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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Anonymous's picture
Replies 2
Last reply 10/24/2013 - 5:19am

What happened to the ability to click on someone's profile and see all their past posts?

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bethwkiss's picture
Replies 2
Last reply 10/24/2013 - 10:47pm
Replies by: bethwkiss, casagrayson

I have made one post since coming to this site now im freaking out  on october 2 this year I had surgery to remove melanoma from my upper arm and he took nodes 2 of them he said at my follow up he got it all nodes clean well when he was feeling my arm he found 2 bumps under my skin that where not there when we did surgery so he sent me for a ultrasound this was on the same day as follow up october 17th so I come home friday comes nothing monday comes no call sweet all is good well got the call he needs me in his office again this week on the 24th 2 days away now no call good news the call not good I am lost and very new to this cancer heck just found out in august 19th I had it ans just on the 17th found out I was stage 2b I dont want to freak out on him when I go but is this a reacurence just 2 weeks and 1 day after my surgery ?? 

Lisa Newcomb  

Never give up !!!!!!

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arthurjedi007's picture
Replies 2
Last reply 11/6/2013 - 4:38pm
Replies by: arthurjedi007, Mat

I've been on Zelboraf for 8 weeks. The full dose 8 pills a day. I just had my first PET scan since starting it and everything is pretty much the same which is lots of cancer in my bones of either the same or a little worse intensity. Anyone else experience this bad Zelboraf result? My doctor is trying to figure out what to do next. According to the biopsy of my t10 vertebrae I'm BRAF V600E. The first PET scan done shortly after starting radiation showed cancer in several bones but nowhere else. They did pallative radiation of that area which the second PET scan showed a 20% shrinkage but growth in other tumors during those 6 weeks that weren't part of the radiation but still the same bones and nowhere else. Then they put me on zelboraf but this 3rd PET scan has no shrinkage and a little growth plus 2 skin cancer spots. My white blood cells were great everywhere except the one for the bones. Now they are less everywhere. The doctor was quite surprised with the PET results because this only happens like 10% of the time he said. Any advice would be appreciated on how to best beat this cancer. I believe they will probably start me on ipilimumab or maybe the trial that combines that with nivolumab since my doctor is part of that. I'm starting to be concerned if their biopsy was correct. Anyone have a biopsy diagnosed melanoma but it is some other type of cancer? As far as Zelboraf symptoms I've had about a dozen or more. The most noticable is the rash from neck to ankles which is slowly going away. Also a couple cancer spots appeared on my skin and PET scan although I've stayed mostly out of the sun and had the uv clothing and stuff on. Not sure what type they are but one is believe to be the squamish. Also my hemroids have starting bleeding way more than ever and may be more to it so getting a colonoscopy. Also my left side hurts quite a lot but nothing showed on the PET/CT scan. Dunno what else to say. I'm quite at a loss expecting the good results the doctor expected only to have gone through all this with no shrinkage.

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Charlie S's picture
Replies 2
Last reply 10/22/2013 - 11:29pm

Stumbled on this research focus today.  It has to do with biomarkers, signaling pathways and the identification and measurement  of a particular protein that MAY early predict and identify those patients who will or will not respond to current BRAF treatment approaches.

Though not definitive by any means; I sure like the focus of the research.


Charlie S

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POW's picture
Replies 3
Last reply 10/23/2013 - 2:47pm
Replies by: Anonymous, Phil S, Linny

charlesthomas is not a melanoma patient or caregiver-- he is selling financial services. I hope MRF starts getting rid of these jerks very soon.

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Tina D's picture
Replies 11
Last reply 10/24/2013 - 2:35pm

Had my first scans since starting in the PD1 trial. Great report! Lots of shrinking going on in there. I dont know the percentages yet, since the Dr and radiologist reviewed them today just a couple hours after I had them done.

Also, I am having many changes in my pigmentation. I had vitiligo on my face previously ( it started after interferon a few years ago), and it has increased. I now have vitiligo on hands and arms and numerous halos on my back. I also now have some eyelashes that have turned white! My Dr said this all fits with the good response I am having, and shows the positive immune response.

So, it was a long day, but a good one. I am so very thankful.

Tired, but happy,


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bkinman's picture
Replies 5
Last reply 10/31/2013 - 7:59pm

Had burning with urination this morning and then blood on tissue (some blood on tissue Sat night - thought it was due to relations with my husband), classic signs of UTI. Called oncologist and they sent me to Family Dr. for urine test. Second trip to restroom of the day, before going to Dr., there was blood in toilet after urination. Have had multiple UTI's in my 43 years, but never had blood in toilet. Went to Dr and test did show some infection (said small amount) and lots of blood. Of course I took to google and one of the signs of bladder cancer is gross hematuria (visible blood in urine). Only post I could find on here in reference to bladder cancer and symptoms she had blood in urine.

I called Onc and told him what test results were and he told me to take the 500 mg of Cipro for 2 days only and take dificid - due to 3 occurances of cdiff in last 3 months.

Now I am concerend that the mel could be in my bladder. Last scan was August 8th (or 9th, can't remember). It was clear except for spot on liver that was doing better. Nodule in lungs we are watching - no uptake on PET. Spots on spine are stable. 

Any thoughts. I go to Onc tomorrow, but I think it is just for Xgeva shot.  I will ask nurse if a ultrasound or other scan may be in order.

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DeniseK's picture
Replies 3
Last reply 10/23/2013 - 8:55pm
Replies by: Tina D, DeniseK, Phil S

Hello All,

Just wondering if anyone else is having issues with their ears.  My right ear won't pop and there's like a fuzz.  I have been congested and don't know why.  When I blow my nose there are spots of blood.  Nothing major just a couple of specs.  I have a call in with my doctor but still waiting to hear.  There is no pain, just annoying and some ringing,  It's been almost 2 months since my last brain procedure which was gamma knife on 16 mets.  I'm also taking mek/braf combo and finished Ipi about a month ago.  

