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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boomer4676's picture
Replies 7
Last reply 8/26/2013 - 10:25am

Hello, I am trying to find out information about spitz nevi in children. 
In April, my then 5 year old son had what looked like a sticker on his shoulder. Because we live out in the country and he is 100% boy, it wasn't out of the norm for him. We put drawing salve and a bandaid on it and waited for the sticker to come out, only it didn't. 
Over a few short days, the sticker began to look like a wart. We treated it with Compound W. Needless to say, he is way too much boy for a small patch to stay on for the amount of time required. We spoke to our pharamsist, they reccommended freeze away. The "wart" began shrinking only to spring up again. 

 

We took him to our local doctor to have it removed. He told us it was not a wart and cut out 1mm on all sides and 1/2 cm down to remove the "wart" and sent it to pathology. After waiting almost an entire month and three pathology reports, we were told it was melanoma. Finally we were sent to Denver Children's. 

 

We had to wait almost 3 weeks for Children's get obtain the slides. They were hoping to find the lesion itself but did NOT ever find it...how nice. Our local doctor's office was SLOW getting anything sent to Denver even though they promised my son's information would be there for the appointment. Once the doctor obtained the slides and reviewed them, we were told it was a spitz nevus. 

The Denver doctors would like to cut it open again. I am simply confused as to of WHY. His surgery is set for Friday and should last an hour and a half. I am not feeling very comfortable with the opperation. Has anyone else dealt with this? 
I have read some posts about spitz nevi in children but no one has ever had them removed and then removed again! How will they know where to even opperate?!?! 

 

Thank you! 

Seriously frusterated mommy. 

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I just found out a week ago that Scott's life insurance policy has an accelerated benefit.  You can take half of the policy money up front and then the remaining half is paid out to your beneficiary upon your death.  I thought I'd share the info because I ran into it on a whim and would have never known.  No social worker, HR person or otherwise had mentioned it.  It appears that most policies have this.  If you are interested, find your policy and read up.  

The money could be a great help for travel to trials, paying cobra or whatever, you can even take a vacation.  They don't care what you do with it. It's required that your physician state that you have 12 months or less to live.  But there is no pay back required if you don't die. 

Just thought I'd let everyone know and hopefully it can help someone else out. 

Lisa (Scott's wife)

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Anonymous's picture
Replies 5
Last reply 8/25/2013 - 4:11pm
Replies by: Anonymous, JerryfromFauq, POW
Research August 22, 2013
 

 

 

Recent Childbirth Is an Adverse Prognostic Factor in Breast Cancer and Melanoma, but Not in Hodgkin Lymphoma

 

Eur. J. Cancer 2013 Aug 06;[EPub Ahead of Print], H Moller, A Purushotham, KM Linklater, H Garmo, L Holmberg, M Lambe, D Yallop, S Devereux

 

 

 

 
TAKE-HOME MESSAGE

 

Prognosis is poor in women with a pregnancy-associated breast cancer or melanoma (pregnancy-associated cancer defined in this study as childbirth within 1 to 5 years prior to the cancer diagnosis). The authors suggest cause independent of tumor stage, possibly a biological mechanism, is at play.

 

ABSTRACT

Background: The relationship between gestation, childbirth and cancer prognosis is unknown for most cancers (e.g. Hodgkin lymphoma), whereas a body of evidence exists for melanoma and breast cancer.

 

Methods: The national cancer registration and hospital discharge data for women in England (1998-2007) were linked, and the records for Hodgkin lymphoma, melanoma and breast cancer were indexed as to whether women had delivered a child in separate time periods prior to their cancer diagnosis. Survival analyses were conducted in order to characterise prognosis in relation to childbirth, with statistical adjustment for age and (where possible) stage.

 

Findings: For melanoma and breast cancer, survival was strongly reduced in women who gave birth in the year prior to cancer diagnosis. The age-adjusted hazard ratios (HR) with 95% confidence intervals (CI) were 2.06 (1.42-3.01) for melanoma and 1.84 (1.64-2.06) for breast cancer. The associations were only slightly attenuated by further adjustment for tumour stage. For breast cancer, the excess death rate in women with a recent childbirth peaked at 2years and remained elevated for 6 to 8years. Previous childbirth had no overall effect on the outcome of Hodgkin lymphoma.

 

Interpretation: Melanoma and breast cancer prognosis are adversely affected by recent gestation and childbirth in a way that is not due to stage of the cancer, but rather to inherent biological properties of the tumours. Possible biological mechanisms include immunosuppression (melanoma), the hormonal milieu in gestation and a tumour promoting microenvironment post-partum (breast cancer).

European Journal of Cancer
Recent Childbirth Is an Adverse Prognostic Factor in Breast Cancer and Melanoma, but Not in Hodgkin Lymphoma
Eur. J. Cancer 2013 Aug 06;[EPub Ahead of Print], H Moller, A Purushotham, KM Linklater, H Garmo, L Holmberg, M Lambe, D Yallop, S Devereux

The publisher has made this article available for free until 9/5/2013 12:00:00 AM .

Access this article now

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/25/2013 - 4:05pm
Replies by: JerryfromFauq, POW

Hi all, I am currently 32 years old, and I was almost four years past my initial diagnosis of Stage IIIa malignant melanoma, when I was diagnosed with a second primary in March of this year at 31. I had another WLE done, though with much smaller margins as this was a much smaller mole and Stage I. My concern (among many) is that I now have this white spot that has spread across the pink of the scar, and if it is pressed, I get a sharp pinching pain. Has anyone else had anything like this? It has been about 5 months since the WLE, so I'm not sure if it's just a symptom of healing, or if I should be concerned.

