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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Justme's picture
Replies 7
Last reply 11/13/2010 - 10:26pm


Background information, brother dx with melanoma from area on finger that was left untreated and undiagnosed for 9 months.  Had PET scan in June which lit up lymph nodes under same arm as finger and.  Finger was amputated, lymph nodes removed, one of 22 found positive, size 4.5 cm.  Very few of the nodes had normal color.

 CT scan  May 2010 showed few pulmonary nodules two in right lung one being 6mm and the other 5mm. maybe one in left lung.  Third nodule in pelvic area 6mm soft tissue.              


PET Scan lit up nodes in axillary area and the finger area. No nodes lit up in lungs in pet scan but saw nodules....may 2010

In July 2010 nothing lit up on Pet scan or any nodules seen. 

September of 2010 Began treatment of intefuron instead of interluekin as lungs were negative.  Is now on the self injections.

Last week had another CT scan which showed significant growth of lung nodules and increase in amounts.  One physician has told them that the PET Scan is more accurate, the physician they spoke with said today that the CT scan is more accurate than the PET when it comes to the lungs. 

Ideas, suggestions, questions,  Help Please?

Just me

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dian in spokane's picture
Replies 9
Last reply 11/13/2010 - 9:34pm

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.

This month's reaction has given me a new empathy for those who suffer from lymphadema. My arm was swollen from shoulder to below my elbow. Last night was fairly painful, with the swelling around my elbow giving me the most problems, making it very difficult to bend my arm without pain. I'm still swollen tonight, but it's not painful anymore, and I think the itching has stopped.

I still feel like the side effects of this trial are very mild, especially when compared with other treatments and trials.

Hard to believe but I only have ONE shot left. I go back for skin tests and shots next month from the 8th the the 10th and then I am done with all of these trips to California. I feel very confident about making it through the trial without any recurrences.

This month it's been 2 yrs since I advanced to stage IV and, needless to say, I am thrilled to still be NED. I was NED for 11 months before starting the vaccine, so I guess there will never be any way to know if my continued good status is a result of the trial, or just my own good luck

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MichaelFL's picture
Replies 4
Last reply 11/13/2010 - 9:27pm
Replies by: King, Becky, DebbieH, ValinMtl

Hello James.

I know it is already Sunday morning there in Australia, and I do not know if you will be able to come to the board today, so I just wanted to say that I will say a special toast for you and your son Michael.

As a parent, I also wanted to thank you for all you have done here both during and after, as yours was an event that no parent should have to endure, and for finding the strength to still stay on the board. I can't even begin to imagine how I would respond if it were to happen to me and my family.

"A toast to you" from the other side of the blue marble.


This information is for general patient educational & information purposes only. It should not be used for diagnosing/treating a health problem or disease. If you have or suspect you may have a health problem, you should consult your healthcare provider.

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fliberdy's picture
Replies 23
Last reply 11/13/2010 - 1:57pm

I have had mel for 2 months now and I think I finally  know what to say. It usually goes like this "You have melanoma? Oh, my friend, cousin, uncle (insert relationship here) had that and after a long battle and lots of suffering they DIED)!!!!"  SHEESH! Don't they realize that could be me? What in the world? I usually just stand there feeling hurt and dumbfounded. Now, Im not the kind of gal that takes pleasure in hurting another persons feelings but this thing is really bugging me. Has this been happening to any of you? What do you say to these well meaning people? Here is what I think I will say the next time someone begins to regale me with a horror story. I am going to look sincerely into their eyes and with a very kind voice say "Oh, I am so sorry that your friend (whoever) had this awful disease, I sure do hope this story has a HAPPY ending, otherwise I would rather not here it thank you very much".

Trying to stay positive here


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EricNJill's picture
Replies 2
Last reply 11/13/2010 - 12:59pm
Replies by: Carmon in NM, jolainajo

Eric had the emergency Craniotomy on Saturday, November 6th.  He still has balance issues and just wants to sleep all day.  About 4 days before he had the surgery he started with hiccups around the clock and immediately after the surgery the stopped but now they have started again and I'm worried that maybe he has some swelling in the brain.

Is it normal for him to be very fatigued?  What should I expect?  Also he is scheduled to see someone on Monday for Gamma Knife, what should I expect from that as well.

Thank you guys.  I don't know what I would do without all of you.

JillNEric In OH

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greendragonfly101's picture
Replies 29
Last reply 11/13/2010 - 10:26am

need for suggestens for recovery from surgery

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EricNJill's picture
Replies 18
Last reply 11/13/2010 - 9:58am

Tuesday, Nov 2nd we found out that Eric had a 3 CM tumor in the brain.  It was new since his last brain scan on September 8th.  We were looking into Neurosurgeons when Friday Eric wasn't making any sense and wasn't finishing sentences.  I called Kirkwood's nurse and she told me to take him to the ER.  In the ER they determined that he should be careflighted from Dayton, OH to Pittsburgh, PA for emergency surgery.  Saturday, Eric had a emergency craniotomy by Dr. Mintz in Pittsburgh.  He is now home and doing well.

They said that he should have Gamma Knife Radiation to the tumor bed so we are seeing someone about that next Monday.  I don't think Eric is going to be able to work anymore.  He definitely can't drive due to loss of his peripheral vision.  He sometimes gets confused about things.  He was trying to turn up the radio in the car and was turning the 4x4 knob while I was driving down the highway.  He also asked me when I put all the buttons on my steering wheel (they've always been there).  I'm hoping that maybe this is normal 3 days after surgery and that as time goes on he will get better.

