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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awillett1991's picture
Replies 3
Last reply 2/28/2013 - 3:45pm
Replies by: awillett1991, POW

I'm researching Genentech trial this for a friend. It's a small phase 1 trial, side effects sound NASTY because of the MMAE, from what I can understand. Have any of you gurus out there heard anything or have any thoughts I'd really appreciate it.. This is his only option left because of the issues he has.

Thanks!

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News

Don't Trust Apps to Spot Skin Cancer
 
 

IMNG Medical Media, 2013 Jan 16, S Worcester
 

 

Journal Scans: Research

Cutaneous Side-Effects Associated With Vemurafenib
in Melanoma

 
 

Ann Oncol, 2013 Feb 13, L Boussemart, et al

Low Recurrence Rate in SLNB-Negative Melanoma
 
 

JAMA Surgery, 2013 Jan 16, EL Jones, et al

BRAF Inhibition Enhances Melanoma Antigen Expression
 
 

Clin Cancer Res, 2013 Jan 10, DT Frederick, et al

No Survival Advantage With Tremelimumab in Metastatic Melanoma
 
 

J Clin Oncol, 2013 Jan 7, A Ribas, et al
EXPERT COMMENTARY
 

 

Journal Scans: Review

Targeting BRAF in Melanoma: Biological and Clinical Challenges
 
Free Journal Content

Crit Rev Oncol Hematol, 2013 Feb 15, M Mandala, et al

Venous Thromboembolic Events Associated With VEGFR TKIs
 
Free Journal Content

Crit Rev Oncol Hematol, 2013 Jan 12, G Sonpavde, et al

Resistance to BRAF-Targeted Therapy in Melanoma
 
 

Eur J Cancer, 2013 Jan 2, RJ Sullivan, et al
 

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

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ncdaniel's picture
Replies 4
Last reply 2/27/2013 - 9:45pm
Replies by: ncdaniel, NYKaren, Tina D, POW

My wife has been fighting diahrea and not feeling well three weeks after her first treatment. Called Doctor and told to monitor her. Has any one had experience sorting the difference between viral symptoms and Yervoy reactions. They both have the same side effects and since viral things are going around how can you tell?

Trust in God - Live one day at a time

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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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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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Anonymous's picture
Anonymous
Replies 10
Last reply 2/26/2013 - 10:40pm

 

 

LISA LYNN SCHMIDT (nee BLACK) With great sadness we announce the passing of Lisa, who courageously battled with Melanoma for the past 2 years. Lisa passed away peacefully at home, with her family around her on Sunday, January 13, 2013. She is survived by her loving and devoted husband, Richard and her beautiful little daughter Isabella, just 3 years old. Lisa's loss will be deeply felt by her mother Linda Smeaton, her father Welsey Black and her brother Jared Black. She will be sadly missed by her in-laws, Margaret and Robert Schmidt, Rob and Sarah Schmidt and their sons Tyler and Cameron. Lisa will be fondly remembered and sadly missed by her aunts, uncles, cousins and the many friends who supported her throughout her illness. The family is so thankful for your friendship and love during this difficult time. Visitation will be held at the Visitation Centre in Mount Pleasant Cemetery 375 Mount Pleasant Road (east gate entrance) on Saturday, January 19th from 10:30 a.m. - 12 noon followed by a celebration of her life in the chapel at 12 noon. In lieu of flowers, donations in Lisa's memory to the Princess Margaret Hospital Foundation for Cancer Research or the Temmy Latner Centre for Palliative Care would be appreciated

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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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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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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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Hi all

Diagnosed late in 2012: Back tumor, Breslow 14mm, mitotic 12mm, Clark's IV, ulcerated. Tumor recurred in original excision site (before WLE) in about 4 weeks, at 7mm.

SNLB showed positive nodes under both arms (1 of 2, and 2 of 5). So doctors are giving me the option of having both full dissections, or not. Chance of morbidity is higher when two dissections are done, they say. At this point, I'm essentially IIIC, with a very active cancer. Is it worth it to have the dissections, and risk a lower quality of life (I'm generally a very active guy, and my work requires me to be), or just accept that it's probably systemic, and just watch and wait?

Thanks, 

John

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mmmax's picture
Replies 18
Last reply 2/26/2013 - 5:19pm
Replies by: POW, mmmax, Anonymous, Snickers60, Tina D, chalknpens

Hello,

Haven't been around here much in awhile. It has been 4ish years since my last run in with mm. Been checked evey 6 months since and have a appointment this Wednesday that has me worried for the first time. My doctor and I have been keeping a close eye on a pigmented lesion on my lower eyelid margin for years. No changes till about 2 months ago... So one more day and I will know if we are going back down the road. Here is a pic.. notice the dark spot thats new :( in the last few months. Hope it is not as it looks but it sure looks suspicious to me. At a minium going to have to have a tricky biopsy... 

 

https://docs.google.com/open?id=0B-qsqDcvqoiBZkdFcUZPU3JWd28

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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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Hi Everyone,

We have some answers today about my Dad. We're facing a pretty serious situation (brain, bone, lung, muscles, skin). We've opted for very agressive treatment in the form of Temozolomide, Cisplatin, and Vinblastine (CVT). Our goal is to shrink the crap out of this stuff and hold it at bay. Anyone else have experience with this treatment plan? He'll be on a 21 day cycle. This is crazy to me as he has very few symptoms, feels pretty good, and has been playing 18 holes of golf every few days up to today. My Dad is 67 y/o and in very good physical and mental shape. 

Any experience with this treatment would be much appreciated. I haven't been able to find much on the internet. Apparelty Temozolomide is pretty new?

Thanks,

Natasha

We can do this!

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POW's picture
Replies 7
Last reply 2/26/2013 - 9:13am

As I just posted on the Off-Topic Forum, I am about to travel from Atlanta to Tampa for what I expect to be a last visit with my brother. I would appreciate any advice or insight any of you may have about how to make the visit as pleasant and satisfying for him as possible. I don't mean to bum anybody out, but sometimes there are just no more treatment options. I would like to continue to do my very best by my brother as I have done since his original diagnosis-- including this stage of our journey. I would appreciate your help. 

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