Additionally, I am having a really hard time with lymphedema right now, but not the way I normally present. This time, most of my leg is actually LESS swollen then other flare ups, except the top of my foot and my ankle. I also get a sharp burning pain up the top of my foot into my shin when I point my toe, and if I press on the front of my shin, it feels like it is deeply bruised. I had an ultrasound for DVT, which thankfully was negative, also no cellulitis, so that is good, but no one seems to know what could be the cause of the pain. I have been resting on the idea that perhaps it's just sensitivity caused by the swelling on the top of the foot, but if anyone has any insight, it would be greatly appreciated!

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kerstinmagnuson's picture
Replies 4
Last reply 8/25/2013 - 3:43pm

My dad has stage IV melanoma with involvement in the brain, liver, and lungs. In Nov. 2011, he received the first diagnosis of melanoma from a node in his belly button. It hadn't spread at that point, but a scan in the summer of 2012 revealed melanoma in one lymph node. The nodes in that area were all removed, but in September 2012, a scan showed that the cancer had become metastatic and was in his liver, lungs, and brain. At first, he received Ippi treatments, which were ineffective. He then had a chemo cocktail of three agents, one of which was Avastin. That was only moderately effective. He also had gamma knife surgery and radiation for his brain tumors. In May, he entered an anti PD1 clinical trial, but was just taken out of it after a scan revealed tumor growth in his lungs and brain. He is supposed to start more chemo treatment again, including an oral chemo that is supposedly more effective against brain tumors. Does anyone have any suggestions of some other treatments we could try? We are open to trying anything that might help. Thanks! 

 

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JerryfromFauq's picture
Replies 2
Last reply 8/25/2013 - 3:01pm

Is IL-2 Still Indicated for Melanoma?        

                  :   http://www.cancernetwork.com/melanoma-skin-cancer/content/article/10165/...

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

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melmar's picture
Replies 36
Last reply 8/25/2013 - 1:07pm

Thanks to all for responses to my early post, I really appreciate the help. I am wondering if any of you have done TIL and what success or side effects you have had. Thanks in advance for taking the time to respond.

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NYKaren's picture
Replies 6
Last reply 8/25/2013 - 12:07pm
Replies by: awillett1991, NYKaren, Mat, POW, Owl, King

Hi everyone,
So I just started my first dose of Tafinlar.
I'm pretty nervous and excited.

I landed in the hospital again 2 weeks ago for 4 days. I'll keep you posted.

Don't Stop Believing

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http://www.youtube.com/watch?v=lT8-mVqsyPU

New Medical Approaches to Treating Advanced Melanoma -- Sloan-Kettering

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

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brooke's picture
Replies 27
Last reply 8/25/2013 - 6:00am

Hello everyone,

My husband was newly diagnosed about 4 weeks ago with stage IIIb. A very normal looking round pink mole was removed from his back and turned out to be melanoma. After wide excision and sentinel node biopsy, the path report showed 1mm depth with widely clear margins and negative nodes. I felt very relieved until we were told that there was a small 0.6mm satellite lesion found within the biopsy site. Even though margins were clear and nodes were negative, he is still categorized Stage IIIb. 

Of course hearing those words put me into panic mode. My husband is 45 and we have a new baby and a 4 year old. Everything I've read about IIIb has me scared to death. Unfortunately, I"m one of those over analytical anxious people and find myself already planning my husband's funeral.

I've been living in this crazy world of anxiety, fear, loss of appetite  and upset stomach. I look at my young children and can only think that they'll never really know their father. 

I guess I'm telling all of this in hopes of hearing some positive stories. I know this is a very unpredictable disease and I guess I"m just reaching for some hope. I realize there is no way of knowing if the cancer will spread so I'm curious if there are people out there with similar diagnoses. Everything I read about IIIb talks about positive lymph nodes, I just wonder if his diagnosis is any more promising.

I'm also hoping for some advice from other spouses or loved ones on the best ways to cope. I've looked into counseling and my even need to start on some meds. I know I need to stay healthy in order to take care of my family.

After meeting with oncology last week, we have opted to enter the ipi vs interferon trial. We're really hoping for the Ipi and may opt out if he is placed in the interferon arm. They have also offered the 'watch and wait' option which I have to say scares me a lot. I have also asked for a re-read of the pathology by a dermatopathologist. Those results are still pending. 

Thanks so much for reading, I look forward to hearing from anyone out there.

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Shez's picture
Replies 7
Last reply 8/24/2013 - 10:43pm

Does anybody have any experience with limb perfusion chemo?

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I've told my dad numerous times to cover up if he even travels to the grocery store...he didn't listen and has photosensitivity to his face. Has anyone had this and if so how did you treat it? He will now be wearing a hat I gave him and long sleeves. I don't think he realized how harsh it is.

Thanks!
M

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Richard_K's picture
Replies 5
Last reply 8/24/2013 - 9:33pm

Last week I received good scan news but bad blood news.  My bilirubin was up and I was placed on a “holiday” from Zelboraf.  Yesterday I had blood retested locally and this morning I was told the bilirubin was back to normal, my “holiday” was over.  Whew!  Next week I will have completed 43 months on Zelboraf.

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casagrayson's picture
Replies 5
Last reply 8/24/2013 - 9:27pm

My view of the board is all messed up.   Just text ... no tables or anything.  Anyone else?

Strength and Courage,

Susan

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