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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mclaus23's picture
Replies 3
Last reply 3/1/2013 - 12:41pm
Replies by: Tina D, mclaus23, susanr

Hi All,

Has anyone had or known of anyone having an adrenal tumor biopsied that is relatively hard to get to?
All posts will help!!

Thanks!
Maggie

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Carole K's picture
Replies 2
Last reply 2/27/2013 - 8:16am
Replies by: susanr, Carole K

I will try to be in chat tonight by 8 PM. However, I am watching my grandaughter and hopefullly she will go to bed by then.  If not, I will see you later.  Look forward to seeing you.

Love and Light

Carole K

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bikerwife's picture
Replies 3
Last reply 2/26/2013 - 7:39pm

Gamma knife on Feb 4th for mets on brain again on Feb 18th and final one on March 13th very small size of pin heads. No problems so far. He starts abaraxene on March 4. Still showing some response to zelobraf. We are very nervous.

What God leads u to he will. Lead you through

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fdess056's picture
Replies 2
Last reply 2/26/2013 - 2:30pm
Replies by: awillett1991, POW

Has anyone had Zelboraf and Zelboraf at the same time?  I completed Yervoy last spring and have ben on Zel for 7 months now.  Onc wants to keep me on Zel and add Yervoy.  I am considered a partial responder to both  Any info or experience would be appreciated\Thanks

FrankD Brooklyn

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randallgford's picture
Replies 2
Last reply 2/26/2013 - 2:10pm
Replies by: WendyPam, POW

Well tomorrow is D-day with Pet scan and Brain mri results. The great news is we have a consultation with

Moffitt Center in Tampa on Thursday so I can bring them the scans and discuss Oncologists plans with them

and they can either bless them or if clinical trial etc. is in order we can discuss that. Feeling hopeful, thanks

for encouragement and advice and now I feel like Im doing all I can. I have stacks of research, most originated

from this site, it is such a gift for melanoma patients and their families.

Never give up!

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AllyNTAus's picture
Replies 7
Last reply 3/2/2013 - 9:20pm

Hi everyone,
Looks like my time on Dabrafenib monotherapy might be coming to an end, my recent gallbladder met has now been closely followed by a small met behind my left eye (hopefully starting a short course of radiotherapy later this week to try and deal with this).

My doctor has advised me that there is a slot opening up in the Novartis combi trial that he would like to try and get me into, I am very keen as I think adding the MEK inhibitor might help with the apparent resistance issue and give me some more time. I am aware the study is pretty intense in its time demands but I am ok with dealing with that.

I am interested in knowing how anyone is finding the drugs in terms of any side effects and effectiveness, and how long people have been on the treatment without progression in their disease.

Thanks,
Ally

A bad day's fishing beats a good day's work everytime

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Bunmom's picture
Replies 6
Last reply 3/2/2013 - 8:47pm

I had a 0.97 mm, Clark's IV removed 3 weeks ago, and followed up with wide excision and SNL. SNL showed micromets (0.1mm) in one node. I don't see the melanoma specialist till Wednesday but am looking at options he may suggest. The surgeon told me complete lymph node removal does not show a better outcome, and has some side effects. But I see that a lot of people have this done. Just having the SNL surgery really made me swell and I'm still very sore 2 weeks post op. 

Does anyone know the current recommendations? Axillary radiation? 

I'm looking at Interfueron as well, but was told by the oncologist that it only works 5% of the time. I guess I'll look at clinical trials, then? 

Does anyone just leave it all alone and hope it's all been removed? 

Not sure what to do. 

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BernieB's picture
Replies 1
Last reply 2/25/2013 - 11:18pm
Replies by: Janner

My apologies, this post may appear twice

I had an inguinal lymphectomy 1/30, one positive node, after a primary 7 yrs ago. Now not a month later there is a "lump"  a few inches from the surgery site, was not there before, pretty scary, I am getting it checked out tomorrow. Any thoughts, BernieB

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Gene_S's picture
Replies 1
Last reply 2/25/2013 - 11:21pm
Replies by: Janner

I listened to a program today (Cancer Summit Program) that said the best color for cancer patients to have in a room to improve them psychologically is the color mauve. It is more comforting.

White or blue are what most hospitals use which is really not the best of colors for their cancer patients.

Just thought someone might be helped from this since they were talking about many cancers not just melanoma.  If a simple color can change how we feel psychologically it might be worth a try.

Judy (loving wife of Gene Stage IV and now NED)

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Back in 2004 when I was first diagnosed with stage 2 acral melanoma, there really was no treatment options. I was NED until last year when it reappeared in 2 lymph nodes. I had surgery performed and now it has spread to the lungs. I am currently on ipilimumab (not BRAF or C-KIT mutant) and wondering about any new research on betulinic acid? It was first documented around 1997 to trigger human melanoma cell apoptosis in melanoma transfered into mice. I took Birch Bark capsules daily in 2004 as the oncologists didn't offer anything for stage 2. I was NED for 8 years so who knows??

I just did some Web searching and found some more research papers in 2005 and 2009. I see MDAnderson was active in the research a few years ago.  Has anyone got any insight or experience on this product derived from Birch Bark?

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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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