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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Replies by: EmilyandMike

My husband is stage 4 with three subcutaneous sites and one that is on the vein leading to his pancreas.  He went on Ipi after no results with il2 and not qualifying for BRAF.  He has been on Ipi for 12 weeks and one of his sites has tripled in size and is now painful.  Our doctor thinks it's "swollen" because the Ipi has stimulated his immune system to attack it.  I don't like the "wait and see" approach so wondering if anyone can share their experience.  I would rather take action if the most common experience is that the Ipi didn't work if the tumors grew.

Thanks

Live in each season as it passes; breathe the air, drink the drink, taste the fruit, and resign yourself to the influences of each. Henry David Thoreau

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nyalt's picture
Replies 10
Last reply 5/8/2011 - 5:02pm

Hi, I had a WLE on my back about a month ago.  I ended up with an infection in the wound and required a few extra doctor visits, special dressings and some antibiotics, but it is now healing well.  My doctor has me putting antibiotic ointment on it 2 x day with a bandage.

Here are my questions:

1. as your WLE healed, what color was the base of your wound? 

2. how long was it sore?

3. if your scar had an indentation in it, did it eventually minimize or did it remain depressed?

I've never had anything like this so I'm not sure what the range of 'normal' is.

Thanks again for your thoughts.

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petie540's picture
Replies 10
Last reply 5/9/2011 - 7:31pm

How many out there have responded to treatment and are unsure if this means  good things lie ahead or are you just getting closer to a new event with your luck running out. See my profile to understand

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Lisa13's picture
Replies 17
Last reply 5/15/2011 - 5:50pm

I wrote yesterday about getting rejected from the ipi/placebo trial in Montreal because they found some suspicious, tiny nodules in my lungs. They're too small to clearly see what they are, but they definately seemed concerned it's melanoma (up to 20 small nodules). I just had a Petscan at the end of February, plus surgery and a lymph node dissection and had clear CT scans as well. 2 months later, I've got these nodules and I'm scared out of mind. It's kind of a blessing I got screened for this trial, otherwise I wouldn't have gone in for scans until the end of June!!  I'm hoping since it's early, we can start trying to treat this. 

I have an 18 month old daughter, my husband and I just bought a home thinking melanoma wasn't coming back anytime soon and now I'm crushed. My oncologist suggested on the phone to wait a month to see if they grow, but I'll be telling him next week, I want treatment right away.  Why would I give this dreadlful disease a chance to invade my body??

First of all, since these are very small right now, can systemic treatment possibly make them disappear? Can it also help to kill any other rogue cells that are floating around or keep it from coming anywhere else?  I'm going crazy and have to wait till Wednesday to get any answers. My oncologist mentioned IL-21 and I"m willing to do anything.  Please let the Stage 4 people come on here and tell me there is hope that I can keep this from spreading.  I want to believe that this is a mistake and this won't be melanoma and will all disappear.   I went from being hopeful to utter despair.

Lisa

Many impossible things have been accomplished for those who refuse to quit

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Anonymous's picture
Anonymous
Replies 0

Hi Jim,

 

Came across one of your all posts & wondered how you are doing with your decision to have scans early or continue with the drug you are taking at Angeles clinic.

Decisions are always difficult when it come to treatment but I know that you will make the correct choice for you.

Please keep us posted.

Wishing you the best

Douglas

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I'm curious if anyone on Medicare has gotten Yervoy since FDA approval? I have found out that BMS does not have any assistance for those on Medicare. In calling Medicare, they cannot tell me if they can help. I was told they don't pre-approve, that my doctor's office can call an access number and talk to someone. I have a call into my doc's office and hope they will be able to find something out.

I was on the compassionate Ipi trial, which I finished Dec. 29, 2010.I have ocular and cutaneous melanoma. My first scan after the course was not good, with new liver lesions and lymphadenopathy. It was decided to scan again in Feb. My Feb. scans showed one less liver lesion and some reduction in a couple others, still lymphadenopathy. It was felt I was having an inflammatory response and that I also was eligible for re-induction, should I need it. April 7th scans showed decrease in hepatic metastases(now down to 4), decrease in multiple mesenteric metastases and retroperitoneal adenopathy BUT increase in size & number of mediastinal nodes. They're not sure if this is progression OR  Ipi/Yervoy doing it's thing. I'm scheduled for another scan May 24th. I'm hopeful, as all the abdomen STUFF looks better BUT am being pro-active in looking into getting Yervoy if upcoming scans don't look so good!

Thanks,

Nan

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I was just wondering if my sister is getting the most out of her oncologist and if her scans for her stage are normal. Sara has stage 3b diagnosed Sept 09 and did the 1 year of interferon which she finished this past Feb. She was having routine 3 month scans which included MRI's and CT's however she only had 1 PET scan right after diagnosis as well as only 1 brain MRI.  At her last visit when she finished her interferon the oncologist told her he would be moving the scans to every 6 months. He told us that repeated use of the scans every 3 months could pose long term risks. My sisters primary was 3mm and ulcerated and had a mitosis of 15/mm and she had microscopic involvement in the sentnial lymph node. We just want to make sure that we are being proactive and as aggressive as we can be. 

