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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beatricefromPARIS's picture
Replies 3
Last reply 4/16/2012 - 5:11pm

Hi all

After one month on Zelboraf, palpable tumors have greatly reduced but I find it very tiring.  Basically I stay in bed over 50% of the day, whereas before I was in much better shape before (apart from mel growing!).

The joint pain is high but not the same every day. I was wondering whether it can be impacted by nutrition. Should I reduce dairy products for example? Has anybody noticed any such correlation?

I take the 4 pills away from meals but it seems that the lab is now changing its guidance on this to "during meals". Confusing!

Also, I keep reading on the net about successful stage IV Zelboraf patients who have been taking it for many months/even years...That's nice because it means it is working ! But my first impression is that the quality of life can be low...  

Is there anyone around who took Zelboraf, became NED and could stop the medication?

 

 Beatrice Stage IV since feb 2009, 7th treatment underway.

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Kelly7's picture
Replies 7
Last reply 4/9/2012 - 2:57am

Is it possible to start with IL2, then try Yervoy, and if it doesn't work to try IL2 again?

 

I am worried that my brother's doctor has given up too quickly on IL2. He showed some positive results with it, but the doctor wants to move on to Yervoy asap. I feel because he is Braff Negative, that Yervoy might be his last option for medicine. Im I way off?

 

Any advise would be great!

Thank you-

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Gene_S's picture
Replies 1
Last reply 4/9/2012 - 2:33pm
Replies by: Anonymous
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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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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Rea's picture
Replies 5
Last reply 9/21/2015 - 8:45pm

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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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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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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Hi everyone,

 

So, my brother had 3 legions on his lung and in February he did 20 bags of IL2, it was his first dose of IL2. He just went in today to get the results of his scan and the doctor said that one legion has completely disappeared, and the other two show less intensity, however didnt shrink. There were no new  legions formed. The doctor said it was positive results, but not enough to contiue with IL2. He wants to start him on Yervoy next week. He tested negative for the braff mutation.

My questions are the following-

Is this normal protocol to move on to Yervoy after only completing one round of IL2?

Can he go from Yervoy back to IL2 if needed?

Isnt the IL2 still working to boost his immune system? Will it work better in conjunction with the Yervoy?

 

Thank you so much for any info you can give me. Im trying to stay positive and see the positive....he had 3 legions, now he has 2, but I am still so scared of what is to come.

 

Thank you!

 

Kelly

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Anonymous's picture
Anonymous
Replies 9
Last reply 4/9/2012 - 2:29pm
Replies by: Anonymous, Gene_S, washoegal

A bunch of us have teams and it is a great day for the kids.  May 12th, over 2000 folks who are there to support their family member.

www.safefromthesun.org

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ElaineLinn's picture
Replies 5
Last reply 4/9/2012 - 1:35pm

I just had surgery on a 2 1/2 cm brain tumor and done the muskadermas trial this was 3 weekago. Just found out today that while doing my ct cans for radiation that I now have more tumors. So I will be going under the Gama Knife radiation, and hopefull this takes care of these turmos. Then I will doing the Tremadol trial. I  wish I knew more about this study but right now I am running out of choices. I know that if its Gods will it will be done and I really believe that god will heal me, or he has other plans for me. I guess we will find out real soon

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Gene_S's picture
Replies 22
Last reply 5/4/2012 - 12:23pm

Before reading the link posted below, I am fully aware that there will always be some readers of this forum group that still believe that the SUN causes melanoma...

It's time to get them educated and move forward...

As we learn more about the causes of melanoma , it is becoming a fact that the LACK of sunlight is the biggest cause of melanoma.

Sure tanning beds are to blame and rightly so because they are providing the wrong type of  UV's.  What needed to be addressed here is the fact that almost all melanoma's occur on parts of the body that never receive any sun light!  Also that the increase in melanoma is due to the fact that more people never get the benefits of the sun as they are working indoors for their day job and so in my case are working night turn and sleeping during the day!

Below is a link with more up to date info, see:

http://blog.vitamindcouncil.org/2012/03/31/does-UV-exposure-decrease-risk-of-melanoma/

PS. In my opinion every person reading this thread should be tested for the 25-hydroxy vitamin D-3 test.

However, don't wait until it is to late thinking that your oncologist will recommend this test for you.

Best wishes,

Gene

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

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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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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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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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