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
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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lhaley's picture
Replies 13
Last reply 5/11/2011 - 4:33pm

I know that we have a lot of new posters lately and I just wanted to give you some hope. My mel arrived in 1979 and had multiple primaries. In 06 I had a deep recurrance under the original scar which took me to stage IV.  That was almost 5 years ago!! 

They've been watching 2 lung nodules and scans today showed they are still stable. Oncologist thinks they might even be a shade smaller. Too small to biopsy and they have been watched now for 5 months. In retrospect we can see that they were there for over a year.  

While I've had 5 recurrances, twice in the bladder, I'm still here and not planning on stopping!

Happy dance tonight!

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thebunches's picture
Replies 6
Last reply 5/11/2011 - 4:27pm

Of course, no results for 2 weeks, but today my husband had the WLE (holy crap that thing is HUGE) and the SNB. He had two lymph nodes removed during the surgery as well as the mel. I can't believe I forgot to ask how deep the thing was. (The inital dermatologist report said at least 1.0mm.) We go back to the oncologist on Thursday for a f/u visit and to get a look at the two incision sites.

He said one of the incisions was a "hernia incision", which was the type of incision. Anyone know what these things look like?

Also, I saw on a prelim report that my husband is a T2a, N0, M0. I assume that's good so far, but we won't know the results from the SNB for 2 weeks, so I guess that's not a permanent number, right?

What a day. Had our first-ever onco appt yesterday morning, and had surgery today. It's crazy how we entrust our lives and the lives of our loved ones to people we have only known for 24 hours.

Anyone have any tips for getting through the next two weeks? His site is his left abdomen and the nodes came from his left groin area. I want to help him so badly...I feel like such a failure because I have no idea of how to be the wife of a cancer patient. (Not that there's a class I can take or anything; I guess everyone just learns via trial and error...)

Prayers appreciated, and please know that you all are in mine as well.

--Shay

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shellebrownies's picture
Replies 12
Last reply 5/11/2011 - 3:52pm

My husband Don was given info on three trials he might qualify for if he doesn't have brain mets. We've started reading through the packets, but it's kind of mind-boggling right now.

I was wondering if anyone has been on or has any good information on the following trials: 

BRAF/MEK

Ipi with Bevacizumab

Ipi with GM-CSF

 

I appreciate any feedback, experiences, or information you can provide. Thank you!

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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churchwelldana's picture
Replies 9
Last reply 5/11/2011 - 1:15pm

I have Cigna through my job and I am currently getting Interferon shots 3 days a week at the West Clinic. I am being charged a $25 copay for each visit, that's $300 a month for a year, just for my Interferon shots! Is this typical or do any of you have advice for what I can do to reduce my costs?

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Tim--MRF's picture
Replies 3
Last reply 5/11/2011 - 12:02pm

A lot of folks on this board have explored or taken treatment with the Plexxikon BRAF inhibitor (also known as PLX4032).  The various companies involved in developing that drug announced early this morning that they have submitted the drug for approval by the FDA.  They are now calling it "vemurafenib."

If they submitted under acclerated approval (which I think they did) the FDA decision should come within the next six months, and possibly sooner. 

Yervoy was approved in March this year.  If vemurafenib is approved this year, that will mean two new drugs in one year--after 13 years of no new drugs being approved.

Neither of these drugs is what anyone would call a home run, but it is good to see some movement after many years of dissapointment.

 

Tim--MRF

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Anonymous's picture
Anonymous
Replies 5
Last reply 5/10/2011 - 5:11pm

Hello everyone,

My 4 y.o. boy developed strange bump on the palm of his hand: it is reddish but when I press on it it becomes almost flesh colored.
I am Stage 1 patient and I admit that anything strange or unusual on the skin of my kids drives me crazy.  Warts do not blanch, do they? Should I be worried????

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Hello again, all.

Just looking for some support today, as I am feeling overwhelmed and scared. My husband Don is undergoing what we hope to be the last round of tests before a treatment plan is decided upon. He goes in to Dana Farber tomorrow for a fine needle biopsy of a suspected met in his liver needed to confirm the Stage IV diagnosis.

First, I am just find myself worrying about every last ache and pain he has now. The large difference in the progession of his disease between the April 6th and his April 29th PET scans really has me worried about how quickly the melanoma is spreading. (April 6th scan showed more lymph nodes near the incision site that still had cancer and an area of concern on the left side of his neck near the thyroid gland. April 29th scan showed increased growth of infected lymph nodes as well as 2 small nodules in right lung (too small to categorize as cancer at time of scan), scattered areas on both lobes of his liver, and bone lesions on the left humerus, left ilium, left femur, right and left posterior ischium, right acetabulum, sacrum, spinous process of L5, vertebral bodies L2, L3, L4, the left 7th rib, the manubrium and the body of the sternum. Taken from report.)

The doctors made it sound like none of these areas were very large in size, yet that seems to me like an awful lot of spread in 3 weeks. And here we are waiting *another* 3 weeks before we begin treatment. I don't know what to expect; I don't know how to tell when a cough is just a cough and when it's a symptom, when aching is just sleeping wrong and when it's a symptom. I'm just so scared that the necessary time these tests are taking are making Don so much worse that any treatment he gets won't work. Or perhaps I should say that if the 1st treatment he gets he is not a responder to, I don't know how much time he will have to successfully try another.

Perhaps I'm over-reacting (I know I probably am) but I am afraid of making wrong decisions that ultimately affect Don's prognosis.

 

Also, questions about the FNB he's supposed to be getting tomorrow... How does that work? What is the probability they will miss the tumor site and have to repeat the procedure? The very LAST thing we want is after waiting a week for the results is to have to repeat it and wait that much longer for treatment. What should we know/expect about the FNB?

Thanks for all your input and support!

Michelle

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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mom3girlsFL's picture
Replies 1
Last reply 5/10/2011 - 5:32am
Replies by: Vermont_Donna

Hi Everyone,

Been lurking, not posting lately.  All is well!

Just wanted to shout out to all the moms a very Happy Blessed Mother's Day!  I know my 3 young, beautiful girls were the focus and the driving strength behind all the *!!#^!! of mel's adventure last year.  And, as I sit here 6mths NED with hand made cards proclaiming the "love you mommy" sentiment,  I feel so lucky and overwhelmed with joy! I am also reminded of my own mom, 70 years old, driving me back and forth to treatments, taking care of my girls so my husband would miss as little work as possible, so selfless...

Congrats all you moms who are here, whether struggling yourself or supporting your loved ones...YOU ROCK!!!  And thank you for being the best you can be!  Keep fighting the fight!

Love and Prayers Always,

Laurie 

Do not fear tomorrow, God is already there.

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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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