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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tony9511's picture
Replies 1
Last reply 2/25/2013 - 9:18pm
Replies by: Janner

Thanks to all especially Janner.  I went to see my surgeon today.  I was previously dxed with melonoma stage 2 clark level 4 last May and had the wide area excision.  Well unfortunately it came back.  The surgeon has scheduled a PET scan, and another Wide Excision in March....Unless the results from the pet scan come back really bad.  Thanks Janner and others your advice on what would happen next is exactly what happened. 

Tony

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Sdegonge's picture
Replies 3
Last reply 2/26/2013 - 8:57pm
Replies by: Janner, Sdegonge

I have 100+ moles and freckles on my body as a pale skinned blonde. I use sunblock now but growing up I tanned/sunburned myself. I have had numerous moles removed and the report comes back as dysplastic Nevus but this last biopsy showed an atypical melanocytic proliferation. The microscope description says "there is an irregular proliferation of melanocytes discontinuously and irregularly spaced. Occasional cells show large nuclei with a big nucleolus and coarse chromatin. There are epidermal melanocytes"

I did have a re-excision and it was completely excised. My concern is, was this skin cancer or a pre-cancer? I have been going for skin check every 6 months which typically results in a few biopsies. Should I switch to a demonologist who specializes in skin cancer? Should I be worried with so many moles and this new type growing? Any advise is appreciated as this is a new diagnosis for me and I want to do all I can to be proactive.

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I have 100+ moles and freckles on my body as a pale skinned blonde. I use sunblock now but growing up I tanned/sunburned myself. I have had numerous moles removed and the report comes back as dysplastic Nevus but this last biopsy showed an atypical melanocytic proliferation. The microscope description says "there is an irregular proliferation of melanocytes discontinuously and irregularly spaced. Occasional cells show large nuclei with a big nucleolus and coarse chromatin. There are epidermal melanocytes"

I did have a re-excision and it was completely excised. My concern is, was this skin cancer or a pre-cancer? I have been going for skin check every 6 months which typically results in a few biopsies. Should I switch to a demonologist who specializes in skin cancer? Should I be worried with so many moles and this new type growing? Any advise is appreciated as this is a new diagnosis for me and I want to do all I can to be proactive.

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I have 100+ moles and freckles on my body as a pale skinned blonde. I use sunblock now but growing up I tanned/sunburned myself. I have had numerous moles removed and the report comes back as dysplastic Nevus but this last biopsy showed an atypical melanocytic proliferation. The microscope description says "there is an irregular proliferation of melanocytes discontinuously and irregularly spaced. Occasional cells show large nuclei with a big nucleolus and coarse chromatin. There are epidermal melanocytes"

I did have a re-excision and it was completely excised. My concern is, was this skin cancer or a pre-cancer? I have been going for skin check every 6 months which typically results in a few biopsies. Should I switch to a demonologist who specializes in skin cancer? Should I be worried with so many moles and this new type growing? Any advise is appreciated as this is a new diagnosis for me and I want to do all I can to be proactive.

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I have 100+ moles and freckles on my body as a pale skinned blonde. I use sunblock now but growing up I tanned/sunburned myself. I have had numerous moles removed and the report comes back as dysplastic Nevus but this last biopsy showed an atypical melanocytic proliferation. The microscope description says "there is an irregular proliferation of melanocytes discontinuously and irregularly spaced. Occasional cells show large nuclei with a big nucleolus and coarse chromatin. There are epidermal melanocytes"

I did have a re-excision and it was completely excised. My concern is, was this skin cancer or a pre-cancer? I have been going for skin check every 6 months which typically results in a few biopsies. Should I switch to a demonologist who specializes in skin cancer? Should I be worried with so many moles and this new type growing? Any advise is appreciated as this is a new diagnosis for me and I want to do all I can to be proactive.

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jessebug99's picture
Replies 1
Last reply 2/25/2013 - 10:08pm
Replies by: awillett1991

I have been on Zelboraf for 9 months and am NED as of my last scans in Dec.; I was just wondering if anyone else has experienced recurring side effects of the Zelboraf.; I seem to have times that I do really well with minimal problems, but then I start feeling really faigued, headaches, and joint pain again.

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I have been on Zelboraf for 9 months and am NED as of my last scans in Dec.  I was just wondering if anyone else has experienced recurring side effects of the Zelboraf.  I seem to have times that I do really well with minimal problems, but then I start feeling really faigued, headaches, and joint pain again.

