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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Rocco's picture
Replies 3
Last reply 5/10/2011 - 3:23am

In March 2008 I participated in a pilot/Phase I trial at DFCI called, "Adoptive Cell Transfer of  Mart1/MelanA for Malignant Melanoma" during which I experienced a mixed result - significant shrinkage of a pulmonary tumor and a slight growth in another.  I am a firm believer that this trial aided my success with ipi in the  MDX-010 Compassionate Use trial that I entered into in August 2008.

Results of the 9 person Adoptive Cell trial were published on April 27th.  Here is a short overview of the trial from the DFCI website with an interview with Dr. Marc Butler. 

http://www.dana-farber.org/Newsroom/News-Releases/New-technique-extends-cancer-fighting-cells’-potency-in-melanoma-patients.aspx 

JimmyB if you're reading this, the full trial results may be of interest to you...

Luke 1:37

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Anonymous's picture
Anonymous
Replies 19
Last reply 5/9/2011 - 8:21pm

i am just curious - i know may is melanoma awareness month and in speaking about this topic with friends i realize so many are so clueless about melanoma. they think it must be some ugly looking, huge, black mole. in reality, i know a few people that have pretty small melanomas that werent dark at all and looked like a little freckle.

so did your melanoma fit the description that most people assume - or did it look pretty harmless and your dr was even surprised by the diagnosis.

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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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Anonymous's picture
Anonymous
Replies 2
Last reply 5/9/2011 - 9:55am

Hi Everyone,

 

Does anyone know if Stage 3c  Melanoma is eligible for California state disability. Please tell me what is needed to qualify? I am a newbie.

 

Thanks,

Kay

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Anonymous's picture
Anonymous
Replies 3
Last reply 5/9/2011 - 9:12am

Hi Donna,

 

I saw an  earlier post that you said that you were going to do a 2nd round of IPI yet you are NED.

My questions is why did you decide to do a 2nd round if you are NED w/o any tumors/subqs on your leg? Did you have scans before deciding on the 2nd round of IPI.what were the results?

 

I wish you a good response on your 2nd round.

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Becky's picture
Replies 1
Last reply 5/8/2011 - 7:32pm
Replies by: carol b

Happy Mother's Day!  I am thankful today to have breakfast with my son who is 21 months NED. And of course my other 2 sons, the oldest (26)  living life with an uncontrolled seizure disorder. I have great kids!

Keep fighting

Becky

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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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Rendergirl's picture
Replies 5
Last reply 5/8/2011 - 4:53pm

I had surgery one week and 2 days ago to remove the lymph nodes in my right arm. Since then I've felt like I have a football under my arm. The back outside of my upper arm is numb, tingly, hurts, and feel normal in small increments all over my arm. My elbow feels like I've banged it on something. These sensations also extend to the back of that shoulder and around the torso on the side of my breast. I've seen my surgeon this week and she thinks everything looks good, but I'm wondering how long these effects will last. I know the recovery time is 6 weeks and I'm only a week in. Has anyone else had these weird symptoms? The surgeon said she did have to cut two of the nerves going down into my arm, and that it could take months for them to grow back, if they do.

Any feedback on how long before my arm/armpit feels normal again? (Still not sleeping on that side, either).

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My family and I have taken part in the Outrun the Sun Race Against Melanoma for the past couple of years, and will do so again this year.  It is a wonderful, very well attended event.  If you are in the central Indiana area, I highly recommend it.  It is June 4th this year.

http://www.outrunthesun.org/events/index.htm

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naty's picture
Replies 4
Last reply 5/7/2011 - 7:12pm

My brother had a biopsy on a mole.  The path came back positive melanoma cells.  He has another app't for a deeper excision.  Does this mean melanoma?  (he's the type to ask no questions and think everything means nothing.  Our father passed from melanoma 4 mo's ago and his mother also had melanoma twice (but died of other causes) 

I really want to go to his next app't.  Any idea on this ? diagnosis?

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shellebrownies's picture
Replies 4
Last reply 5/7/2011 - 7:07pm

Bad news from Dana Farber today; Don is officially Stage IV. It appears that it is spreading even more rapidly than the doctors expected. The PET scan done last week showed not only increased tumor growth deeper in his right shoulder, but it also showed at least 2 mets in his liver (one on each lobe), bone lesions in several areas away from the original site.

We are still waiting for the BRAF test results (our old hospital dragged their feet on getting DF the sample...), but Don had to get another CT and MRI today and he will be getting a liver met biopsied the early part of next week. The doctors are hoping to get him into the BRAF/MEK trial, assuming the test results are in the brain are still clear.

Please.... we could really use listening to your stage IV sucess stories right about now.... 

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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Sherron's picture
Replies 3
Last reply 5/7/2011 - 6:21pm

Leaving to go do the Melanoma Walk in Dallas, Texas in memory of my Jim, and for ALL OF YOU OTHER WARRIORS!!  WISH ME WELL....

TAKE CARE,

SHERRON,WIFE TO JIM FOREVER!

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kjshaner444's picture
Replies 3
Last reply 5/7/2011 - 2:59pm

I've read a lot, but am still uncertain whether Yervoy is prescribed only for late stage (Stage IV). Thanks.

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petie540's picture
Replies 2
Last reply 5/6/2011 - 11:11pm
Replies by: petie540, Charlie S

Being a melanoma patient and a practicing psychiatrist perhaps I could be of help to the folks out there

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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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