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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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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JoshF's picture
Replies 4
Last reply 2/26/2013 - 7:17am

Had scans yesterday. Almost 2 years NED(May). Onc feels real comfortable with my situation. Never found primary and felt this was a dermal primary. At this point onc doesn't feel scans are necessary anymore. Thinks I'm in good place as chance of recurrence is below 10%. This obviously makes me happy but I still have reservations. We all know how tricky this cancer can be...keep wondering if its laying in wait to rear it's ugly head again. You see so many cases on this site where people are given all clear only to have their world rocked again. So though happy not necessarily overly confident. Any suggestions out there?

Let's work for better treatments....for a cure!!!!

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Anonymous's picture
Anonymous
Replies 1
Last reply 2/26/2013 - 7:11am
Replies by: G-Samsa
BernieB's picture
Replies 10
Last reply 2/25/2013 - 11:21pm

 

I am looking for input.
This is my situation.  I was diagnosed with a T2 melanoma with a negative Sentinel lymph node in 2006.
No issues till just before Christmas 2012 when I found inguinal lymph node.
Pet scan was positive for a hyper metabolic inguinal load otherwise negative. MRI was negative. I had a inguinal lymph node section, the original note that I felt was positive in but all the other nodes, 14, when negative
I am otherwise in good health, do not feel sick, and 69 years old, working full-time, so what do I do?
The adverse events with interventions sound really bad. Is waiting for the next recurrence and then intervening reasonable?
Getting a genetic marker for my melanoma is certainly a painless step.
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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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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