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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lost's picture
Replies 11
Last reply 2/15/2011 - 3:14pm

I was just recently diagnosed...literally hasn't been but a couple of weeks. They say I have stage iv with tumors on my colon, lung, spine, spinal cord, and on my brain. So far I haven't really been given anything towards my next step, just that it will most likely involve surgery, radiation, and chemo.  I'm so in the dark about this and how to deal with this for myself and my family and kids. Can anyone point me in a direction?

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EricNJill's picture
Replies 31
Last reply 5/17/2012 - 10:21am

I can't even explain to you in words how I am feeling tonight.  After so many FAILED treatments in the last two years, we've finally found one that looks like it is working.  Nothing even stopped progression before.  When we found out the cancer spread to Eric's brain on November 2nd, I was devastated.  It was one week before we were supposed to start a BRAF treatment in Nashville.  Well God had another plan in store for us...we got the last opening in a BRAF/MEK trial in Nashville and we feel so blessed by these changes in just 2 WEEKS! 

I hope that no one is offended by this graphic pictures, but I had to share...



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Jan in OC's picture
Replies 8
Last reply 2/13/2011 - 6:35pm
Replies by: Jan in OC, Anonymous, KatyWI, Rocco

Sooo....when my husband broke his humerus bone in his right shoulder, the ER put an "immobilizer" on him.  Everywhere the elastic touched his skin, he broke out with nasty rash and hugh blisters!  Our PCP and Onc consulted and finally decided that the IPI infusion "assisted" his body's severe contact allergic reaction.  Unfortunately, they had to give him steroids, which the ONC said would decrease the effectiveness of the IPI :(  

Doc said the steroids will make him grouchy.  "too late, he's already there"!!!  I have been wearing my "nurse jackie uniform" all week. 

We go to the Orthopedic doc on Monday to check his arm swelling (lymphadema is not helping)!  On Wednesday, we go to UCLA for his second IPI infusion. RadOnc called me today and scheduled his brain MRI and mask simulation on Wed, 2/23, then SRS can be scheduled (maybe the week after, can't wait). I hope there is still only one small tumor.  In between all of that, we will be getting treatment for the blistering and broken arm.  Keeps us busy and out of trouble!

Took the paperwork to the lawyer this morning for our bankruptcy and will have to move somewhere new by spring, probably out of state because SoCal is just too expensive to live on our reduced income.  Damn bank won't give an inch.  Gotta get packed with help from the one armed man!   Will have to find a place to live (rent), new docs and treatment close to wherever we go, so many things to worry about.  Just trying to think of it as a fresh start. yeah.....

What a freaking crazy time we are having!!

Jan, wife to Dirk

laughter is the best medicine

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mkummerle's picture
Replies 6
Last reply 2/11/2011 - 11:01pm

Diagnosed Stage IV March '09.  Bone Mets to spine several tumors throughout body and lyphnodes.   Tried Interferon for nine months, GMC-SF for four months, Interleukin II,  Temodar and Ipilimamub.  Negative for BRAF.  All have been failed treatments.  Next line of therapy will be standard Chemo with Carboplatin and Taxol.  I'm  feeling like nothings going to get me a response.  Feeling like it's not worth it to start next treatment only to be set up for failure again.  I'm about ready to just let it take its course.  Just venting, thats what this board is for!   Thanks all!

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dafad777's picture
Replies 10
Last reply 2/12/2011 - 2:57pm

I was wondering when i go see the melanoma specilist if anyone knows if he would recomend slnb or should i say something about it.only because of what i've read said when they go back in for re-incision sometimes they do the one did one on my daughter and they went back in and took 5mm more off her ear.and she has not had an xray,a cat scan,pet scan nothing.i think she should have already had something.her first surgery was oct 26th.2010.

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Melanoma Mom's picture
Replies 8
Last reply 2/12/2011 - 7:29am

I think we should all E-mail this "doctor" and set him straight, as I have already done. His information on Melanoma is so incorrect and ridiculous, it made me want to scream and laugh at the same time! What a fool. He actually states that using sunscreen has increased the cases of melanoma!


Join me in encouraging him to either remove or correct his article.

