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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ValinMtl's picture
Replies 5
Last reply 7/21/2011 - 8:45am
Replies by: Vermont_Donna, ValinMtl, Anonymous

Hey Donna, haven't seen your name posted recently.  I trust all is well.  Just to let you know that I purchased the solaris tribute garment.  What a saves my husband from wrapping my leg daily.  I can put it on myself!  Hopefully, the tumors will shrink and I'll be able to get back into regular 30/40 garment but for now I use the solaris tribute garment almost daily and nightly.  Quite expensive though!!  $1600...thank goodness, hubby's health insurance covers 90% although only up to $50,000 and that has gone down significantly during the past 3 years with all the meds and support hose.  Val xx

Live Laugh Love Nothing is worth more than this day!

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Bruce in NH's picture
Replies 15
Last reply 7/21/2011 - 8:36am

Just thought I would post my latest setback in trying to enter a T-cell targeted therapy clinical trial at NIH. NIH requested CT scans and brain MRI last week. After over 10 years of brain-free mets, I got the surprise of my life. Opinion of radiologist: " Multiple bilateral cerebral hemispheric metastases." Initial count is greater than 10, which exceeds the NIH acceptance criteria by at least 7 (3 or fewer mets with none greater than 1cm. in size). The report is preliminary so there is little to no detail on size but mets appear scattered from front to back primarily on the right side. I have had no headaches or brain fog to alert me to a problem, which makes the diagnosis that much more frustrating.

So I start a new journey into the unknown. I've done some research on brain mets but would appreciate comments from those of you familiar with multiple brain mets, specifically what questions I should ask the radiation oncologist when we meet next week for a consultation. It looks to me like my only option is Whole Brain Radiotherapy (WBRT). If you or your spouse/partner/family have had experience with this treatment, would like to know what to expect in the way of side effects. I'm sure they vary from patient to patient but for now I have to start somewhere. Thanks for sharing your experiences in advance.

Bruce in New Hampshire

Life is a journey, not a destination. Enjoy every minute of it with family, friends, and with others who may be ill and fighting melanoma.

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Laurie from maine's picture
Replies 7
Last reply 7/21/2011 - 7:04am


I just came back from hospital where I had a tumor removed from intestines which was causing a blockage.  The tumor removed from intestine was melanoma and scans found tumor in my liver and left lung  Brain mri showed all clear there..  I also am having strong pain in my left shoulder pretty constant so they re thinking it is in my bones there.  Met with Dr Lawrence mass general yesterday.  My tumor is being tested for Braf and that is the option he suggests we go if I test positive.   We will discuss what we do if I am not Braf positive, I believe they were leaning to ippilumb(sp?).  My husband and I are trying to absorb all of this. 

I believe Dr Lawrence is one of the best as far as being up on reseach and trials and am feeling that he can help guide us thru this.

any thoughts? I know it is real basic info, my family is currently overwhelmed as my baby sister is in hospital today having double masectomy and we are all trying to surround her and help her thru this, so timing for my melanoma to resurface stinks.

laurie from maine

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jmmm's picture
Replies 3
Last reply 7/20/2011 - 9:46pm
Replies by: ValinMtl, JerryfromFauq, Anonymous

My husband was dx with stage 4 in January.  He had 2 surgeries to remove 2 tumors (sm. bowel and lung).  He has the c-kit marker and was put on Gleevec for 7 weeks.  A follow up scan showed 2 new tumors--one in the small bowel and one near his heart.  His dr. started him on Yervoy.  He completed his 4 doses and just had his 12 week scan.  The GI tumor was completely gone and the heart tumor was "dead" and half the size before treatment.  We were amazed.  Unfortunately, there was some activity in some lymphnodes in his belly--the radiologist believes it to be new tumors--the largest one was 2.4 cm with an uptake value of 5.6.  These tumors were not there before the Yervoy treatment.  The Dr. isn't sure what to think--my husband is the fist patient he's treated with Yervoy.  He thinks it could just be an immune reaction from the Yervoy.  Has anyone heard of a yervoy taking care of tumors, but allowing new tumors to grow??  Or has anyone heard of yervoy causing lymphnodes to appear as new metastisis??  The Dr. wants to rescan in 6 weeks, but we're both nervous waiting.  Any thoughts??