Thanks for your help


Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Anonymous's picture
Replies 2
Last reply 10/22/2013 - 1:39am
Replies by: JerryfromFauq

Friday I had my second PET scan for the year, the one I had back in April of 2013, showed that I was still in remission.  I am expecting nothing less but good news tomorrow when I go for the latest results.  For now Its been two years for myself since my diagnosis.  This year I only had to go twice for my test, since last April i am officiallly in remission.  During my test on Friday, I had to do labs work first, and they wound up poking me and finally finding my vein on the fourth time.  Mayone I will find  soneone that find that vein on the first try next time.  Until tomorrow, I will check back in and let everyone nkow the results of that test.



I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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flvermonter's picture
Replies 8
Last reply 10/24/2013 - 1:09am


I haven't been on in awhile and very nervous today.  My husband had 5 weeks of 2 treatments a day for lung cancer and melanoma.  After which we discovered his bovine aortic valve needs to now be replaced.  This has been an awful year.  We get the readout tomorrow of the PETscan from last week.  God willing there are no hot spots of melanoma or lung cancer. 

I am staying so positive, and the kids will ask how are you. Of course I say fine, but it requires me to continue to not think of "what ifs".  I guess it because tomorrow we will know, all the anxiety is kicking in for me.  So scared that they will find something.  That would compromise the valve in valve replacement trial procedure for him.

I guess my questions are, does radiation impact the calcification on a heart valve, or has anyone heard of that?  I will be asking the Radiation Onc tomorrow as well, but just curious.  Other question is has anyone experience with NOT taking the medical onc treatment after surgery?  My husband decided not to take it until after this PETscan.  Thinking if no spots, he would not take it. If there are spots, now sure how he can handle treatement with his valve.

Thanks, Mary



Hugs to all, patients and care givers.

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HelenQLD's picture
Replies 6
Last reply 10/26/2013 - 2:46am
Replies by: HelenQLD, JerryfromFauq, POW, Anonymous

My mum starts fotemustine chemo on Friday.  Anyone have any experience with this treatment?

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Anonymous's picture
Replies 7
Last reply 10/22/2013 - 7:20am
Replies by: Anonymous, JerryfromFauq, Janner, POW

What exactly IS a good skin exam supposed to involve?  I mean a REAL full body skin check, keeping in mind the patient has a history of melanoma. 

I'm on my 2nd dermatologist whose idea of a skin exam is "here's a gown, leave your bra & panties on" and after few questions and a cursory skin exam is out the door in 3-5 minutes. Then they ask on the way out the door "So, when do you think I need to see you again?  Six months or a year?"  Ummmm...  You're the doctor. Isn't that one of the things I'm paying you to tell me? What do I think?  I think I need a new dermatologist.  THAT'S what I think.

I "fired" the first dermatologist (after several years) because I suspected his skin exam was incomplete.  Now I'm on my 2nd - and his was even WORSE.  (At least the first made an attempt to move my bra and panties aside to see what was underneath - the 2nd didn't even touch me.  I guess I shouldn't have been surprised - my oncologist's referral consisted of "He's a good guy - we go to the same church together". Gotta love the South.)  BUT now I've had TWO dermatologist do skin exams the same way, and I've started to wonder if my expectations are off.

Background - I'm a stage III melanoma survivor, NED for 4 years now. I still visit my oncologist bi-annually for PET scans and bloodwork.  Other than the nurse taking my BP & weight, these visits do not include ANY sort of physical exam.  He seems to rely on the bloodwork & PET scan to tell him everything he needs to know.  He is not a melanoma specialist.  (Yes, if the beast returns, I intend to find a specialist.)


"A little ingenuity and a lot of duct tape will solve many problems.", AKC Agility Judges Guidelines

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dovemed's picture
Replies 1
Last reply 10/20/2013 - 10:00pm
Replies by: dovemed

Find all the information about surgical excision of melanoma at is a physician approved health information portal. 

Thanks and wish you well with melanoma treatment.

God Bless


DoveMed is a trusted, physician-approved, and simple to understand, health information resource. At DoveMed, we believe that trusted medical information helps you make better healthcare choices for you and for your loved ones.Visit

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Tim--MRF's picture
Replies 3
Last reply 10/20/2013 - 9:12pm
Replies by: Charlie S, POW, Phil S

A number of us--including Charlie, me, and several others--received an email from a "Miss Ngone Hadiza" saying she likes our profile and wants to talk with us.  This raises concern that the site has been hacked.

After speaking with some IT experts the situation is a bit different:  

--Only someone who has registered with MPIP is allowed to send messages to others on the board.

--At no time is anyone provided with the personal email address of another membler--all of these messages go through an anonymous server account.

--In order to register you must physically enter certain information that includes some security procedures.

--Once registered you can send email to other members of the board.  If, however, you abuse that privilege you can and will be blocked from the board.

All of the above has been true for several years, and did not change with the new website.

In this specific situation, "Miss Hadiza" has been blocked and we will watch for other suspicious activity.  This person apparent registered in a legitimate fashion, then went through the board selecting users one by one and sending out emails.  This is incredibly insensitive and malicious, and will not  be tolerated.

Special thanks to Charlie and Jan for calling this to my attention.



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KRob's picture
Replies 0

This site has been hacked. I, too, have received emails from suspect "members" from this board.
I did not respond to them.

Too stinks that anyone would hack into any site let alone a cancer forum where you really want to trust the info and people you meet.

"Write it on your heart that every day is the best day in the year." - Ralph Waldo Emerson "Dreary though the path may look to others, it has quiet lights and gentle shades that no other path in life can offer."

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