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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Outcome of isolated limb infusion (ILI) treatment for Chinese acral melanoma patients with/without gene mutations. -------------- http://meetinglibrary.asco.org/content/127757-144

I'm me, not a statistic. Praying to not be one for years yet.

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Wilbur's_Mom's picture
Replies 5
Last reply 7/9/2014 - 11:59pm

My father had a melanoma on his leg that was removed by wide excision in October 2013.  He was staged at IIa and was told he needed no further treatment because his sentinel nodes were clear.  In late April he noticed three new lesions near the surgical site.  They were all three melanoma and he was referred to a melanoma group in SF.  In June he had another wide excision around the three lesions and three MORE brand new lesions.  He had sentinel node mapping again and three nodes were identified - two superficial and one deep.  His melanoma surgeon chose to only remove the two superficial nodes.  One of the two came back positive with melanoma and he was re-staged to IIIc.

His oncologist told him the group was recommending radical lymph node dissection of the groin - taking all nodes superficial and deep.  When he consulted with the surgeon, the surgeon wanted only to remove the superficial nodes.  He now has to decide whether to to the radical or superficial with not much information.

One concern I have are that there's still a deep node that hasn't been examined with potential for cells.  The second concern is that the surgeon wants to rely on PET scans for evidence of metastasis.  My father has had several clear PET scans but has active disease in his leg and inguinal nodes so I'm not sure how reliable they are for catching movement early.

Following the surgery (either surgery) he will join the clinical trial for Yervoy vs. Interferon.  If anyone has advice or experience about opting for radical or partial lymph node dissection we welcome input.

Thanks,

Stephanie

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Are they getting closer to learning who Interferon will help the most?  -   ------

Phase II randomized study of high-dose interferon alfa-2b (HDI) versus chemotherapy as adjuvant therapy in patients with resected mucosal melanoma.        -------------------

http://meetinglibrary.asco.org/content/95739-114

I'm me, not a statistic. Praying to not be one for years yet.

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Anonymous's picture
Replies 1
Last reply 7/9/2014 - 12:50pm
Replies by: ltalley

Hello All,

Ive noticed since I got my tatoo on my stomach, a mole that they tattood over at the time has been getting slightly larger... Though Ive put on a few lbs, and the skin has stretched a tiny biy anyway, it worries me because a little line of the tattoo has disappeared and the mole seems to have gotten bigger (across AND upward) ....Ive read on tattoo forums that it's not good to tattoo right over a mole, but he did anyway, I have a smaller freckle/mole growing next to it too but that one has not gotten bigger. Ive had melanoma before (thin-completely excised)

Anyone else have issues with moles inside of tattoos? What doe sit look like? Has it come back positive?

I need to see the dermatologist anyway, but can't get in until october...

 

Help?!

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scastor's picture
Replies 2
Last reply 7/9/2014 - 12:46pm
Replies by: ltalley, Anonymous

I got the call yesterday that my evolving freckle was in fact Melanoma. I am waiting for my path report, but my dermatologist said that it was .29 mm, which I know is stage 1 and not bad at all. I am scheduled in three weeks to have an WLE. Now... I have two questions:

1. It was shaved off.... and I've read with Melanoma that this is a big no-no. So, could this ".29mm" depth potentially be deeper? I don't have my path report yet, so I don't know if my margins are clear or not. But could a shave biospy get it all?

2. Should I find a Melanoma specialist in my area?

Thanks for your help :)

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Anonymous's picture
Anonymous
Replies 2
Last reply 7/9/2014 - 8:06am
Replies by: rick1981, HelenQLD

Hello-

After my father in law noticed a small lump on his side in spring of 2013 his GP doctor told him to watch it. Fast forward to January 2014 and he had the lump removed. It was a melanoma tumor the size of a softball. Scans later reviewed he had lung mets along with additional spots on his spine, bone, liver, splean, and abdomin. They did one round of Ipi before learning he had a BRAF mutation. He was put on the Mek combo and his LDH levels seemed to return to normal in April, may & June after being in the mid 700's. Two weeks ago he had an onc appointment and although his scans showed to be mostly stable he had two soft tissue spots grow on his right side and his LDH level was back to mid 700's. The onc started him on Ipi today, but his blood work showed almost a 900 LDH level. My concern now is he is already in so much pain (on morphine and delada) with it so far progressed I don't know if he will be around to see if the Ipi had worked. We have a great melanoma oncologist at a great facility I'm just concerned it's too late. 

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Gene_S's picture
Replies 2
Last reply 7/8/2014 - 10:02pm
Replies by: Gene_S

 

 

Skin cancer is the most common form of cancer in the United States with more than 3.5 million skin cancers diagnosed in over two million Americans each year. Additionally, one American loses their life to melanoma every hour.  As a result, Senator Jack Reed (D-RI), Senator Johnny Isakson (R-GA), Congressman Ed Whitfield (R-KY) and Congressman John Dingell (D-MI) recently introduced the Sunscreen Innovation Act (H.R. 4250/S. 2141) to alleviate the current 12 year backlog of sunscreen ingredients, and provide Americans access to new and innovative sunscreen products. This is a meaningful step forward in the fight against skin cancer.

