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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lovingwifedeb's picture
Replies 6
Last reply 9/21/2010 - 12:15am

September 19, 2010

   

My husband and I took to heart the recommendation to find an oncologist in our area who specialized in melanoma and was willing to “jump into the boat with him” so to speak. Well, it ended up being the very same doctor that wanted my husband to join his melanoma cancer vaccine trial and broke to him the news about percentages and so on… Portland is not that big.

 

My husband had to admit to this doctor that he had him on the floor by the time he left his office on that first visit but admitted he has learned a lot since then and that he had lots of questions to ask him now that the shock was over. This doctor was very willing to work with my husband and answered all his questions.

 

My husband, Bob is stage 3c, if you remember and had only 3 choices of treatment after his surgery. The metastatic tumor that was located in his leg/groin was rather large, almost 3 inches in length. Although the primary melanoma was never found, one theory of the doctor’s is that my husband’s immune system destroyed it, another theory is that the primary was located in the tumor itself. No proof, no one knows for sure. So, for now some of the cancer cells “could” have escaped from the metastatic tumor in his leg/groin (or not) and until those cells get large enough to be picked up on a scan we will not know if he ever moves into stage 4, which I hope never happens. But if it does… then other therapies would then apply. For now his treatment choices are

1.     Interferon

2.     Cancer Vaccine Trial / 2 people get the drug – 1 person gets a placebo

3.     Do Nothing, Watch and Wait

 

I know my husband well enough to know that his decision was not made lightly. Most important decisions we have made together take great discussion or angst over. Both of us are alike in this so I know the process was difficult for him but I also know it was about quality. It was a difficult choice and a personal choice and it was strictly his choice. My husband has decided to watch and wait. He feels that this choice was necessary to protect his immune system as it stands today. He thinks if his body’s immune system destroyed the primary and the doctors couldn’t find it then this decision has to work in his favor for now. He does not believe in destroying his own immune system to the point that it has to be built back up again. This oncologist will keep a close eye on my husband with regular scans, exams and blood work, every 3 months, then every 6 months then once a year. I have also asked my husband to find a doctor/naturopath to guide him into stronger nutrient care. Anything that would help build up his immune system even more and bring greater strength and better health. Maybe between the two doctors and Bob’s determination we can turn this around for a longer period of time. I am here as his caretaker, his wife, the protector of his heart, and in whatever way I can support him.

This will be my last post in this group for now unless our situation changes (which I hope it doesn’t). Thank you for your support and your suggestions along the way. I have learned a great deal from those of you who have responded to me personally and to my postings. I have joined another group that might better fit my needs as caretaker and writer. As I believe I will be always living with the “Monster Under the Bed” I will be continuing to write about my fears and emotions. If you would still like to follow me please use the links below.

 

I have encouraged my husband to write about his own fears and to begin to post them to the MRF site and ask his own questions directly to you as I’m sure he would like to know if anyone out there has suggestions other than chemical. Look for him soon he will post under the name "The Gambler".

 

If you would like to leave Bob a message please send one here:

bob.rogers2010@gmail.com

 

 

If you would like to follow our family blog page please go here:

http://redesign08.blogspot.com/

 

 

If you would like to follow me in the  “Caregivers” section, the Cancer Survivors Network / the American Cancer Society website please follow this link:

http://csn.cancer.org/forum/138

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bcl's picture
Replies 12
Last reply 9/23/2010 - 12:46am
Replies by: bcl, Jim in Denver, Anonymous, Tim--MRF, paleskinisin, killmel

Cass is looking for a follow up to plx -I found this comment by Unite in the archives -does anyone know how close these combos are to trial?

 

Posted by Unite at 05:50 on Fri, Jul 23, 2010    [Show other posts by Unite]

In Reply to: Re: confused about inhibitors by Tom posted at 06:07 on Thu, Jul 22, 2010

Mek inhibitors have worked in Braf inhibitor delayed failures. Try the MEK or ipi trials next. I think ipi and MEK or BRAf inhibitor combination will ultimately work for many patients

(BMY is developing a BRAF which will probably be tried with ipi or like drug). Ipi and chemo seems to also work for some patients but I am not seeing a lot of trials for this combo.

 

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Nicky's picture
Replies 10
Last reply 6/15/2012 - 1:32am

I was reading a research article about a group of women workers who worked in the same building.  Many of them were diagnosed with breast cancer and the only similarity  they had were that they all had the mouse mammary virus.

It is also interesting that the new vaccination against a particular type of Human Papillimova Virus strain (HPV is a common virus which quite a number of the general population have) will prevent Cervical Cancer.

