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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Anonymous's picture
Anonymous
Replies 5
Last reply 11/1/2013 - 4:16pm
Replies by: Anonymous, Janner, DebbieH, sharon0803

just curious if any of you smart, wonderful folk know if one is 'locked in' with mitotic rate of initial lesion...can it slow down, or speed up in subsequent lesions/metastasis? Haven't seen anything in the lit/research I've perused over the last 2  + yrs...however, I know it is a prognostic indicator of recurrence...thanks very much

Sally

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Replies by: BrianP

Currently in Stge one trials:

http://www.medindia.net/news/new-drug-proves-effective-in-drug-resistant-breast-cancer-and-melanoma-126683-1.htm#ixzz2jM1A0g6D

LEE011 shows promising results in drug-resistant melanoma and drug-resistant breast cancer when tested in combination with other targeted therapies, say researchers.

I'm me, not a statistic. Praying to not be one for years yet.

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melissa ann's picture
Replies 5
Last reply 11/1/2013 - 9:10am
Replies by: Tina D, BrianP, Fen, GAngel, Phil S

I am so very sorry to say that I lost my best friend and sweetheart Saturday morning 10/26 at 2:00am. He is no longer in pain and his body is whole again in heaven. Peck taught me so much about faith and our God and it brings me peace to know that he is rejoicing in heaven. We are all very sad and missing him already. We had a beautiful day  with him in the hospital before he left us. He went with a smile and peace on his heart. He fought melanoma for 12 years and lived life as much as possible.  we have wonderful memories.   He is the most amazing husband , father, friend and physician. And I am so lucky to have called him my sweetheart. I appreciate all of you and wish nothing but healing for all.  Peace!

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team_maureen's picture
Replies 6
Last reply 11/1/2013 - 9:07am

Dear MPIP Community,

My family and I never posted on the page, but we read it every single day -- my baby sister, Maureen, battled melanoma for three years. She just passed away, at age 29, on Sunday. I wanted to take a minute to say thank you -- we don't know each other but we know what this terrible disease can do. My mom and I looked to you for advice and comfort -- you helped us fight this battle even though we never met. 

We made sure, in her official death notice, to say that she passed from Melanoma. We wanted people to know that this disease is not "just skin cancer" as we're heard from others. It's a beast. But Maureen is now at peace, and we will keep each of you in our hearts and prayers always. Warmest reagards,  Alexandra Abboud Miller

---------------

From Team Maureen facebook: https://www.facebook.com/TeamMaureenAbboud

Our dearest Maureen passed away last night surrounded by her family, friends, and a love that could have burst the room. 

Our hearts are broken, but to have known her, and to have helped her fight this terrible disease, was a privilege and an honor. All of you, as part of Team Maureen, were such an important part of this journey. We can't thank you enough for that -- she always said that this page, your words and photos, helped her keep going when it would have been so easy to just stop fighting.

Maureen lived more in 29 years than most people do in a lifetime. She travelled the world, loved so deeply, and always lived her personal and work life with passion and determination. She was so much to so many people. 

So what do we do now? We cry as long as we need to. We remember her every time we hear a champagne cork pop. We eventually do what she's always done, what she would have us do now: "pour yourself a drink, put on some lipstick, and pull yourself together."

We love you, Maureen. Be at peace, our sweet Angel.

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/1/2013 - 9:06am
Replies by: Anonymous, Janner

Just wondering if anyone has any idea re: if/when PD-1 and combo with ipi  is FDA approved, it will be indicated for Stage III and IV 'resected' patients? I elected to watch/wait (the latter category) instead of enroll in the ipi 3mg or interferon trial, fearful of getting interferon (I know, if one doesn't try, then one will NEVER know) and fear of messing up getting into ipi-PD-1 trial if...more likely when, I may need it...unsights?

Thank you all...

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My husband just returned home from Afghanistan. A few days after his arrival I noticed a black mole on the back of his neck and a suspicious spot on his leg. To make a long story short, he has a biopsy of the neck and was told it was melanoma. He went back and they made a large incision on the back of the neck. That biopsy can back "negative". He wasn't given a stage or depth.

The first time he went in he was told the spot on his leg looked fine. After the second biopsy of his neck, a full body check was performed. The doctor pointed it the leg spot and they scraped it off and sent it in for a biopsy (we are awaiting those results).

What is next? Other than skin protection, are there any other tests that should be performed to make sure it hasn't spread beyond that spot (to the lymph nodes, for example)?

He is acting like it is no big deal but I am slightly worried short the whole thing. Sadly, I don't have a lot of faith in many of the doctors I have seen on the military posts so I just want to make sure we have our bases covered.

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bkinman's picture
Replies 5
Last reply 10/31/2013 - 7:59pm

Had burning with urination this morning and then blood on tissue (some blood on tissue Sat night - thought it was due to relations with my husband), classic signs of UTI. Called oncologist and they sent me to Family Dr. for urine test. Second trip to restroom of the day, before going to Dr., there was blood in toilet after urination. Have had multiple UTI's in my 43 years, but never had blood in toilet. Went to Dr and test did show some infection (said small amount) and lots of blood. Of course I took to google and one of the signs of bladder cancer is gross hematuria (visible blood in urine). Only post I could find on here in reference to bladder cancer and symptoms she had blood in urine.

I called Onc and told him what test results were and he told me to take the 500 mg of Cipro for 2 days only and take dificid - due to 3 occurances of cdiff in last 3 months.

Now I am concerend that the mel could be in my bladder. Last scan was August 8th (or 9th, can't remember). It was clear except for spot on liver that was doing better. Nodule in lungs we are watching - no uptake on PET. Spots on spine are stable. 