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Angela C's picture
Replies 4
Last reply 2/11/2011 - 7:16pm

Hey everyone.

I just had my first cycle of IL2 in January. My second week in the hospital was the week of the 24th. After each round, I have been experiencing a strange sensation in my head. I would describe it as a medicine head feeling. I just feel kind if out if it. I am kind of light headed and dizzy. It us a hard sensation to describe.

I had this after the first week and the doctors seemed surprised by it and not sure what to make of it. I was originally attributing it to the anti anxiety meds I had taken, but those have been out of my system for a week and a half now and this feeling is still here.

I gave a check up with the doctor on Turs and we'll definitely be talking about it. I just wondered if anyone else had experienced something similar.

I can't help but have the thought cross my mind that I could have a brain metastasis causing these symptoms. But, I'm trying not to freak out.

Anybody have a similar experience??

Be kind, for everyone is fighting a great battle. -Plato

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Rick from NC's picture
Replies 9
Last reply 2/13/2011 - 8:03pm
Replies by: ellen - dads daughter, JoanR, Anonymous, michelleg

Is anyone attending the UNC Melanoma Day program in Chapel Hill on Feb 23?

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mimi0201's picture
Replies 5
Last reply 5/27/2013 - 8:43pm
Replies by: kev1h, mimi0201, lhaley, Anonymous, skysar

     Could anyone here  provide feedback regarding the TIL trials at the NIH?  Thanks.

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LHogg's picture
Replies 12
Last reply 2/14/2011 - 7:41pm
Replies by: paul, dawn dion, Anonymous, jag, glewis923, NicOz, Bonnie Lea, Kim K

Adelphi is an independent market research company specialising in the pharmaceutical industry. We are conducting international research to gain insight into the impact of living with stage 3/4 melanoma, on patient quality of life around the world

The research aims to provide patients with the opportunity to discuss your melanoma experiences to date and your perceptions of the melanoma treatments you have undergone, identifying key unmet needs
Findings from this research can then be used for the further development of future melanoma therapies
Patients are needed for a 90 minute discussion by telephone or in person and you will be reimbursed for your time. You will also be required to complete a small amount of ‘homework’ prior to the discussion, to take place between 17th Feb – 11th March
If you have been diagnosed with stage 3/4 melanoma and are interested in participating please see country specific contact details below:
Karin Chwallek
+49 (0)69 254262512   
Ref: ZR11022
+33 (0)3 20 93 31 47 
Sydney, Australia

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glewis923's picture
Replies 3
Last reply 2/10/2011 - 8:35pm
Replies by: glewis923, Linda J, NicOz

Dear All:   Completed my 2 SRS (NovalisTS) sessions where hopefully 5 brain tumors are now simply compost.  Next Mon. I start a 2 week WBRad. as i have at least 7 more "meaurable" 3mm + tumors and God knows how many microscopic c-cells.   SO.....I have no choice but to WBR.


Despite a lot of "scare stories", I ain't really skeered a lik, BUT,  I would like any advice on those of you who may be already an official ranking member of the exclusive WBR Club.  Like:  What should I eat,  what to realistically expect, and anything that may be from your 1st hand experience.   I'm pretty tough, triple chemo didn't hardly phase me.  The I-feron was a little rough (Mostly mental i think- it will cure smoking, eating, and anything you may enjoy!), but i perservered.  If i loose a few more brain cells, I'll just hav't to resign from Mensa !   ha...ho...weep.

Thanks for any advice!   Love All,  Grady & Family.

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MACK under the knife's picture
Replies 5
Last reply 2/11/2011 - 6:24pm

So after a right side full neck and face  surgery, They removed a tumor the size of a small lemon. They performed several weeks of radiation and here we go again. Looks like they didn't get it all as I have another lump growing in the same area as before. Looks like I am headed in for another slice and dice with radiation and this time I think I will have no choice but to have chemo. Alittle nervous with the chemo as I have seen the effects. How do you make a kid believe your gonna be fine when that stuff brings you so close to death. My wife and I have talked about when we'll tell her if chemo is necessary but man this is rough on her she doesn't need this. I can deal with all this but I feel bad when she starts asking me if I will be here  to walk her down the asile. She is 13 how do you answer. I put on the tough guy and say I will be here as long as I can and I'm not ready to leave. She doesn't buy it. It also hurts that we have no money for the things she has been use to doing. Paying for the meds and the hotels and hospitals has made it hard. Keeping the mortagage and utilities paid but not knowing what happens if the lay me off . Hoping for the best prepping for the worst.


