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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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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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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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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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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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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betsy's picture
Replies 7
Last reply 2/25/2013 - 7:09pm
Replies by: Anonymous, thrashter, MaryD, betsy, kylez, Becky

My husband was diagnosed stage 3c nearly 4 years ago. After a year of interferon treatment, he is nearly 4 years NED. We attribute this largely to finding the right doctors immediately, and an aggressive melanoma surgeon.
We are now faced with the possibility of changing to kaiser insurance. I know we have to use kaiser doctors only, if that happens. Is anyone here a kaiser patient in california? We're near San Francisco.
Thanks.

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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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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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shep's picture
Replies 8
Last reply 2/25/2013 - 5:09pm
Replies by: JerryfromFauq, Anonymous, shep, NYKaren, POW

my daughter's 4 lymph nodes found to be sentinals two each under her arms were returned negative!!! her WLE from primary and 4 other dysplastic nevi all returned benign also. she was diagnosed melanoma positive on 1/22, had her SLNB and WLE surgeries on feb 7 and drove with us 5 1/2 hours south the next morning to help coach her sister thru her first child's birth... very proud of her. we were so worried because the radioctive isotopes only took 15 minutes to reach the sentinals. results came back on tues 2/12 and i burst into tears at the news. we are so thankful and am wishing well to all in this forum who have helped me get a handle on this disease. now she realizes how important it is to keep up on her nevi conditions.                                

                                                                 

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mrsmarilyn's picture
Replies 4
Last reply 2/25/2013 - 1:34pm
Replies by: susanr, POW, jmmm, Carole K

HI - My brother has been fighting Mel for 11 years - and now has one large (over 2 cm) in brain, in between lateral ventricals, bleeding.  At Jax Mayo, they are advising WBR and then starting Zelboraf in a week.  Does anyone have experience with WBR followed by Zelboraf.  Has anyone had one in ventricals and how was treated?  We are debating of passing on WBR and going direct to Zelboraf- but Mayo feels WBR will stop bleeding and shrink enough to allow ventrical fluid to flow again - and then follow up with Zelboraf and targeted radiation in Pittsburgh.

 

Any thoughts or advice is deeply appreciated.  Thoughts and prayers to all!  (He is BRAF K has responded well to zelboraf before)

Thank you,

Mrs Marilyn

Sister of Gary (Stage iv)

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Anonymous's picture
Replies 8
Last reply 2/25/2013 - 10:55am
Replies by: Anonymous, Janner

http://www.ncbi.nlm.nih.gov/pubmed/7272967

 

Level II--19%, 0.5 mm--18%

 

Wow, I thought it was way less than that.  Scary.

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