How You Can Help: Ask your representative and senators to support the Sunscreen Innovation Act. Senators Jack Reed (D-RI), Johnny Isakson (R-GA), Congressmen Ed Whitfield (R-KY) and John Dingell (D-MI) are calling upon their colleagues to become cosponsors of the legislation and pass the Sunscreen Innovation Act as soon as possible. Contact your representative and senators and ask them to cosponsor H.R. 4250 in the House of Representatives and S. 2141 in the Senate.

In order to address your message to the appropriate recipient, we need to identify where you are.
Please look up and use your full nine-digit zip for the best results.
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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Anonymous
Replies 6
Last reply 7/8/2014 - 7:43pm

How do lymph nodes feel if they have melanoma?  Sore? Just larger?  Hard?  Soft?   I'm just curious.  Thanks!

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Apeachey's picture
Replies 3
Last reply 7/8/2014 - 6:47pm
Replies by: Apeachey, Anonymous

So I recently had 3 miles removed. Two came back dysplastic, one malignant melamoma in situ. I am going back July 23 for a wider excision so they get a clear margin. No one seed worried, they kept saying pre melanoma, blah blah. My report clearly states "malignant melana in situ". 

Is this something I should worry deeply about or is there a great chance they can remove it, and all will be okay. 

Im 29. I have two awesome little boys and I don't want to spend my time worrying. Anyone have some input to ease my mind?

Abby

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Replies by: jualonso, arthurjedi007

I would like to know if there are some good responder to inmunotheraphy after fail to Combo tanfilar/mekinist. I hope many many many....

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gaby's picture
Replies 2
Last reply 7/8/2014 - 2:24pm
Replies by: Anonymous, hbecker

Hi!

I feel scared to tell you that my husband is 2 years NED…. were two years of much anguish, tears, anxiety, a rollercoaster of emotions. Thank you all for your support and information, you are a big company when I am filled with despair, and today I want to share this good news with you. I know we did not win the war but .... step by step.

 

My husband is stage IIIa from june 2012 At that time the oncologist gave him two options:  watch and wait or pegylated interferon for 2 years. He did not felt comfortable with doing nothing,  so He started  pegylated interferon on October 2012.

 

If God helps us and the next PET will be clean, my husband finalized interferon  pegylado on October 2014.

Melanoma has no rules but today I feel hopeful.

God please give us the opportunity to have a child, because interferon caused infertility ...

Regards

Gaby

(from Argentina)

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/8/2014 - 9:51am
Replies by: Janner

Hello All,

I am stage 1b patient diagnosed 10 years ago. About a month ago I felt an itch on my flank and saw a bright red nodule about the size of a pencil eraser. Although it reminded me a bug bite, I freaked out and called my dermatologist to check it out. in 5 days. However, in 4 days, this nodule disappered (from palpable become flat) leaving reddish flat spot (not as bright red as it was initially) and I cancelled my appointment assuming that it is improving. Over the course of 3 weeks, it become less visible, and if I streached the skin/pressed on it, if was almost not visible (was blanching). However, whithin past few days it again become more red and visible, got larger , although it is not a nodule and now resemples the patch of eczema  So, I am freaking out again. I am going to make an appointment with my dermatologist to check it out. My question is wether melanoma (new primary or recurrence) can change like this??? Thanks for listening.

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Anonymous's picture
Replies 8
Last reply 7/7/2014 - 7:24pm
Replies by: Anonymous, Ed Williams, Gene_S, RJoeyB, washoegal, Teochasse

Hello

i follow the forum daily. I am a parent of a stage 3c patient. After two lymph nodes resection surgery my son was diagnosed as NED. He is participating in a trial and had so far two infusions of ipilimulab 3mg/kg. 

The trial involves, among other tests, a CT scan every 3 months. I just wonder if not having any tumor to compare to why it is necessary to expose him to frequent radiation. I wonder if anyone has experienced a different diagnostic and follow up method while participating in a trial. 

Thank ou

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delora's picture
Replies 9
Last reply 7/7/2014 - 12:19pm

A month ago, I went in for my routine PET scan.  My breast and ovary lit up.  After a breast biopsy, they determined that the melanoma has spread to my breast.  I haven't had any tests on the ovary.  I have an appointment at Duke Cancer Center on Monday.  From our phone conversations, the Dr doesn't want to do surgery to remove the melanoma.  I am assuming I'll be going straight into treatment.  I already had interfeion, which was awful.  Has anyone else had this experience?  Any advice?

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