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
Anonymous
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How likely is it that melanoma would go to my groin lymph nodes?  My mole was on my mid back- the slnb was under my left arm.  The lymph node came back negative.   (So right now I am stage 1b).  I'm panicked that it will go to my groin lymph nodes.  Is that common? 

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My 7 year old daughter was diagnosed with Melanoma about 2 months ago.  It was a T1b.  She had a wide excision and a SLNB with 4 nodes removed.  They all came back clean.  So now the protocol is just to go in for skin checks every six months.  No scans.

But I am worried there might be something inside her that we don't know about.  I know it is a good sign that the nodes were clear, but I keep reading here about people who had no signs until a metastisis was later found in a remote area.

Should I ask for an MRI to check lungs / brain? (I don't want CT for her -- too much radiation at that tender age).  It isn't called for given the size of the tumor and the clear SLNB, but I feel helpless wondering if there is something growing that we don't know about.   

7 year old daughter recently diagnosed with melanoma. T1b.  SLNB results clear. 

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Tim--MRF's picture
Replies 10
Last reply 7/11/2014 - 6:59pm
Replies by: arthurjedi007, RJoeyB, Bubbles, BrianP, Anonymous

BMS has launched an Expanded Access Protocol for the combination of ipi and nivo, their anti-CTLA4 and anti-PD1 drugs. Earlier this year both Merck and BMS opened EAP programs for the PD1 drugs alone.

The combination of ipi and nivo has some very strong results. In one study, 88% of patients with metastatic melanoma were alive after two years. Side effects are a concern, with about 2/3 of paitents having Grade 3 or Grade 4 toxicities. The doctors involved with the study felt that these issues were rather easily managed.

This was just announced this morning, so no sites are open yet. As we have seen, sometimes these sites do take a while to open.  For more information you can go to the EAP posting on clinicaltrials.gov.  

Some details:

--mucosal melanoma is included

--must not have had prior treatment with ipi

--brain mets are allowed, if MRI confirms no progression in 2 weeks

I hope to have more information soon, but in the interim here is the link to the posting:

http://clinicaltrials.gov/ct2/show/NCT02186249?term=nivolumab+melanoma&t...

 

Tim--MRF

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arthurjedi007's picture
Replies 1
Last reply 7/15/2014 - 12:51am
Replies by: lbkimball

I just learned this from my doc at Mayo.  Apparently all of us with this disease are at high risk for blood clots. To help during the 8+ hour drive he said to stop every 2 hours or so and walk for a minute. Apparently that's all it takes. He also said like on an airplane or even in the car to keep moving your feet.

I don't have blood clots but figured I should share this info to help us keep from having them.

 

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Credit goes to Rick who posted this article on MIF:   http://www.fiercebiotech.com/story/anti-pd-1-cancer-star-nivolumab-wins-worlds-first-regulatory-approval/2014-07-07

Some folks seem surprised by Japan acquiring the world's first regulatory approval for anti-Pd1....but the history of the drug tells the tale.  From a prior blog post.....

"Once upon a time (2005), in a land far, far away...(Japan), ONO Pharmaceutical generated ONO4538, an anti-PD1 monoclonal antibody, in research collaboration with Medarex (who called the product, MDX1106).  In 2009, the big, getting ever bigger, (? benevolent) King of the World, Bristol-Myers Squibb (BMS) acquired the rights to develop ONO4538/MDX1106/BMS936558  (now called Nivolumab) in North America.   In an additional agreement in 2011, BMS attained the rights to the product in the rest of the world...except Japan, Korea, and Taiwan...where ONO retained exclusive development rights and conducted Phase II studies with ONO4538 in non small cell lung cancer and melanoma and Phase III studies in renal cell carcinoma currently.  However, results of those studies are hard to find."

Hopefully FDA approval will not be far behind!  Thanks, Rick!  Celeste

 

chaoticallypreciselifeloveandmelanoma.blogspot.com

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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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Anonymous's picture
Anonymous
Replies 1
Last reply 7/10/2014 - 2:39pm
Replies by: Anonymous

MRI, CT scans say no hypophisitis. Endocrinologist said that my adrenal insufficiency is not due to hypophisitis.  At a recent routine eye examination opthomologist told me that I have convergence insufficiency or palsy in binocular eye movement.  This explains headaches when I read.  How about the fact that the third cranial nerve, the ocular motor nerve crosses right behind the pituitary. Hypophisitis, anyone?   Eye doc doesn't want to go there yet.  I'm to do pencil push ups for 6 weeks to see if exercise can resolve this.  If it isn't one adverse reaction to Yervoy, it's another.  I know that adverse reaction(s) can mean that the Yervoy has stimulated my immune system even though I had only two 3 mg infusions. I just hope my immune system has gone after any melanoma cells in addition to just about everything else.

.

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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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RJoeyB's picture
Replies 2
Last reply 7/10/2014 - 7:05am
Replies by: RJoeyB, Bubbles

Exciting to see some activity in this area...

LUNGevity Foundation, Lung Cancer Research Foundation, and Melanoma Research Alliance join forces in first-ever research collaboration
Research into PD-1 Inhibitors to Benefit Patients with Brain Metastases
 
 

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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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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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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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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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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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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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