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.

Can Staging be done from initial biopsy???

My name is Dave, I am very healthy at 36, and I was diagnosed with melanoma yesterday after having what I thought was an innocent large mole removed.  The dr. said it was stage 4, but after reading I am hoping he meant thickness 4.  He said there were 5 stages, but he wasn't too confident.  I am going to meet with a surgeon Thursday and sounds like they want to take a larger area around the mole and test lymph nodes.

MDA Trials-what do I need to know for consult?

I've posted a few questions a wk or so ago.  We finally got the insurance to ok a consult, what do I need to ask/demand for treatment at MD Andersson?  My ftr has brain, lung, spleen, and liver mets.  He finished his WBRT on Monday.  I did ask his current oncologist to test for BRAF and he is positive, but I do not believe any other testing has occurred.   Thanks-I want to make the most of this visit!!!  Get him on a trial and get some quality of life.

MacVac Trial, 7th shot

For those following my little clinical trial, I figure it's time for an update. I had my 7th shot on Wednesday. They rotate these shots between my two thighs and my right arm, my left arm is a 'no-stick' arm. So far, my most consistant side effect to my vaccine has been a headache, which I did NOT have this time. My site reactions have consistantly gotten worse with each shot, and the reaction on my arm this time was pretty fast and continued to get worse till about this morning, but is much better tonight.

What can expect from the surgical removal?

I posted earlier this week that I had not got my pathology reports back yet from the doctor and was afraid of the unknown.  Well I got the phone call today at work that I do have Melanoma.  They want to schedule for me to have surgery to remove the area on my back, and to have tests done to assure that it hasn't spread.  I am going to go to a different doctor, I called them today and they said once they recieve the pathology from my current doctor then they will call me next week to schedule my surgery.  I still don't know the depth or anything, my doctors office

Questions About Recent Pathology Report

It's been a while since I have posted on here.  Here is a little background on my family...My mom was diagnosed with MM 3 1/2 years ago with four primary melanomas (deepest one had her staged at IIC).  She moved to Stage IIIB after several intransit mets were removed near the site of one of her primaries.  She has been NED for 2 1/2 years and is doing great!  Six months after my mom's originial MM diagnosis, my sister was diagnosed with MM with two primaries.  Fortunately, she is staged at IA.  She has been NED since her diagnosis.  Doctors have su

Morning call from the Dr.

Normally when my cell phone rings at 8:15am in the morning, I expect to hear not so good news as my family and friends know we're not morning people.

But today it was my husbands oncologist, calling to tell us that they got all the final measurements from the latest CT scan and his tumours have shrunk by 12%, after only 7 weeks on the study drugs.

(http://clinicaltrials.gov/ct2/show/NCT01155453)

Earlier this week we were told there had been no change.... which was great as well as his disease had been really aggressive. So this was just icing on the cake.

What to expect from a left posterior neck lymphadenectomy

Last night, pathology confirmed that the lymph node removed from my neck Monday tested positive for melanoma (unknown primary).  All other pathology and my PET-CT scan are clean.

I will contact an oncologist today, but from everything I read and what my doctor says, my next step is a left posterior neck lymphadenectomy.  My doctor suggested that I would be "knocked on my back" for about a week with one more week recovery before I could return to work and activities of daily living.  I do better when I know what to anticipate.  Please help me.

On the War Path...

I have been away for some time, livin life and working to pay previous medical testing and the like.  Received some sobering news that I have some nodes/lesions/mets (? I don't know the proper terms) in my right lung.  I am  BRAF: exon 15 V600K mutation.   Please share treatments that have kept the Stage IV Warriors on the War Path.

My best to all with biggest of hugs and loads of blessings from above!  Most importantly...Many Thanks to You All Who Brave the Waters of Fear and Keep Us Informed!!!

Strange burning sensation in my sternum

I am 39 yo female with stage 1 diagnosed 6 years ago. Whithin a past 3-4 days I started to feel pressuse in my chest (around sternum) and I have now burning sensation which starts in the lower part of sternum, then moves up almost to the neck and then goes down again. I don't feel the pressure any more and probably burp more that ususally and have the hot feeling in the throat. I have never had such feeling before. Does it sound like a heartburn? I am not sure because I can not distinguish whether it is behind the sternum, in the sternum or this is skin feeling??? I am so worried.

Strange burning sensation in my sternum

I am 39 yo female with stage 1 diagnosed 6 years ago. Whithin a past 3-4 days I started to feel pressuse in my chest (around sternum) and I have now burning sensation which starts in the lower part of sternum, then moves up almost to the neck and then goes down again. I don't feel the pressure any more and probably burp more that ususally and have the hot feeling in the throat. I have never had such feeling before. Does it sound like a heartburn? I am not sure because I can not distinguish whether it is behind the sternum, in the sternum or this is skin feeling??? I am so worried.

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