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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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.

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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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RJoeyB's picture
Replies 11
Last reply 7/14/2014 - 4:03pm
Posting this as a conversation-starter and also trying to educate myself so if the time comes, I'm not scrambling to ask these questions.  My profile has my background, but long story short, I was diagnosed four years ago (yesterday, in fact) and found to be Stage IV within two weeks of diagnosis.  Very early on, prior to moving forward with a TIL trial at NCI/NIH in Bethesda, I considered a PLX4032 trial at the University of Pennsylvania (PLX4032 became vemurafenib/Zelboraf and as most of us around here know, was approved in the summer of 2011 by the FDA), but was told even by the top person at Penn that if I was eligible for the TIL trial, that was my best option at the time.  (To confirm, I am BRAF-positive).  We've been through a lot since then, with partial responses to some combination of the TIL, IL-2, and ipilimumab, along with many surgeries and courses of radiation.  
 
All throughout, I've continually educated myself about what else is out there, so consider myself pretty informed about immunotherapy, checkpoint inhibitors, targeted therapies, and the roles of more "traditional" surgical and radiation options.  However, as the targeted therapies have evolved quickly, with both Roche's vemurafenib/Zelboraf and GSK's dabrafenib/Tafinlar approved as BRAF inhibitor monotherapies, GSK's trametinib/Mekinist approved as an MEK inhibitor monotherapy, and of course dabrafenib and trametinib approved as a combination therapy, I've found that the guidelines for how these options are being selected are vague, which leads to a number of questions:
 
1) Vemurafenib vs. dabrafenib?  Has one shown superiority to the other?  Are doctors prescribing them equally and/or what criteria are they using to select one or the other?
 
2) Monotherapy vs. combination therapy?  Given the approval of the combination therapy, are there still reasons to start with a single agent (either of the BRAF-inhibtors or the MEK-inhibitor)?  If so, what are they?  Perhaps the approval of the GSK combination is driving additional market share to dabrafenib?  (I know Roche and Exelixis have their own MEK inhibitor, cobimetinib, in trials)
 
Again, for now, we have kept the BRAF/MEK targeted therapies in our proverbial back pocket and will cross the bridge if and when we reach it, but it seems that the playing field has become very muddy as to the best use of these options.  It's probable that there still aren't any real answers, yet; that those of us here are the ones ultimately providing answers through participation in trials and use of these new therapies, but if anyone has any insight from their own experiences, I think we could all benefit from hearing.
 
Thanks,
Joe
 

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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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brittanyx's picture
Replies 28
Last reply 7/12/2014 - 6:33am

I have read SO many mixed views on Interferon. I'll be starting it soon for year, 5 times a week for the first month, and 2-3 times a week for the rest of the 11 months. Lately i've been reading that is only "prolongs" the cancer, not getting rid of it for good. Has anyone done it and have been clear? Also I don't understand how it is supposed to help. One person described it as your immune system fighting it. If that's the case why are there all these bad side effects that make you sick? I'm 19 and I don't want to be sick for a year and  have it come back and I did it for nothing. I know no matter what there's always that chance, but like I said lately i've been reading that it only prolongs it. I'd love to hear everyone's personal experiences. 

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brittanyx's picture
Replies 1
Last reply 7/6/2014 - 9:56pm
Replies by: Fen

I'll be doing the interferon treatment fora year, 5 times a week for the first month and 2-3 times a week for the rest of the 11 months. I'm scared for the side effects. I'm trying to figure out ways to keep megoing when it's hard and stay focused and I thought being in contact with people that have done interferon or doing it right now may help. So if any has done or is doing interferon, I would love to talk you and keep in contact. 

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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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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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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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Replies by: hbecker, Ed Williams

Hi everyone, 

My fiancé has just gotten a melanoma diagnosis: Breslow 1.15, mitosis rate 1, no ulceration, Clark's either 3 or 4 depending on which report you look at, located behind ear, tumour removed with clear though very narrow (3 mm) margins, no symptoms, bloodwork and abdominal ultrasounds all clear. We are meeting this week with the surgeon who will do a WLE and SNB. 

I'm trying to come up with questions to ask at this meeting. I don't want to waste the doctor's time, but I also want to use this opportunity to understand the info that's coming at us from all the reports. Any suggestions as to what are useful questions to ask here? So far I've got:

1. The primary tumor was completely excised a couple of weeks ago (by a family doc who thought it was just a mole). Will that excision change the lymph drainage patterns? In other words, does the removal of the primary tumor affect the accuracy of the SNB?

2. The location behind the ear seems to make it difficult to get the complete 1 cm margins, especially in depth  (there's really just bone under the skin there). Is this going to be a problem?

3. When would the doctor recommend a complete lymphectomy? Does the location on the body have any bearing on next steps, if the SN is positive?

4. Is it possible to do testing for the BRAF mutation, either from a positive lymph node (if one is found, which we really hope not) or from tissue from the WLE?

Any other things I should be thinking about here? 

 

Many thanks in advance. 

 

 

 

 

 

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Anonymous's picture
Anonymous
Replies 3
Last reply 7/5/2014 - 3:46pm
Replies by: Bubbles, Socks

I'm a little confused about this, I know it limits some treatment options. Is this a good thing or bad , does it changes recurrence chances.

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Anonymous's picture
Anonymous
Replies 5
Last reply 7/6/2014 - 5:59am
Replies by: Kim K, Anonymous, washoegal

CT found questionable areas on chest wall and axilla, surgeon said too small to worry about. This exam I found small enlarged nodes by my collar bone - again surgeon said too small to worry about. I'm thinking of just opting out of scans and visits until something just jumps out. One year out from initial dx IIIB, mitosis 18, one positive lymph node.

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Anonymous's picture
Anonymous
Replies 8
Last reply 7/6/2014 - 5:09pm
Replies by: Anonymous, Janner, CHD, washoegal, Fen

Hi everyone!  I have posted on here several times.  I will be honest- I'm panicked.  My hip has been aching for about two weeks and I'm afraid it's bone mets.  I'm currently stage 1b, but I can't get over this fear.  I've only been diagnosed for since the beginning of April.  I may just be paranoid, I don't know.  It's like an achey feeling- sometimes feels achey in my back too.  The other piece is I have a 5 month old baby too- she is our first and I don't know if any of this is from her- even though it's just now starting to feel achey.  Thanks for your thoughts.  I hope all of this makes sense- :)

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