1. My first question, is it standard to not give a PET scan for routine scans and use it just for a baseline? And rather have MRI's and CT's?

2. Is it standard to move scans to every 6 months when she hasn't even been NED for 2 years yet?

We are looking into switching oncologist and going to University of Wisconsin Madison Comprehensive Cancer Center, but would like to know if this would be the same course of action that most dr's take for stage 3... any insight would be greatly appreciated!!

Thanks so much,
Jessica (Twin sister diagnosed with stage 3b) 

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Carmon in NM's picture
Replies 1
Last reply 5/6/2011 - 11:07pm
Replies by: lhaley
Yesterday my husband and I met with our new radiation oncologist and we both really liked him. Dr Schroeder is young, energetic, interactive and very up to date with his knowledge of current research and treatments for melanoma. Best of all, he was on the same page as we are regarding prophylactic whole brain radiation (WBR) and radiation therapy.
 
Like us, his feeling was that WBR should be held back as a last resort treatment for me if I should have recurrance in my brain that cannot be managed with gamma knife surgery. He talked about with the size of the tumor that bled last year, I most certainly had other melanoma cells in my brain. The fact that I have had no recurrance in nearly a year is an excellent sign and to him means that most likely my body has handled them on its own.
 
On using radiation therapy on the adrenal tumor site as a prophylactic treatment, I was on the fence on it and would have agreed had he thought it was a good idea. But he didn't. He said with no active disease there or anywhere else, there was nothing for him to focus on and since the adrenal gland is located in the middle of a lot of organs including the bowel and spine, it would be too easy to also damage organs that either couldn't be repaired, or repaired with great difficulty and all of it life threatening.
 
So the decision we all agreed on is that I should enjoy the summer with a break from any treatment! And he will continue to follow my case with consultations after each of my three month scans. I feel very good about that as I was impressed with his level of knowledge on melanoma and that he isn't a doctor who wants to jump into treatments just to be doing something.
 
So there you have it! My next scans will be on July 11th and we all hope that closing notation of 'No evidence of metastatic disease.' continues to show up on these scan reports too.
 
Carmon in NM - Stage IIIb 9/2008, Stage IV 6/2010 with brain and adrenal mets. NED since 4/13/2011 after craniotomy, gamma knife surgery and clinical drug trial with carboplatin, paclitaxel and temodar.
Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011. It’s not what happens to you, but how you react to it that matters. ~ Epictetus

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How long have you had mel, and what stage are you at now?

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TracyLee's picture
Replies 1
Last reply 5/6/2011 - 10:45am
Replies by: KatyWI

Today is my radiation consult for "the plan".

What should I be asking? I am getting two second opinions before beginning radiation.

My melanoma is scalp centered, with neck involvement.

Thanks

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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teach's picture
Replies 2
Last reply 5/6/2011 - 10:57am
Replies by: dian in spokane, nicoli

I had an early melanoma removed in October  2007.  Recently, for the last month or so, the scar has become terribly itchy.  It is on my back, and I can't see it, so I had my husband take a look.  He can't see anything unusual, and he didn't feel any bumps.  I am somewhat concerned, since it has been so long since my surgery.  I just wondered if anyone here had had a recurrence with a symptom like this.   I am watching it, but don't want to be paranoid.  

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Hello everyone. I was diagnosed with Melanoma in-situ last June. I had my wide local excision on my calf and everything has been fine since.

I just had my checkup and had two moles biopsied. One came back as squamous cell carcinoma which they say they will freeze the remaining borders.

The other came back as an atypical/precancerous mole (that was the words the nurse used). She said I will need to have an exicision for the atypical mole. I was kind of stunned at the time so I didn't really question it but the more I look into things this seems to be a very agressive treatment, even with my history of melanoma.

I left a message for the derm to call my back. The lesion in on the back of my shoulder- kind of where my bra strap sits. I also have concern about there being enough skin for an excision. I am pretty thin and it sits right on top of a bone.

Anyway, I am curious to see what everyone thinks of this treatment plan. I can't find much information at all about WLE's for atypical moles.

Thank you in advance.

Amanda

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Anonymous's picture
Replies 1
Last reply 5/11/2011 - 4:43pm
Replies by: Linny

We just moved to Margate City New Jersey and need a great dermatologist for my husband.  We are willing to travel if necessary .  Any suggestions would be most helpful. 

 

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We just moved to Margate City New Jersey and need a great dermatologist for my husband.  We are willing to travel if necessary .  Any suggestions would be most helpful. 

 

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We just moved to Margate City New Jersey and need a great dermatologist for my husband.  We are willing to travel if necessary .  Any suggestions would be most helpful. 

 

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