conclude.

The authors have disclosed no relevant financial relationships.

 

Authors and Disclosures

Journalist
Yael Waknine

Yael Waknine is a freelance writer for Medscape.

Yael Waknine has disclosed no relevant financial relationships.

Dermatol Surg. 2012;38:585-594. Abstract

Medscape Medical News © 2012 WebMD, LLC
Send comments and news tips to news@medscape.net.

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

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Lowie's picture
Replies 1
Last reply 4/5/2012 - 8:47pm
Replies by: Janner

My daughter had a small spot removed from her back, it was originally light brown with a slightly raised dark brown center, unusual shape. They only took off the top layer (I guess), not like a deep incision. When the scab first fell off the skin underneath was a pale pink throughout. Now a similar dark spot to what she had before is showing through the spot. To the touch it feel perfectly smooth, not rough like a scab would.

I have a call in to the doctor, but could this really be the same thing growing back?

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H555's picture
Replies 4
Last reply 4/5/2012 - 7:53pm

My primary was in 1995, after 10 years of dermatologist screenings (and no recurrences) i never gave it another thought. Last spring i found a swollen lymph node near my groin and my PC had the good foresight to have scans run. June 30th, same day I retired, i had 17 lymph nodes removed from my right inguinal area and upper thigh on my right leg. only one was malignant but there was extension outside the node. i was tested for the BRAF mutation and i haveit. I did radiation in september and then 10 Interferon IV treatments in November and my oncologist and i both agreed after 3 weeks it was taking too much of a toll on my body, by the 10th treatment i couldn't force more than a couple of glasses of water down a day.

 

about two weeks ago I developed a dry cough, after a week of that my PC (again) sent me right out for a chest xray and a wet read, came back as multiple masses/nodules in my lungs. saw my medical oncologist two days later and he set me up with Zelboraf, then had my radiation oncologists (who's done IGRT for prostate cancer for me and high dose radation on the area where my lymph nodes were removed last september). The top lobe of my left lung is partially collapsed and i have one node that's about 3 centimeters blocking an airway. I'm starting radiation today for that node to improve my breathing. I haven't gotten a call from the speciality pharamacy yet, yesterday my medical oncologist said he'd "lean on them" - i'm guessing teh hold up is because I have double coverage (thank God i kept my health insureance going after i retired).

 

I'll post more as this plays out. I'm optimistic about the Zelboraf and know there are several other drugs available if my cancer becomes resistant. sure not how i envisioned retirement tho. if you pray, i'd sure be grateful for prayers. this has stunned my whole family - which has since day one declared we're all in this together. I have a great support system, am in otherwise good health, have lots to look forward to, including a trip to Kenya this summer to visit our youngest son who's in the Peace Corps in Kenya. thank you.

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Hi everyone

My husband will begin Yervoy next week.  I want to stay ahead of the game and make sure he's getting good nutrition during the treatment.  Any suggestions from those that have been through the treatment and what worked best for you?  Also how did you handle side effects?

Thanks.

Rea 

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Replies by: patobs01

Hi!

My name is Jayme Dodd and I work for 20/20 Research, a national marketing research firm, and we are currently conducting a research study in conjunction with Quintiles Market Intelligence, a health care research firm.  We are looking to get in touch with patients diagnosed with melanoma.    I wanted to see if you would be willing to post this study information in your web site, or send an email to your members or subscribers.  If so, here is the study information below and we appreciate your help in this important research initiative. 

 

We would like to ask you to participate in a research study about your experiences with treatment.  We will be asking you for specific examples, but avoiding any details that would make it possible to identify you.  Unlike many other research interviews, this is not a survey.  This is strictly a research study; no sales of any kind will be involved and all responses will be held in strict confidence.

 

We are offering a $50 referral to anyone who refers a qualified participant for this study, so please forward this to anyone that you think may qualify.  If you have someone to refer, you can have them call us directly at 615-724-6076, or email jaymed@2020research.com.  If you are a referral, please be sure to notify the recruiter who referred you.

 

Those who qualify will be asked to participate in a 45-minute, phone interview

 

The interviews are being schedule the week of April 16th at various times each day, and participants will receive a $100 Prepaid Visa as a thank you for their complete participation.

 

If you are interested in this study, please call us at 615-724-6076 (Suzanne) to go through a short screening questionnaire.  If you receive voicemail, please leave your name, telephone number, and the best time to reach you by phone.