Thanks for listening


Mac under The Knife

Nothing is as important as this moment, Your life can be changed in a single Moment and you can live a lifetime in a moment if you believe

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Rick W's picture
Replies 1
Last reply 2/11/2011 - 10:13am
Replies by: y'all Come In


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Hello, Ive been visiting this site for almost a decade since I was diagnosed in 2001. I never fail to be amazed by the level of support you provide for each other.I am stage IIIb and have now been NED for seven years. I consider myself to be very lucky indeed and in some ways the last ten years have been the best of my life. I took early retirement when I was diagnosed, I have a wonderful wife, five great kids and six grandchildren (born since my diagnosis). However I am always aware that the cloud of melanoma does not go away and that many people have not been as lucky as I have been up to now.I am taking part in a charity walk to raise money for The Royal Marsden Hospital, where I have recieved outstanding care. If anyone would like to help please go to Thankyou!

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CLPrice31's picture
Replies 25
Last reply 2/18/2011 - 11:58pm

Hi all! I am the latest newbie...stage 3, "some would say stage 4" 23 year old from Virginia.

It started similiarly to many other stories. I was washing the dishes, had an itch, scratched my back and felt something unusual: the mole on my left shoulder felt like a scab. When I had my boyfriend look at it, he realized there was a clear fluid coming from it. Although the mole had healed by my appoinment with my dermatologist, I decided to have it checked out anyway. He seemed confident it was nothing, but just to be sure, he removed it.

On January 10, 2011 I went in to have my stiches removed. I am joking with the nurse, making plans for my evening, when the doctor walks in. I hear, blah, blah blah, "Malignant Melanoma. No, I wish I was joking."


That is SO not what I want to hear...

On January 26, 2011 I went in for a wide excision and a lymph node biopsy. Unfortunately for me, 4 areas lit up when the tech's injected the dye: both armpits, both sides of my neck. Prior to rolling me into the OR, my surgeon let me know that if he could find the lymph nodes, he was removing them. Waking up from surgery, he, who I refer to as Dr. Pink (breast cancer advocate,) was right there...Yes, he removed nodes from all 4 areas. Yes, it's going to hurt for a while.

(Dr. Pink was right about the pain...OUCH. And the numbness I still feel 2 weeks later? Very odd. Lucky for me, my body rejected either the tape they used to cover the incisions or the glue used to seal me shut...Now I am covered in an itchy, raw, red rash. I started an antibiotic a week ago, so far it is not working.)

A week of pain and waiting passes...the oncologist, (who I refer to as Dr. Bad Mustache. Love him but...!!) calls me into the office. 3 out of 4 locations tested positive for metastatic malignant melanoma.

More bad news.

Off I go for the PET CT and MRI...Both came back clear! Finally...good news!'s where I need help. My oncologist here believes Interferon is my only option at this point.

I don't like what I have read about Interferon so far.....Experiences from you all? Thoughts?

I have an appointment with Dr. Mark Dickson at Sloan Kettering in New York City on the 25th of this month. Any opinions here?

My oncologist here stressed that I am an "odd" case. My original melanoma was only 1.15 mm. It hardly made critera for additional testing. He admitted to us this week that he did not believe my lymph nodes would come back positive. And he especially could not believe that multiple locations were positive. In his words, "You are an odd case. Right now all we know is that it has the ability to spread."

Any advice, support, experiences...I would greatly appreciate hearing it all. Like many of you, I have a hard time resting. I am doing as much research as I can possibly do, but sometimes that does nothing but terrify me even more!

In advance, thank you for any and all help!

"The odds are that the...the odds mean crap. So people should face it, and they should fight." ~Grey's Anatomy.

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