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Gene_S's picture
Replies 3
Last reply 7/20/2011 - 7:07pm
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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RMcLegal's picture
Replies 3
Last reply 7/20/2011 - 4:08pm
Replies by: RMcLegal, washoegal, Anonymous

If you hate melanoma because of how it's affected your life or that of a loved one, please "like" this facebook page.  The more of us who demonstrate our support for sending melanoma packing on the highway to hell, the more likely it is that we can convince corporate sponsors to support great organizations like the Melanoma Research Foundation.!/FriendsofMelanoma

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Anonymous's picture
Replies 15
Last reply 7/20/2011 - 7:03am

Recently diagnosed last month when lump in left groin surfaced. Opted for full groin lymph dissection. PET/CT did not show evidence of disease has spread though area in muscle of left thigh showed concern. Area of left muscle was removed during dissection and surgeon is unable to tell me if area was a prior node or disease spread so on the side of caution this moves me from Stage III to Stage IV in their opinion. Treatment has not been determined as yet - local area is not very aggressive with this type of cancer. I have appointments at Johns Hopkins and Sloan Kettering in the next few weeks. Looking for any suggesstions and/or similar situations and treatments you may have considered. Need to 'flip the switch' to positive thoughts as I am still consumed with fear, the unknown and not being here from my children who are so very young. Thank you for reading and thank you in advance to those that respond - God Bless.

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JerryfromFauq's picture
Replies 17
Last reply 7/20/2011 - 4:40am

The pathology on the breast tumor I had removed on the 6th came back as benign.  Thanks for all your concerns and well wishes.

I'm me, not a statistic. Praying to not be one for years yet.

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DeniseK's picture
Replies 9
Last reply 7/20/2011 - 1:03am

Hey Everybody,

I had my PET Scan and Brain MRI last week.  They both came back clear!!  Whew!!  I was referred to the Northern California Melanoma Center in San Francisco and I'm going this Wednesday to determine what kind of treatments I should do.  Since I'm stage IIC it's usually Interferon which I read works well on ulcerated tumors and decreases the risk of recurrence.  I still haven't seen an oncologist!  This is pissing me off because you would think my surgeon who's a general surgeon, Not oncology surgeon, should have referred me to an oncologist immediately following my surgery!!  Well I found out from Dr. Weber in San Fran that I'm missing the LDH and CBC blood tests!  It's basically too late for me to get these before Wednesday so he said he'd be sure to order them for me.  This is why I should have seen an oncologist!!  DUH!!  It's been 6 weeks since my surgery and I haven't had any blood work done!!  I was wondering what tests should have been done!  Anyway I feel so much better getting into San Fran to see specialists!  My surgeon is referring me to see an oncologist after Wednesday too.  I'll update on Wednesday or Thursday what they said!! 

Denise :)

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

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manu000's picture
Replies 14
Last reply 7/19/2011 - 10:41pm

My girlfriend just before his 25 years was diagnosed with stage 4 melanoma metastases, has been affected to the brain and  lung and other lymph nodes, in the neck, in the abdomen and in the left leg.
She has already faced an surgery radio therapy (gamma kinfe) to the head and started a new treatment "ipilimumab+fotemustina (Muphoran).
The treatment effects did not know that they have, but it certainly she is not feeling well. Is losing its vitality and even his work with disabled boy start to have problems.
Someone has experience with this therapy?
I am believes that this is only a moment along our lives, and that we can overcome it.
I believe she is doing in therapy, but in the meantime I am also informing about various alternative treatments. You have experience about it?
I informed myself on the Gerson method, Di Bella.
Now, after reading his story, the journey to Ginny Fraiser (, knew her history? what do you think about?

thanks to all

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RMcLegal's picture
Replies 1
Last reply 7/19/2011 - 10:24pm
Replies by: Anonymous