It may be a LONGSHOT but you also wonder if Melanoma could also be triggered/caused by a common virus and could be lying dormant with some of the culprits being the most common viruses for example like HPV or the cold sore virus.

I always thought it was odd that half my school sports team from 20 years ago ended up getting melanoma and my coach died of it later in life but it didn't occur until 20 years after.  I know a few of us had mononucleorosis (glandular fever) which was quite contagious at the time.  

As a survey, (anonymous if you wish), every remember catching a particular  virus, past or present?

 

 

 

 

 

 

 

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alleycat's picture
Replies 4
Last reply 3/20/2011 - 9:19pm
Replies by: LynnLuc, Soupison, Nicky, molly

My husband was diagnosed with Desmoplastic Melanoma (DM) on the crown of his head, which is a rare type that affects anywhere from 1% - 4% of melanomas depending on what you read.  It also frequently recurs locally.  As such, the doctor says that the melanoma does not behave in the same ways as other types.  DM has no color usually, his was just a bump on his head.  As such, it usually goes undiagnosed and can get quite large before it gets recognized.  We thought it was a cyst.

He had surgery 2 weeks ago to remove 2 cm margin around the site, replacing the tissue with a skin graft.  They did not do lymph node biopsy because of the location of the lymph nodes, and the percentage of lymph node involvement with DM is only 7% usually.   We got the pathology report back.  The margins were clear, but I'm concerned about the other things I'm reading in the path report.  When I look them up on the internet, most of the features look very negative.  The doctor says that DM doesn't follow the normal course, and I hope he's right.  Anyone know about this?  

Here are the results:

Top of scalp, excision:

Histologic type:  Malignant melanoma, desmoplastic type, sectional edges involved comment.

Clark's level:  V

Breslow depth:  At least 0.5 cm

Vertical growth phase:  Present

Ulceration:  Absent.

Lymphovascular invasion:  Absent.

Perineural invasion:  Present

Tumor infiltrating lymphocytes:  Not brisk.

Regression:  Absent

Mitotic figures:  Up to 5 per mm squared

Tumor micros-satellites:  Absent

Precursor lesions:  Absent

"The lesion extends to and involves the deep inked margin and is <1 mm from the 12 o'clock inked margin.  The 3, 6, and 9 o'clock margins appear clear by >1.0 cm.  The separately submitted en face margins show multiple foci of atypical intraepidermal melanocytic proliferation which may represent a field effect phenomenon."

Pathologic stage:  pT4a, pNX, pMX

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My husband was diagnosed with Desmoplastic Melanoma (DM) on the crown of his head, which is a rare type that affects anywhere from 1% - 4% of melanomas depending on what you read.  It also frequently recurs locally.  As such, the doctor says that the melanoma does not behave in the same ways as other types.  DM has no color usually, his was just a bump on his head.  As such, it usually goes undiagnosed and can get quite large before it gets recognized.  We thought it was a cyst.

He had surgery 2 weeks ago to remove 2 cm margin around the site, replacing the tissue with a skin graft.  They did not do lymph node biopsy because of the location of the lymph nodes, and the percentage of lymph node involvement with DM is only 7% usually.   We got the pathology report back.  The margins were clear, but I'm concerned about the other things I'm reading in the path report.  When I look them up on the internet, most of the features look very negative.  The doctor says that DM doesn't follow the normal course, and I hope he's right.  Anyone know about this?  

Here are the results:

Top of scalp, excision:

Histologic type:  Malignant melanoma, desmoplastic type, sectional edges involved comment.

Clark's level:  V

Breslow depth:  At least 0.5 cm

Vertical growth phase:  Present

Ulceration:  Absent.

Lymphovascular invasion:  Absent.

Perineural invasion:  Present

Tumor infiltrating lymphocytes:  Not brisk.

Regression:  Absent

Mitotic figures:  Up to 5 per mm squared

Tumor micros-satellites:  Absent

Precursor lesions:  Absent

"The lesion extends to and involves the deep inked margin and is <1 mm from the 12 o'clock inked margin.  The 3, 6, and 9 o'clock margins appear clear by >1.0 cm.  The separately submitted en face margins show multiple foci of atypical intraepidermal melanocytic proliferation which may represent a field effect phenomenon."

Pathologic stage:  pT4a, pNX, pMX

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paleskinisin's picture
Replies 9
Last reply 9/21/2010 - 12:50pm

I'm wondering if there are any AZ patients on here that are later stage.  I'm stage IV and looking at treatment options.  I've been battling for 4 years and feel as though I do have a good team of docs, but I'm looking for second opinions for treatment and just wondering where the AZ folks go for treatment.

Anyone been through treatment here in AZ?  Anyone have a good team of docs to recommend?  Anyone been to Cancer Centers of America that just opened in AZ?

