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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debandmike's picture
Replies 5
Last reply 7/17/2011 - 9:50am

My husband has just returned home from his second series of IL-2. Compared to the first series of treatment he is doing great. I hope that means the IL-2 is working even more. We will enjoy this week with him home and then he will head back to the hospital for the second series of Round 2. Aiming for NED!

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triciad's picture
Replies 13
Last reply 7/17/2011 - 7:37am

Hi Everyone,

The responses from my last post has my curiosity flowing.  My doctor spends around 2-3 minutes with me each visit.  I am stage 3B.  I always thought that this was normal, but from your responses, it looks like I am wrong.

I'm wondering, just how long does your doctor spend with you during a visit/checkup?

I hope many of you will participate in this little survey...could turn out very interesting!

Thanks!

Tricia

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ccbreeding's picture
Replies 4
Last reply 7/17/2011 - 1:04am

I was diagnosed with stage III almost four years ago.  At the time I was 34 years old and had three young children and a loving husband.  And I was scared to death!  I found this site and fell in love with it:)  actually, I was quite obsessed reading it...there were always posts that encouraged me, but there were also ones that scared me.  As time went by I had "friends" that lost their battle to the beast.  All this to say, I hope I can encourage anyone that may be newly diagnosed.  I have had four wonderful years of being NED.  My lymphedema in my leg is there but never too bad and doesn't hinder me.  I am able to worry a little less about the beast returning.  I have run a marathon (my first and probably last), homeschooled my kids, moved to a ranch and built a house:)  Life is good for today... And God is great:)  no matter what tomorrow brings.  Enjoy the moment...it's really all we have guaranteed and don't worry about tomorrow...I feel like when I worry and fret I am letting melanoma win.  

Hope this helps someone:)

Courtney Stage III and still NED

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karpathian's picture
Replies 5
Last reply 7/17/2011 - 1:00am

Hello all,

I'm new to this forum but had a question that I hope you can shed some light on.  My sister had a melanoma excised a couple of weeks ago they said that they would let her know if they got it all but it's been 10 days so she called and they said that they "sent the results to surgery and would call tomorrow."  When she asked them what it means to send results to surgery they said "it means nothing until you talk to the doctor tomorrow."

Does anyone know what the procedure is?

Thank you in advance for any clarification.

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DejaBlue's picture
Replies 1
Last reply 7/16/2011 - 10:46pm
Replies by: washoegal

Hey,

 

I'm aware there are dozens upon dozens of topics regarding "IS THIS MELENOMA??" and such, I've taken that into consideration. I've done a lot of research online, and I've found mixed answers. Nothing I was looking for specifically.

So this is my concern:

 

I'm 18 years old, and have an asymetrical slightly 2 colored mole on my chest. It's on the rights sight, a little lower than my right nipple, but towards the middle of my chest. I went to my derm about 2 years ago, and he removed 3 of them (one on my leg, 2 on my back), tested them, and they showed no signs of melenoma. However; he left the one on the chest by accident. I have shedualed an appointment for it's removal.

I very worried about it being missed, but:

The mole has been unchanged for almost 4 to 5 years. 

It hasn't changed in size, shape, or color. 

Clothing has just recently started to irritate it just slightly (Or I think I've just been thinking about it since I shedualed the appointment, so I triggered a mind game with my mole)

The mole is very light in color, almost my skin, expect for one part which is a little dark. The overall size is slightly smaller than a pencil eraser.

 

As I said, I know it's the internet and you guys can't do lab tests on me, but I've been paranoid of every kind of disease since I was very young, and I set up a derm appointment for very soon.

 

Since it's unchanged for over 4 years, is that a good sign? 

 

Thanks you for your time.

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Anonymous's picture
Anonymous
Replies 3
Last reply 7/16/2011 - 10:45pm
Replies by: MichaelFL, DejaBlue, Janner

Hey,

 

I'm aware there are dozens upon dozens of topics regarding "IS THIS MELENOMA??" and such, I've taken that into consideration. I've done a lot of research online, and I've found mixed answers. Nothing I was looking for specifically.

So this is my concern:

 

I'm 18 years old, and have an asymetrical slightly 2 colored mole on my chest. It's on the rights sight, a little lower than my right nipple, but towards the middle of my chest. I went to my derm about 2 years ago, and he removed 3 of them (one on my leg, 2 on my back), tested them, and they showed no signs of melenoma. However; he left the one on the chest by accident. I have shedualed an appointment for it's removal.

I very worried about it being missed, but:

The mole has been unchanged for almost 4 to 5 years. 

