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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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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I don't know how many people have read about the remarkable work that Dr Steven Rosenberg has
been doing. As many new members of this forum may not realise that one of his patients has a
truly amazing story to tell, I think that is it timely to post the link to the details of his
"journey through stage 4 melanoma" here:
http://wgalinat.blogspot.com/

This is a link to a recent post by Warren Galinat that somehow didn't get the attention that it
deserved:
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/hi-all-warren-galinat-here-back-nih

Frank from Australia

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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adgesoph's picture
Replies 10
Last reply 5/6/2011 - 8:49pm

 

I just wanted to share that after a year of battling melanoma my dad has gone to be with the Lord.  Things went down hill quickly after not responding to IL-2, and braf and then b-raf for brain mets. We were hoping to give ipi a try but there just wasn't time. He fought to the very end and so badly wanted to beat this horrible disease.  His father and sister also battled melanoma and passed away.  

I wanted to say thank you for this forum and the knowledge and information you all share.  I admire all those that are fighting melanoma and hope and pray that a cure can be found.  Continue to fight and never lose hope.

My dad will be missed tremendously by many but we know that melanoma know longer has a hold of him.  

Here is my blog where I pay a little tribute to him if you're interested:

http://wwwourunexpectedjourney.blogspot.com/2011/05/forever-in-our-heart...

Thanks again for all you do and stay strong!!!

 

Adrienne

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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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kjshaner444's picture
Replies 0

Is Yervoy prescribed only for late stage melanoma? And, what defines "late stage"?  Thanks.

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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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Hello, I'm new here. Was instructed by someone on another message board to come here, post my report, and ask for "Regs or Janner".  Thanks in advance to all for your thoughts and advice, it is appreciated.

I had a small mole removed recently, after the pathology report came back the dermatologist said we needed to do further excision.  This is the first mole I've had removed with any suspicious findings.  Basically, the findings are equivocal, they say that they cannot exclude melanoma and report recommends conservative re-excision. This has already been scheduled, basically I need to know what questions to ask.

*********
DX: Lentiginous compound nevus dysplastic type with severe dysplasia, extending to all the margins with postinflammatory pigmentary alteration. Conservative re-excision is advised.  Comment: Pagetoid extension of melanocytes are seen. Special stains are pending.

Tissue measured 0.3x0.3cm in greatest dimension. Entire specimen submitted in one cassette.

Dermoepidermal junction contains a primarily nested melanocytic proliferation. Within the superficial dermis, discrete nests of melanocytes with slightly smaller nuclei are present. lateral to the dermal portion of the lesion moderately atypical melanocytes proliferate which bridge and fuse adjacent rete and are associated with a superficial fibrosis of the papillary dermis.  There is a proflieration of solitary melanocytes at the dermal-epidermal junction. In the superficial dermis, melanophages and scattered mononuclear cells surround capillaries.

Immunohistochemical studies reveal with anti-melan-A stain, a diffuse melanocytic hyperplasia with focal pagetoid extension of melanocytes.

Comment: it is difficult to exclude an early, evolving malignant melanoma in situ, superficial spreading type, arising in association with compound nevus dysplastic type with severe dysplasia, extending to all the margins.

*********

The pathology analysis was done by dermatopathologists, reviewed by a fellow as well as intradepartmental review session (all from a teaching hospital in NYC). All agreed on report.
 

My question is -- what stands out for you? what should I be asking my doctor? In the NYC area who should I ask for a 2nd opinion from?  what will they be able to tell from this larger excision, if anything? if they still can't tell if it's melanoma, then what?  Also, I'm in my mid-late 30s, female, if that's of use to know.

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

 

Greetings to all, 
 
Hope you are doing well. 
My mom already had two weeks of whole brain radiation and already finished a session of 6 days with temodar.  Since then, she has regained some speech abilities and her motor skills have (slightly) increased.  However, now, we have a new worry:  her concentration, comprehension, and memory have noticeably worsened.  She confuses colors and body parts, she cannot remember the names of her children, she has a hard time understanding orders, and she confuses her words.  At times she has moments of clarity where she is completely lucid and coordinated, but those moments are getting fewer and farther between.  
 
Has any one of you suffered these types of confusions with radiation treatment?  She does have several brain tumors, and maybe those are to blame for her current state, but I just cannot believe that they have advanced so quickly in so little time.  Please write me with your experiences or ANY advice you have.
 
A hug from Argentina,
 
Manuel
Son of patient

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