Thanks,

Tina

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King's picture
Replies 2
Last reply 9/18/2010 - 7:07am
Replies by: Rocklove, JuleFL

I know Sharon in Reno has been in my thoughts and prayers since her post on the 10th.  I hope that Hospice is doing their job and that Sharon is comfortable and at peace.  Also, thinking about her family and friends.

 

Stay Strong
King

Stage IV 7/05 LIver mets

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Anonymous's picture
Anonymous
Replies 8
Last reply 9/22/2010 - 9:54pm
Replies by: King, Lori C, dian in spokane, Rocco, jag, Anonymous, Terra

Anyone hear from Rocco. I think that he had scans 2 weeks ago and he did not post results. So worried about him.

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Brandi's picture
Replies 5
Last reply 10/13/2010 - 6:01pm
Replies by: Brandi, EricNJill, Anonymous, washoegal

Hi everyone,

I am new here I just went to a surgeon today who wants to do a WLE and SLN on me for a spitzoid melanoma that I had removed on my calf. I also have an in situ on my rib cage he wants to do a larger excision on this one as well. My patho is as follows: calf: spitzoid melanoma 1.6cm, margins clear, mitotic rate 0, lymphovascular 0, lymphocytic ifiltrate non brisk, ulceration absent, regression absent. He agreed that the patho results look good and said there is a 10% chance my lymph nodes were affected. Rib cage melanoma in situ original amount taken was .5cm which from what I have read is the recommendation. This doc is supposed to an expert on melanoma he is at UPMC hospital in Pittsburgh. I am just confused as to why he needs to take more on the rib cage. I also want to know if it is standard procedure from what you all know to have the SLN done right off the bat? Thanks for any info you all have.

Brandi

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New to this bulletin board. Anyone else out there with 100+ mets in their leg on a Braf trial? This is my third trial. Already went through a MART-1 gene therapy/vaccine/IL2 and 4 rounds of ipi. Would love to hear some feedback - positive or not so positive.

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JuleFL's picture
Replies 30
Last reply 9/30/2010 - 12:36pm

My sweet husband, Cal, a former Navy and airline pilot, is now flying in Heaven.  I thank all of you for the information and inspiration that we have received over the last 10 months of this grueling journey.  I wish all of you hope, love and healing.

JuleFL (Cal's loving wife)

Oh, I have slipped the surly bonds of earth and danced the skies on laughter-silvered wings.........put out my hand and touched the face of God. John Gillespie Magee, Jr

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Nebr78's picture
Replies 2
Last reply 9/17/2010 - 10:45pm
Replies by: bcforce, Anonymous

Is there anyone who has serious heart disease and have taken this   Ipilimumab?  Termodar did no good.  I took something before Termodar and it caused a lot of chest pain.  Dr. don't know what to give me.  I can't get into a C. Trial.  Probably too old.   Male 78  Maybe my Melanoma 4 is not bad enough.  I have lump in front of ear, under skin 1" diameter.   One on lymph node near arm pit and spot in lung and spine.  All were growing some last ct scan.

I will not change doctors. This is the 2nd one and cancer treatment seems to be a guessing game anyway.  What are some of the costs of this Ipil?  Conservatine me will not spend what we have chasing all around for a cure.    From Nebraska

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paleskinisin's picture
Replies 15
Last reply 10/3/2010 - 10:58pm

I have been battling this beast for 4 years.  Initial year, 2006, I had mel on back and 3 positive sentinal nodes.  2008 one met to lung - met removed via surgery and 1 year of leukine.  This year kidney removed with mel tumor.  September CT scan shows 3 tumors on lung - all less than 8mm.  My dr., Dr. Evan Hersh at the Arizona Cancer Center is recommending high dose IL-2.  I am hoping to get information from those who have gone through this treatment.  Any suggestions/help you can provide would be greatly appreciated.

Thank you,

Tina

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Shelby - MRF's picture
Replies 1
Last reply 9/22/2010 - 12:46pm
Replies by: ValinMtl

Together with the Moffit Cancer Research Center and Massachusetts General Hospital, the Melanoma Research Foundation presents a day of melanoma education dedicated to melanoma patients and the people who support them.

 

LIVING WITH MELANOMA - SCIENCE TO SURVIVORSHIP

Saturday, Oct. 16, 2010 at the H. Lee Moffitt Cancer Research Center in Tampa, FL

Friday, Oct. 22, 2010 at the Massachusetts General Hospital in Boston, MA

 

Symposia are FREE to patients, caregivers, family members, and health care providers.  You can register on our website under Programs -- Educational Programs -- Upcoming Educational Programs.  Lunch will be provided. 

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