It hasn't changed in size, shape, or color. 

Clothing has just recently started to irritate it just slightly (Or I think I've just been thinking about it since I shedualed the appointment, so I triggered a mind game with my mole)

The mole is very light in color, almost my skin, expect for one part which is a little dark. The overall size is slightly smaller than a pencil eraser.

 

As I said, I know it's the internet and you guys can't do lab tests on me, but I've been paranoid of every kind of disease since I was very young, and I set up a derm appointment for very soon.

 

Since it's unchanged for over 4 years, is that a good sign? 

 

Thanks you for your time.

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ValinMtl's picture
Replies 6
Last reply 7/16/2011 - 8:53pm
Replies by: wgalinat, Terra, ValinMtl, Bruce in NH, Anonymous

Well, back from NIH -NCI in  Maryland.  They removed 2 masses in left groin (2 lymph nodes).  Now into lab to produce the white cells (TIL) that will be needed for trial.  Will fly back down for meeting to discuss which arm of trial I will be on.  Would prefer total body radiation arm but other arm is good as well. Thank goodness for Warren G.'s timely report on being healthy after 5 years! and for his kind assistance. I was so down about a month ago with not any other 'good' plan available in Quebec.  NIH happened to start up the same trial again in March and I was accepted!! 

Can't say enough about the treatment and wonderful staff at NIH.  Warren, you were right, I'm in good hands!

Val - stage IV (failed interferon, many surgeries, failed temodar, partial responder to ipilimumab but eventually removed from trial)    

http://www.clinicaltrials.gov/ct2/show/NCT01319565?term=11-c-0123&rank=1

Live Laugh Love Nothing is worth more than this day!

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Lauri England's picture
Replies 4
Last reply 7/16/2011 - 6:02pm

At my last Onc appt I was informed I will have a CT Scan in October, right after my year of Interferon is done.  I have not had any scans since last August 2010 and they were all clear.  I had an MRI and CT scan at that time.  What is a PET Scan and is it better then CT scan?  Do they use different scans for different parts of the body?  To me they should check my entire body being that I havent had anyother scans in a year.  Looking for input from others.  God Bless!!

Don't sweat the small stuff. There are bigger fish to fry!

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Karin L's picture
Replies 3
Last reply 7/16/2011 - 3:50am
Replies by: Kim K, ChrisB, Rocco

I finished round 4 of IL 2 treatment 4 weeks ago and within the last few days have been losing much hair.  I realize this is a less common side affect of treatment, but I wonder if anyone knows if it certain to be complete hair loss or extreme thinning? 

Thank you for any and all replies in advance.

Karin

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Rebecca and Bob's picture
Replies 8
Last reply 7/15/2011 - 8:25pm

 

Yesterday was a stressful day waiting at NIH, but my husband got all clear on the PET and CTSCAN. This will be two years since his last surgery of small intestine. They have finally moved us from 3 month visits to 4 month visits.

We celebrate our 10 year anniversary this weekend and 2 year NED hoping for many more!!

Thanks everyone this site has meant a lot over the past 4 years.

 

Rebecca

Believe

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boot2aboot's picture
Replies 3
Last reply 7/15/2011 - 4:31pm
Replies by: MichaelFL, ValinMtl, Janner

http://www.wsoctv.com/health/28562414/detail.html

 

 

Rose Bengal For Melanoma
Melanoma

 

Melanoma is a form of skin cancer that develops in the pigmenting skin cells, called melanocytes. The Skin Cancer Foundation estimates that last year, about 120,000 new cases of melanoma would be diagnosed in the U.S. Roughly 68,130 cases would be invasive melanoma. It’s the most common form of cancer among those 25 to 29.

 

Although melanoma accounts for only about five percent of all skin cancers, it’s the cause of about 75 percent of skin cancer deaths. Last year, 8,700 people in the U.S. were expected to die from melanoma. The reason for the poor survival rate is that many cases are diagnosed after the cancer has invaded to deep tissues and/or spread to distant areas of the body. For melanoma that has spread regionally, five year survival rates are only about 62 percent. Once the cancer reaches distant areas of the body, five-year survival rates drop to about 15 percent.

 

Treating the Cancer

 

The mainstay of treatment for melanoma is surgical removal of the tumor. Doctors may try to remove the tumor by taking one layer of tissue at a time, checking each slice to see if any cancer cells remain. However, even seemingly small melanomas can grow deeply and leave behind a large hole once they are removed. Depending on the location and spread of the cancer, surgeons may remove the nearby lymph nodes as well.