 

If you prefer to go through a short online pre-screener, please visit: https://www.surveygizmo.com/s3/887590/

 

For more information about 20/20 Research, please visit www.2020research.com

Hi!

My name is Jayme Dodd and I work for 20/20 Research, a national marketing research firm, and we are currently conducting a research study in conjunction with Quintiles Market Intelligence, a health care research firm.  We are looking to get in touch with patients diagnosed with melanoma.    I wanted to see if you would be willing to post this study information in your web site, or send an email to your members or subscribers.  If so, here is the study information below and we appreciate your help in this important research initiative. 

 

We would like to ask you to participate in a research study about your experiences with treatment.  We will be asking you for specific examples, but avoiding any details that would make it possible to identify you.  Unlike many other research interviews, this is not a survey.  This is strictly a research study; no sales of any kind will be involved and all responses will be held in strict confidence.

 

We are offering a $50 referral to anyone who refers a qualified participant for this study, so please forward this to anyone that you think may qualify.  If you have someone to refer, you can have them call us directly at 615-724-6076, or email jaymed@2020research.com.  If you are a referral, please be sure to notify the recruiter who referred you.

 

Those who qualify will be asked to participate in a 45-minute, phone interview

 

The interviews are being schedule the week of April 16th at various times each day, and participants will receive a $100 Prepaid Visa as a thank you for their complete participation.

 

If you are interested in this study, please call us at 615-724-6076 (Suzanne) to go through a short screening questionnaire.  If you receive voicemail, please leave your name, telephone number, and the best time to reach you by phone.

 

If you prefer to go through a short online pre-screener, please visit: https://www.surveygizmo.com/s3/887590/

 

For more information about 20/20 Research, please visit www.2020research.com

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markd here and i just wanted to say how much this board and you people have helped me.thanks and i hope to hear from other stage 2a patients.god bless.

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bikerwife's picture
Replies 4
Last reply 4/4/2012 - 9:52pm

We finished ippi march 26. Went in for a follow up from gamma knife. They treated 5 small lesions on brain they said scan in 6 weeks and it should show shrinkeage. They also wanted to look at the growths one under arn is size of a quarter. Thought that was it went home. Got a call today and they have consulted with our dr and they want to do radiation with gamma under arm. Said a new study shows radiation boost the tumors and makes them regress faster. I'm so confused at first they said 10 and know only 5. I'm so confused but lynn says we will just pray about it. Whatever God brings us to he will take us through. God bless each of you and thanks for listening.

What God leads u to he will. Lead you through

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MeNDave's picture
Replies 3
Last reply 4/4/2012 - 7:56pm
Replies by: MeNDave, Anonymous

Dave decided today to wait to start IPI - and his oncologist agreed.  Khushalani believes that the new mets, although numerous, are tiny, and that he has time to see if he can get into a clinical trial.  After speaking with his mel cohorts, he agreed the anti-pd1/pdl-1s were his best bet.  Our first stop is with Dr. Ma at Roswell, who is doing the MDX-1105 trial.  This also happened to be my brother Mike's doctor when he was still with us.  I liked the way he treated my brother (who was borderline mentally handicapped), who had absolutely no hope, but tried everything he could, knowing Mike wanted to keep trying.  Then on Thursday of next week we travel to University of Pitt's Hillman Cancer Center to see Dr. Tahrini, to see if they have anything to offer him.  Either way, we walked out of this appointment with some hope - and that can go along way.

I know how the studies on the 1106 are going, but is anybody doing the 1105?

Please keep your fingers crossed -

Maria

Don't ever, EVER, give up!

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vladimir3d's picture
Replies 2
Last reply 4/4/2012 - 7:25pm
Replies by: Janner, vladimir3d

I just had a full skin check done last month, everything came out looking well.  Today i noticed on my left shoulder something that i can only describe a pimple or clogged sebaceous gland next to a mole.  Mole itself is even in color but a bit distorted due to obvious pimple like pathology in the area.  Should i have it checked out asap or apply neosporin and wait a few days?

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MONDAY, April 2 (HealthDay News) -- Cancer patients who receive a combination of low-dose interleukin-2 and retinoic acid after conventional therapy seem to live longer than those who don't get the combination.

These new study findings, slated for presentation this week at the annual meeting of the American Association for Cancer Research in Chicago, were seen across individuals with many different forms of advanced malignancies, including breast, lung and colon cancers.