After Gamma Knife they said he should start Temodar.  This is all very new to me.  Eric's cancer has always been confined to his leg.  I'm so scared.  As many of you already know, it's so hard to watch someone you love go through so much. 

If anyone has any advice on anything, I could use it.  If we file for Social Security, he has a 5 month waiting period correct?  and after that 5 months you do not get back pay for it, right?

Thanks for any help.  JillNEric in OH

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Jim in Denver's picture
Replies 13
Last reply 11/12/2010 - 10:26pm

BMY is changing the name in anticpation of FDA approval.  There will be a meeting on Dec 2.  Here is an excerpt about the meeting  and a link to the FDA site for more information:

Public Participation Information

Interested persons may present data, information, or views, orally or in writing, on issues pending before the committee.

  • Written submissions may be made to the contact person on or before November 16, 2010.

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naty's picture
Replies 3
Last reply 11/12/2010 - 10:22pm

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.

Anyone here have surgery for brain mets?  No option given here currently (just in case no response to radiation).  

Thinking for him (IF he qualifies) the PLX4032 study vs IPI.   Or will they be big advocates and informative?  here his dr knows nothing other then WBRT and temedor.  

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emilypen's picture
Replies 7
Last reply 11/12/2010 - 8:21pm

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.


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.

Don't usually like to start my day crying but today they were happy tears.

Have a great weekend all.



Husband Stage IV, bone & soft tissue mets

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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.

I'm sure some of you have had this procedure.  How did it go for you?  What was recovery like? How long did it take to get back to a "normal" daily routine, and what was different when you did so?   What surprised you about the process?  What helped you get through it?

Thanks for your help.  I've been reading this board since Monday, and it's a wonderful community.

Stay strong, everyone.

Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill It ain't over 'til it's over. Yogi Berra My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

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Suzan AB's picture
Replies 8
Last reply 11/12/2010 - 1:48am
Replies by: Suzan AB, Jenjen, Jim in Denver, Cynthia C, Charlie S, Anonymous

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!!!

Suzan AB  Stage IVa...well maybe Stage IVb now...Purple Painted Warrior Against Melanoma!  With a splash of bright Yellow!

Life is great, PTL!!!

Presently...One Day At A Time.

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Vermont_Donna's picture
Replies 8
Last reply 11/12/2010 - 1:33am

Hi everyone,

After a teary week and looking at all my options and feeling so exhausted and with the unhealed leg wound, and now starting IPI next week, I have decided to resign from my job as a school based clinician. I see 30 kids a week in three kids and it was just too much. I am not taking care of myself nd now my melanoma is back, two months after I completed radiation. Because I havent been working a year (only went back 6 months ago) I am not eligible for FMLA. I will however just resign and will get short term disability from work and then long term disability and I will get my SSDI back too. I will pay to COBRA my health insurance for me and my two kids in college.

Ok questions...... #1.what are peoples main side effects to the IPI? I am getting four infusions to start, three weeks apart. Is this what others have done?

Question 2, My tumor was analyzed and I am BRAF negative. What does this mean for me (or not mean)?? Does it rule out certain treatments or trials??

Thanks so much everyone,

 Vermont _Donna, stage 3a, post SNB, WLE, 11 months of low dose interferon, 7 months of Leukine, ILP at Mass General in Boston, two rounds or radiation, and numerous surgeries and hospitalizations for cellulitis infections, and now left with fairly severe right leg and foot neuropathy. Oh and on lots of drugs.

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kellie1979's picture
Replies 7
Last reply 11/11/2010 - 11:00pm

I went to a dermatologist for a spot on my leg that was hurting....luckily it was only a cyst.  However, she noticed that one of my moles was concerning so she removed it and took a quick look at my back and removed two more.  I am only 31 and never even thought that I needed to worry about my moles yet.  They came back abnormal, I went in for what I thought was a full body check.  The PA did NOT check my whole body (I wish I had known at that time what a full body check was supposed to be) she removed 5 more, 3 from my back, one from my stomach and another one from my leg.  Four of those came back abnormal, the other one the doctor sent back to confirm that to him it appears to be Melanoma.  I have since met with a cancer genetists who thinks I need to be tested for Dysplastic Nevi Syndrome due to my family history of cancer and the amount of moles that I have.

Well anyways, it has been over three weeks since I found out that it may be Melanoma.  Does it always take this long to find out?  I am trying not to worry too much but I seriously have not been sleeping well at all and am about at my breaking point.  Many people in my life do not understand why I am concerned as most of them do not understand there is a difference between Melanoma and the other types of skin cancer that are not as threatening.

I already know that once my pathology comes back (hopefully tomorrow) I am going to go to a different dermatologist as I keep finding moles that look similar to the ones that were removed.  And I don't know if I am just paranoid now but I swear everytime I look in the mirror I find a new mole that I didn't know I had.  I am also worried about my daughter, she is 7 and has had several moles appear lately.  Is this normal or should I be worried about what this means for her?

I am sorry for the rambling, I just don't know what to expect and am not finding much support in my personal life.

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Anonymous's picture
Replies 3
Last reply 11/11/2010 - 6:42pm
Replies by: Janner, Brandi, Jim M.

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. Any idea what it could be???? Thanks!

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