 

If the melanoma spreads, it can be very difficult to treat. It’s impossible to detect and remove all distant melanoma cells. Chemotherapy (anti-cancer medications) may be tried. Other options may include immunotherapy or radiation therapy.

 

Rose Bengal for Advanced Disease

 

Sanjiv Agarwala, M.D., Oncologist at St. Luke’s Hospital in Bethlehem, PA says treatment for stage 3 melanoma is very limited. Surgery doesn’t often work because the cancer comes back. Even though the cancer is still somewhat localized, radiation therapy has limited effectiveness. Thus, patients don’t really have any good treatment options.

 

Agarwala and a few colleagues across the world are testing a new treatment for advanced melanoma, called PV-10 (Rose Bengal). PV-10 is a rose-colored stain used more than 100 years ago to dye wool. Doctors found the stain could be used in diagnostic tests to detect eye abrasions and to assess liver function. Researchers also discovered the stain may be taken up by cancer cells. Inside a cancer cell, the drug accumulates in specialized structures, called lysosomes, often causing the cell to die. Surrounding healthy cells are unaffected because they don’t take up the PV-10.

 

PV-10 is injected directly into a melanoma tumor. Agarwala says that the injection can be very painful for some people, so an anesthetic agent is given prior to the treatment. Following the injection, the tumor turns red. Agarwala explains that response is simply the result of the tumor cells taking up the red stain and the color has no direct effect on the treatment. Over the next few days, as the cancer cells die, the tumor dries up, scabs and falls off. It can take two to three weeks to see the final effects of the treatment.

 

Not all melanomas respond to PV-10. In a phase II study, researchers found 60 percent of participants had at least a 30 percent shrinkage of their tumor. However, researchers saw another, very surprising effect of the treatment. About one-third of patients who responded to the injection also had shrinkage of nearby and distant melanoma tumors that were NOT injected. The reason for the so-called "bystander effect" isn’t known. However, Agarwala theorizes that when the target tumor dies, the cancer cells release proteins that the immune system learns to recognize, improving the body’s ability to attack other melanomas.

 

Agarwala says the PV-10 is best for patients who have advanced, but localized disease with external tumors. It would not be used for those with a significant number of internal tumors.

 

Researchers are designing a phase III trial to further study the effects and benefits of PV-10 for melanoma. Though the drug is not yet approved in the U.S., it is available to melanoma patients who have no other treatment options through a compassionate use program. For more information go to clinicaltrials.gov, and then type the trial identification number in the search box: NCT01260779

 

Research compiled and edited by Barbara J. Fister

 

AUDIENCE INQUIRY

 

For information about PV-10’s expanded access for compassionate use, go to clinicaltrials.gov, and then type the trial identification number in the search box: NCT01260779.

 

For general information on PV-10, go to the company’s website at pvct.com

 

For information about melanoma:

 

American Academy of Dermatology, http://www.aad.org

 

American Cancer Society, http://www.cancer.org

 

National Cancer Institute, http://www.cancer.gov

 

Skin Cancer Foundation, http://www.aad.org/for-the-public/home

don't back up, don't back down

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scotito's picture
Replies 2
Last reply 7/15/2011 - 3:37pm
Replies by: nicoli, boot2aboot

brand new to vemurafenib - two weeks in - not so bad - but sounds like an idiotic question - but what exactly does it do to you that saps your energy?  and does anyone have a reco other than caffeine? 

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Rendergirl's picture
Replies 2
Last reply 7/15/2011 - 2:35pm

Probably a silly quesstion, but are there any special concerns if we get an ingrown fingernail on an arm with previous lymph node removals?

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triciad's picture
Replies 8
Last reply 7/15/2011 - 7:14am

Hi Everyone,

Last Saturday, I noticed a small bump close to where my original tumor was found.  I went to the dermatologist on Monday, and she tried to do a punch biopsy, but it was too deep.  She immediately paged my oncologist and surgeon to set up appoinments and talk with them.

So, I met with my oncologist today for our regular 3 minute visit.  He walked into the room and said, "I know all about it.  It's an in-transit.  We're scheduling you for a brain MRI and a pet/ct.  If all are negative, then meet with the surgeon on Monday.  If something else shows up...come back to me.  Don't worry, I'm going to make sure you are fine."   And that was it.

Can anyone help me out here?  What is an in-transit?  What does it do to my current staging of 3B?  I'm one week shy of being 2 years NED.  This is the second time I'll be getting a cancer diagnosis for my birthday on Tuesday.  Shouldn't I be getting diamonds or a fabulous vacations somewhere?

If anyone can explain these in-transits to me I will be forever grateful!

Tricia

 

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