Retinoic acid is derived from vitamin A. Interleukin-2, a compound that fortifies the immune system, is approved at high doses to treat "metastatic" melanoma and kidney cancer. Metastatic means that a cancer has spread.

The study showed that "these biological compounds may work at low doses. Bigger doses are not always better," said lead author Dr. Francesco Recchia, director of the oncology department at Civilian Hospital in Avezzano, Italy.

Recchia stumbled upon the possibility of using low-dose interleukin-2 (IL-2) when he switched a patient with metastatic melanoma who didn't tolerate high doses to a lower dose, and the patient had an extended response to the therapy.

This study involved 500 patients who had already responded well to chemotherapy. They had a variety of cancers, including ovarian, lung, colon, stomach, kidney, melanoma, breast and pancreatic.

Participants gave themselves the interleukin-retinoic acid duo five days a week for three weeks, then took a break of one week followed by another three weeks -- for five years or until the cancer came back.

Individuals who pursued the maintenance therapy did live longer, the researchers found. About 43 percent of breast cancer patients were alive after five years, versus an expected average survival of about only one-quarter of patients.

Similarly, about 26 percent of lung cancer patients were alive after five years versus about 4 percent expected, nearly 44 percent of those with colorectal cancer were alive as compared with about 12 percent in an average population, and 23 percent of kidney cancer patients were alive versus 11 percent expected.

After 15 years, about 33 percent of patients were alive without having had a recurrence and 37 percent overall were alive, the investigators reported.

"This regimen works by increasing immune response," Recchia explained.

In this case, immune response consisted of an increase in the number of natural killer cells, which are primed to attack tumors, and a decrease in vascular endothelial growth factor, which would normally prompt a tumor to spread.

There were no serious side effects, Recchia said, and the therapy's cost is about $300 a week.

While IL-2 activates the immune system, retinoic acid is an angiogenic agent, meaning it reduces blood supply to tumors, explained Dr. Michael Atkins, deputy director of the Georgetown Lombardi Comprehensive Cancer Center in Washington, D.C. He was not involved with the study.

The results are "provocative," Atkins said, but one problem is that all the patients had already benefited from chemotherapy so it's unclear if they would have done well without the immune therapy, he added.

A bigger trial of patients randomly assigned to receive treatment is now starting in Siena, Italy, in breast cancer patients, Recchia said.

Because this study was presented at a medical meeting, the data and conclusions should be viewed as preliminary until published in a peer-reviewed journal.

More information

For more on interleukin-2 and other biological therapies, visit the U.S. National Cancer Institute.

SOURCES: Francesco Recchia M.D., director, oncology department, Civilian Hospital, Avezzano, Italy; Michael Atkins, M.D., deputy director, Georgetown Lombardi Comprehensive Cancer Center, Washington, D.C.; presentation, American Association for Cancer Research annual meeting, March 31-April 4, 2012, Chicago

Copyright © 2012 HealthDay. All rights reserved.

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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Lisa - Aust's picture
Replies 1
Last reply 4/4/2012 - 4:23pm
Replies by: Jeff's Mom

Hi Everyone,

My partner Craig is currently on the BRAF trial and we found out today that after 60 weeks he is still responding and his scans are clear. We feel so lucky that he has had such good success. I know there are a few out there who have recently started BRAF so I just wanted to share the news.

All the best to everyone out there

Lisa xx

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Anonymous's picture
Replies 5
Last reply 4/4/2012 - 12:08pm
Replies by: Anonymous, Janner

I have a friend who is a breast cancer survivor.  She said it was very important not to cut through the tumor, or it can spread the cells.  is this the same with an early stage melanoma?  It seems it would spread it, wouldn't it?  Online I have read numerous times where melanoma has margins involved or the tumor was only partially biopsied.  I worry that someday they may say this does indeed spread the tumor. 

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jrjrjr's picture
Replies 1
Last reply 4/3/2012 - 9:16pm
Replies by: Janner

Hello.

I have had numerous dysplastic nevi removed.

I am trying to determine if I have FAMM or dysplastic nevi syndrome.

Does anyone have FAMM or dysplastic nevi syndrome?
Can you share how you were recognized with the syndrome?
Did your dermatologist recognize it?  Did your oncologist?   Did your genetic counselor?
What is your understanding of the criteria for FAMM or dysplastic nevi syndrome?
At what age where you diagnosed?

Thank you.

jrjrjr

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