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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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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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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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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