If you hate melanoma because of how it's affected your life or that of a loved one, please "like" this facebook page.  The more of us who demonstrate our support for sending melanoma packing on the highway to hell, the more likely it is that we can convince corporate sponsors to support great organizations like the Melanoma Research Foundation.!/FriendsofMelanoma

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If you hate melanoma because of how it's affected your life or that of a loved one, please "like" this facebook page.  The more of us who demonstrate our support for sending melanoma packing on the highway to hell, the more likely it is that we can convince corporate sponsors to support great organizations like the Melanoma Research Foundation.!/FriendsofMelanoma

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boot2aboot's picture
Replies 12
Last reply 7/19/2011 - 8:09pm

Found out i am Braf + and fishing for treatment/clinical trial ideas...i know vemfenurib (sp) only works so long so i am interested in combo treatments that hit Braf and Mek pathway...i am currently doing chemo 5 days every two weeks CVD...i have 3 liver mets...5 possible lung mets...brain MRi clear...something is going on with my kidney which is enlarged...i am having a stent put in tuesday...i did mail my paperwork to Dr Rosenberg for possible TIL study...but of course have to wait for chemo course first and wash-out.

i am particularly interested in hearing from MichaelFL, King and Jimmy B



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CLPrice31's picture
Replies 16
Last reply 7/19/2011 - 6:32pm

After two fairly invasive surgeries since January of 2011, I have had a love/hate relationship with my new body. There's no hiding these battle wounds. A part of me knows that I should be proud of my scars, they show that I am a fighter. Another part of me just wants to be a 24 year old girl who hasn't experienced a true life crisis...

Back in April when I was really suffering from some self esteem issues, a fellow melanoma warrior sent me this great quote that I thought others might appreciate reading:

"On the girl's brown legs there were many small white scars. I was thinking, Do those scars cover the whole of you, like the stars and the moons on your dress? I thought that would be pretty too, and I ask you right here please to agree with me that a scar is never ugly. That is what the scar makers want us to think. But you and I, we must make an agreement to defy them. We must see all scars as beauty. Okay? This will be our secret. Because take it from me, a scar does not form on the dying. A scar means, I survived." -from Little Bee by Chris Cleave

Now, even when people make comments about my scars, I remind myself of this quote. A scar does not form on a dead body. My body forms scars. I am surviving. That makes accepting my new body a whole lot easier...

I hope this will help someone else accept their battle wounds, too.

"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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NicoleinVA's picture
Replies 10
Last reply 7/19/2011 - 3:25pm



Let me start by saying how thrilled I am to find this community and all your insight.  As is says above, I am new to melanoma and very scared.  I am a 44 year old female with very few moles, however I did my share (and more) of sunbathing in my youth as well tanning beds for a 'heathly glow'..what was I thinking.  I recently me with a surgical oncologist after 3 months, with 3 very different patholgy reports.   I had a I  I ha

d I had a punch biopsey of a re-occuring mole (was removed in 2005 and classified as atypical) in April 2011 and was sent to plastic sugeon for a 2mm excision in May 2011, who sent his biopsey out to pathology.

This is where the nightmare started as there has been such a disparity in pathology reports (3 reports with everything from atypical nevi (Univ of VA), malignant melanoma in situ (Dominion) to malignant melanoma w/signs of early lymphatic involvement (Bon Seours)).   I cannot believe that the pathologists are looking at the same slide and can’t agree to the same diagnosis.  Is this common?  The site as .8 mm, with clear margins, no ulceration and now classified as stage 1a pending next surgery.  I've decided, with advice from surgical oncologist, it would be prudent for me to follow an aggressive approach because of all the unknowns.

I will be having a wide excision done by the surgical oncologist; a plastic surgeon will do skin graph on my leg (calf area) and then a sentinel lymph node biopsy will performed by a radiologist during surgery as well.  They have scheduled a PET scan, as well as blood work/chest x-ray.  Surgery is not set date yet as I have to get on both doctors schedules. I am trying to optimistic that this has not spread or is early, but it is still an emotional rollercoaster.  The recovery due to skin graph is scarring me too.

Any and all comments, experiences and suggestions would be greatly appreciated. 

Many thanks,


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