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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Lisa13's picture
Replies 9
Last reply 7/17/2011 - 7:38pm

Last Friday was my second dacarbazine treatment.  I'm tolerating it quite well and havn't experienced some of the mild symptoms I had during my first treatment.  In the last 2-3 days, I've been experiencing horrible heartburn and acid reflux. I've always had these problems in the past 10 years, but they were non existant until this second round on chemo. Has anyone experienced these stomach issues during chemo treatment?  I'm taking over the counter Zantac after approval from my oncologist, but it's short lived so my discomfort returns. It's so bad, I have to sleep sitting up so my stomach contents don't work their way into my throat. My appetite is great and I have no nausea.

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Anonymous's picture
Anonymous
Replies 4
Last reply 7/18/2011 - 3:00pm

My company may be asking/forcing/requesting (depending on how you look at it) to relocate from Boston to Dallas.  I've received life saving care in Boston so would like same in Dallas.  Is there a melanoma center in Dallas that anyone has personal experience with?  Also, anyone aware of how far a drive it would be to MD Anderson from the Dallas/Fort Worth area?  Thanks in advance.

signed, Nervous in New England

Luke 1:37

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kim2712's picture
Replies 14
Last reply 7/17/2011 - 11:01am

My 25 year old son passed on May 22nd after his melanoma returning on March 7th. This is by far the most painful thing I have ever felt. A mother should never have to bury her child. I can't get past the images of him in the hospital, and the image of him taking his last breath...it's horrible. I can't focus, sleep, enjoy anything...so painful.

I pray that someday there will be a cure for this dreadful, viscious disease. I am going to organize a walk benefit in May in his honor to raise money for research...I will do this every year as long as I live, and Erik's brother's will continue it after that.

Praying for you all that you stomp this beast out of your bodies!

Peace and Blessings,

Kim

Mother to Erik 6/11/1985-5/22/2011

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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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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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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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ChicagoTom's picture
Replies 8
Last reply 7/17/2011 - 8:45pm

Hey everybody! I was diagnosed as a stage 3 last week. Waiting on my PET scan results. I had a large melanoma removed from the back of my leg just below the knee. I now have a hole the size of a hockey puck in that area. I also have an enlarged lymph node in my groin, but it's also infected, so they have to wait a bit to do a biopsy there. I had a CAT scan of most of my body while I was an inpatient, they didn't see anything of concern. I also had an MRI of my head, also nothing there(hehehe). So now I am just playing the waiting game that so many of you have done. Next week I have appointments with plastic surgery, oncology, and surgical oncology.

I let my melanoma fester for WAY too long. It became an open wound, got infected(Staph aureus). What made me finally seek treatment was after the second of two camping trips in June, there were MAGGOTS living in it! I sat down to go to the bathroom and noticed something white hanging out of my melanoma. At first I thought it was puss, so I wiped it with some alcohol and it moved! Then I got some tweezers and contorted myself so I could get in there. I pulled out 6 maggots, woke up my wife and went to Northwestern Memorial in Chicago. So now I am starting the process of putting myself back together. Not focusing on why I didn't seek treatment earlier. I have grown tired of doctors, nurses, friends, and family asking me why I didn't tell someone earlier, I want to focus on the future and positive things, not the past and negativity.

So hello, nice to meet you fellow melanoma'ers. I'm ready to join you in the battle against melanoma. I'll be receiving treatment at Northwestern and feel very confident with the medical staff there, they were fabulous during my 5 day stay as an inpatient.

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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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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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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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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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Karin L's picture
Replies 6
Last reply 7/17/2011 - 11:55am

I apologize in advance for my ignorance .  A brief history.  Back in '06 I had an orange sized area from my left thigh surgically removed that was melanoma (cannot remember the breslow? Clarks...etc.).  A SNB was done that came back clear.  CT Scans yearly came back clean (later found out only the abdomen and chest were being scanned) In Nov. of  '10 I felt a lump in my left groin area that turned out to be several nodes of mel as well as metastis to the liver and a "sprinkling" in the lungs.  My oncologist at the time really messed up my head by telling me I had "about a year to live" and "there was nothing more he could do".   He gave me the name of a melanoma specialist to see which has been my lifeline for the last 8mos.  I had left his office with no hope at the time and protected myself mentally (my minds way of doing so) by not willing to hope too much.  Makes little sense, but it is what it is.  I was willing to fight though. 

Fast forward.  Was accepted into the OncoVex clinical trial.  Tumors in groin were shrinking and Dr. was very hopeful the immune system was taking care of the rest.  First CT at 3 mos. showed otherwise.  Many new tumors in the liver were found.  Dr. wanted to do high dose IL2 asap.  Began in early Apr. and ended stay 4 approx. 4 weeks ago.  Went for CT last Friday and here is where my question begins.  I know what the Dr. said and I feel absolutely blessed, but I am left with questions so I come to you since they sound so ignorant when I think them. 

All tumors in the liver are gone except one small area (the original area).  No more treatment at this time and Dr. is very confident that area will be gone by next scan (2mos).  He also said (and told me he rarely says this to his patients) that he believes by next scan I will be in "complete remission".  

I can still feel the tumor in my groin (as it was very large) although it does feel a tad smaller than before.  Can you still have tumors and they are not active?  Are they dead?  Do they disappear in time?  If mel returns, does it return to those original areas affected first or it doesn't matter? 

I am having such a hard time wrapping my head around all this. 

Karin

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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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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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Bruce in NH's picture
Replies 15
Last reply 7/21/2011 - 8:36am

Just thought I would post my latest setback in trying to enter a T-cell targeted therapy clinical trial at NIH. NIH requested CT scans and brain MRI last week. After over 10 years of brain-free mets, I got the surprise of my life. Opinion of radiologist: " Multiple bilateral cerebral hemispheric metastases." Initial count is greater than 10, which exceeds the NIH acceptance criteria by at least 7 (3 or fewer mets with none greater than 1cm. in size). The report is preliminary so there is little to no detail on size but mets appear scattered from front to back primarily on the right side. I have had no headaches or brain fog to alert me to a problem, which makes the diagnosis that much more frustrating.

So I start a new journey into the unknown. I've done some research on brain mets but would appreciate comments from those of you familiar with multiple brain mets, specifically what questions I should ask the radiation oncologist when we meet next week for a consultation. It looks to me like my only option is Whole Brain Radiotherapy (WBRT). If you or your spouse/partner/family have had experience with this treatment, would like to know what to expect in the way of side effects. I'm sure they vary from patient to patient but for now I have to start somewhere. Thanks for sharing your experiences in advance.

Bruce in New Hampshire

Life is a journey, not a destination. Enjoy every minute of it with family, friends, and with others who may be ill and fighting melanoma.

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