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.

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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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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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