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I have been on Zelboraf for 9 months and am NED as of my last scans in Dec.  I was just wondering if anyone else has experienced recurring side effects of the Zelboraf.  I seem to have times that I do really well with minimal problems, but then I start feeling really faigued, headaches, and joint pain again.

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Janet Lee's picture
Replies 5
Last reply 3/4/2013 - 2:22pm
Replies by: Tim--MRF, awillett1991, POW

I've seen some posts here that people have been treated with Zelboraf even if they didn't have the V600e mutation (they had V600K or V600-other-than E). Could you share with me how you got that treatment? My husband tested positive for BRAF, but he is V600R and the insurance company denied him the treatment. It was denied twice, and a third appeal has been sent. I've tried Genentech's various avenues for assistance, but even they won't help. It seems if your household earns > $100,000 per year you are not worthy of help.

Thanks.

Janet

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iversens's picture
Replies 7
Last reply 2/26/2013 - 6:06pm

Hi,

I'm a new member and found this site while doing research on Melanoma.  Two weeks ago my wife's father was diagnosed with Stage IV Melanoma.  It's hitting the family hard since my wife's mother just passed away 8 months ago due to complications with diabetes.  I'm trying to help by doing as much research as I can.  Any suggestions or advice is much appreciated.

Here is some of the info I have on his status (I apologize if I'm too specific):

Approx 6 months ago my father-in-law found a lump in his upper arm/tricep.  His GP misdiagnosed it as a fatty lump and sent him to physical therapy.  The PT did hard tissue massage on the "lump" for several weeks as it kept growing and getting more painful.

Around 3 weeks ago his GP sent him to get a biopsy which is when we found out he had melanoma.  He's Irish with a history of skin damage and multiple mole removals.

Two weeks ago he went through MRI, CT and PET scans.  They showed the ~7cm x 6cm tumor in the arm, a 6cm x 5cm tumor in the liver and a couple very small possible tumors in the lungs.  The brain MRI was clear.

He met with a surgeon to remove the tumor in his arm and a local oncologist and radiologist.  The radiologist gave him the Stage IV diagnosis and said things look dire.  Needless to say my wife and her dad were stunned.

Last Tuesday his surgeon successfully removed the tumor from his arm which has significantly reduced his pain.  Good news!  The surgeon showed us pictures of the tumor and it had grown to 14cm x 8cm in a week.  Bad new.

He's recovering quickly from his surgery and should find out the results of the sentinel node biopsy tomorrow.

His oncologist has ordered a more specific CT scan of his liver and lungs this Wednesday to confirm the tumor.  I'm afraid the oncologist isn't being clear enough about what this means.  My father-in-law thinks he's all better.  He has a follow up appt. next Monday to go over the results.  I wish things would move faster.

The Dr. said if the tumor is confirmed the standard care is Yervoy.  Does anyone have experience with this med?

Thanks in advance for any help.

Scott

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bigb0624's picture
Replies 8
Last reply 2/27/2013 - 10:50am

Tomorrow i have my 2nd of 4  IPPI infusions.  I had zero side effects from the first infusion but i understand that is normal and the side effects start with 2 through 4.  I still have faith in my Oncologist that this is the right approach even though i was still responding to Zelboraf.

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Anonymous's picture
Anonymous
Replies 1
Last reply 2/26/2013 - 7:11am
Replies by: G-Samsa

http://www.medscape.com/viewarticle/779820

Major Advances in Melanoma Set for AAD Meeting

 

 

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Valentine's picture
Replies 1
Last reply 2/25/2013 - 11:16pm
Replies by: Gene_S

Hello all,

Just thought I would pop in today to say that I am thanking God for 3 years with no evidence that the cancer has returned. I will tell everyone that I know today, but the people who frequent this board are the ones who really understand what it means. I don't post often, but lurk daily. Thank you for the support.

Cheri

stage 3b - 3 years NED!

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lou2's picture
Replies 2
Last reply 2/24/2013 - 8:58pm
Replies by: Janner, Anonymous

Isn't it thought that melanoma is not sun related?  Because it shows up in places that may not see sun?

But look at figure 1 in the CDC report on cancer incidence:

http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6207a1.htm?s_cid=mm6207a1_e

They show the top ten types of cancer in various racial/ethnic groups.  The only group that has melanoma in the top ten are the white folks.  All the other groups do not, and these are all people who tend to have darker skin tones.

 

This is very puzzling.  Is there some other explanation, like maybe certain genetic configurations that differ among these groups?

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