Any thoughts. I go to Onc tomorrow, but I think it is just for Xgeva shot.  I will ask nurse if a ultrasound or other scan may be in order.

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MattF's picture
Replies 13
Last reply 10/31/2013 - 2:01pm
Replies by: Michelem, BrianP, Gene_S, POW, MattF, Anonymous, sailinjeffnk

I saw the Oncologist at UCLA today. Stage IIIB head and neck primary on ear with 2 nodes positive 9 months later, now parotidectomy and neck dissection....treatment options (and believe me I feel so blessed to HAVE options) are:

1.Radiation to head and neck

2.Interferon

3.Yervoy v interferon Trial

4.Zelboraf v placebo Trial

Due to timing and 2 different care facilities I am unable to do the radiation and the other treatment together.

I'm leaning toward one but interested in any information or thoughts as I want to use the weekend to decide.

Thanks in advance Matt

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robbier's picture
Replies 2
Last reply 10/31/2013 - 1:39pm
Replies by: Michelem, Tina D

Hi:  I was diagnosed 2 years ago with Melanoma Cancer stage 3 A, one Dr says A, the other says B, anyway, last week on Oct 18th I went for my second pet scan of this year, at the present time I am being followed, still in remission, I was the one that opted to not to do chemo, the Dr said remission, and my thought was, you are saying remission, so I will just be followed.  That is what I am doing, even though I go for my test, and follow-up visits, its been hard.  But my beliefs in God, and good suppot has help me.  Mainly my belief in God, and the strength to walk this out.  I go back in Jan of 2014 for a follow up visit, and don't have to do another PET scan for 6 months.  So ya'll here, keep you chin up.  Be encouraged. 

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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Michelem's picture
Replies 2
Last reply 10/31/2013 - 1:35pm
Replies by: Michelem, pd1gal

My husband had surgery last week - eight lymph glands removed a very deep melanoma from the bottom of his foot, which wound was then covered with skin harvested from his thigh. The harvest wound was covered with a mesh fabric and bandages. The doc tells us it is up to my husband to now remove that mesh - either by tearing it off all at once, or gradually peeling it off a tiny bit at a time. Either way it is painful.

The expectation is this will cause the wound to bleed, he is to wear shorts and keep it open to the air so it will heal over. But getting that mesh off will be painful and difficult - has anyone here got any thoughts on how best to manage?

We have other questions regarding next steps, but this is occupying our attention right now! Much thanks for any help or ideas. 

MicheleM

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MattF's picture
Replies 2
Last reply 10/31/2013 - 12:49pm
Replies by: Michelem, BrianP

I signed into the Ipi vs Interferon Trial at UCLA.

It is random trial of either Interferon High Dose or Yervoy (Ipi) Low Dose.

Just doing admin stuff and tetsts soon....told i will be randomized and start within 3 weeks.

I will keep everyone updated.

Matt

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hopeagain's picture
Replies 5
Last reply 10/30/2013 - 1:19pm
Replies by: MaryD, Judy D, sailinjeffnk, doro, Anonymous

Anyone knows of a good melanoma oncologist in the San Francicso area? What treatments does he offer?

Anyone treated by Dr. O'Day? What treatments does he offer?

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ajolvey's picture
Replies 6
Last reply 10/30/2013 - 10:18am
Replies by: ajolvey, heather F, Janner, Anonymous

Recently diagnosed. Not sure where to start...

My melanoma is on the back of my leg and is a T1A, Clark's level 3. The depth is into the pappilary dermis. Does this mean it is more likely to have begun to spread?

Anybody had melanoma in that location? How bad is the surgery to remove it and what is the recovery time?

Thanks,

Aaron

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Hi,

I had this question a while back: where can I find more about the cost of medical procedures across US and finally I found a website that provides the means to access it.

http://www.pontushealth.com

The site allows sharing of previous experiences about medical procedures, doctors, etc. and get free access to similar information when it is launched early next year. All I needed to do was to fill in a 10 minute survey and provided them with an email address where I'll receive my account and password.

I thought this might interest some of you.

Cheers,

a patient like many others

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shonnat's picture
Replies 6
Last reply 10/28/2013 - 5:03pm
Replies by: shonnat, Anonymous, Janner, POW, Mat
My husband was diagnosed in June with stage 1V mel. 3 tumors in the brain and one lymph node in armpit and one in abdomen. 1 brain tumor was 2.5cm and symptomatic and become 3cm within 2 months. The other 2 smaller and stable and have not changed since diagnosis. Was given wbr immediately and then a decision to have gamma knife surgery about 6 weeks later on the large tumor. Once that was done he started on Zelboraf. He has been on Zel for 2 months with no response in the body or brain. Few side effects from taking it though.
About a month after gamma knife his scan showed slight shrinkage but his presenting neurological symptoms are worse than before surgery. He has lost the use of hand and leg on one side of his body They say its the brain swelling and he is on high dose steroids.
They are not helping either. We will wait and see if it can get better. It takes 3 months they say for radiation to fully work.
We are being treated at the BC cancer agency which I believe is very good.

His medical oncologist is surprised that Zel is not showing results. It usually acts fast. Does anyone have experience of it kicking in later. She is waiting another month to see if there are changes then she is thinking of trying Temador as it crosses the BB and he has hardly any issues with mel anywhere else. Has anyone had any success with it for the brain? We could try IPI but maybe later as it doesn't seem to have a high % of success with brain mets, or am I misinformed.

Its very tough as we have had not much success in any area. 

Any suggestions or positive experiences could really help at this point. :idea: 

Thanks
Anna

 

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