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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lilahs's picture
Replies 2
Last reply 10/25/2012 - 9:06pm
Replies by: lilahs, Janner

A few months ago, I posted about having in situ melanoma and whether to have the 2nd WLE.  I had the 2nd WLE and everything went well and more important, now I have reassurance. :)

I have read about digital skin imaging and how moles can be monitored (measured) to see if they have changed.  I asked my dermatologist if I should have this done and he said it wasn’t necessary.  He said that we would be able to see any changes during the exam every 3 months.  My doctor also uses a dermatoscope to look at any suspicious moles.  My question is whether I should consider having digital skin imaging.  I would like to be cautious, but at the same time I don’t need to go overboard.  What does everyone else do for follow ups?

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sharmon's picture
Replies 2
Last reply 10/19/2012 - 11:40pm

Brent has been on the GSK trial for 32 months and has had some real pain issures lately.  CT showed dark spots in the ribs and spine near where he has a large tumor in his side that has been there and has been stable.  It is still stable but the bones are now involved.  Either mets or fractures.  MRI is being ordered to find out.  Meanwhile he saw his Dr. at MDA and we found out he can stay on the trial since there is no growth.  Pain is a real bummer and his quality of life is being effected.  Taking pills for pain around the clock keeps it in check but when they start to wear off he really hurts. 

We know he can get into a MERCK anti pd 1 trial if he qualifies.  He needs blood work and a biopsy and a brain mri.  One of the things I need to know more about is the idea that the pd -L1 might need to be present for the pd-1 to work.

MDA is givng us a few days to decide if he wants to drop the GSK trial while we make up our minds. If he does drop out of the trial there is no going back on,  This trial has kept him well for 32 monthss.

The fear of the unknown is unbearable.  I have had nightmares and can't sleep.  To go or not to go.   One thought is that the GSK drug is soon to be FDA approved and if th Anti pd 1 fails and there is still time he can try that again., 

I know melanoma is now being called by some as a manageable disease.  He has been on Leukine. IPI carbo/taxol. bio chemo, mek, mek alimta..

We told ourselves we would stay on a treatment  until it stopped working or something better came along. 

If anyone has any ideas or suggestion or experience I could use them.

Praying for an answer and for all of you.

Sharon

 

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yoopergirl's picture
Replies 11
Last reply 10/22/2012 - 8:24am

will be getttting an infusion every 3 weeks with Paklitaxel and after 3 hours and then Carboplatin for 30 minutes. Yesterday I was sleeping most of the day,, today is better. Praying that this is the the one!!!! is anyone on this combo?

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EricNJill's picture
Replies 17
Last reply 11/20/2012 - 4:31pm

It's been a VERY long time since I've been here.  Losing Eric was one of the hardest things I've ever been through in my entire life.  It's only by the grace of God that I made it through the first year, but I'm here.  Today I updated the Cancer Resource List on my blog for patients who are going through treatment.  I hope you find this helpful.

http://melanomasucks.blogspot.com/2012/10/resources-for-cancer-patients.html

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It's been a VERY long time since I've been here.  Losing Eric was one of the hardest things I've ever been through in my entire life.  It's only by the grace of God that I made it through the first year, but I'm here.  Today I updated the Cancer Resource List on my blog for patients who are going through treatment.  I hope you find this helpful.

http://melanomasucks.blogspot.com/2012/10/resources-for-cancer-patients.html

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Anonymous's picture
Anonymous
Replies 3
Last reply 10/21/2012 - 11:37am
Replies by: POW, Sandy11, bikerwife

Hi everyone,

I'm new to the board. My father was first diagnosed with melanoma in 2009.
Unfortunately it wasn't caught early and he was stage 3 with a very large/thick ulcerated tumor and tumors that had spread to his nearest lympnodes.
He underwent surgery (to remove the original tumor and lymphnodes) and interferone treatment.

No signs of the cancer by 2011.

He just recently discovered some new masses in a distant set of lymphnodes.
Tests came back positive this morning for melanoma. (M1a?)
He'll be discussing the results with his doctor this evening.

My question now is, what can I do?

I know the statistics and the facts.
I know we're looking at some difficult treatment options and decisions.
I know we've got some scary "what if" conversations to have. (I'm the executor of my father's affairs/estate)

What I don't know is how I help?

He's not the kind of person who rolls over and takes anything without a fight, and for that I'm grateful. But I don't know what I can do. I don't live close to him so the things I would typically do to be supportive (offer to go to doctor's appointments, drop in to say hi, etc.) aren't an option now. I don't know how else to be supportive from a far. We're fortunate that we have other family and my sibling in the area to do the close by things, but what can I do from so far away?

 

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B-Trent's picture
Replies 4
Last reply 10/18/2012 - 10:51pm
Replies by: Swanee, Linny, michelleg

Has anyone had side effects with the Mag3 vaccine?

Monday was the first time I've taken the Mage3 vaccine without a week of HIL-2.  I developed flu like symptoms with a temperature of up to 101.

What has been your experience with the Mage3 vaccine?

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94z28joe's picture
Replies 6
Last reply 10/26/2012 - 9:54am
Replies by: 94z28joe, Swanee, Anonymous, kellygrl, NYKaren

I got a call from my surgeon thats doing my surgery on next Tuesday and said that a mole i had removed during the visit to go over the surgery to get clean margins on a couple atypical moles came back positive for melanoma. Talk about a punch in the face I was asleep when he called and basically just kind of was stunned after he told me that it was back and almost a year to the day as I found out Oct 20,2011 that i had melanoma the first time that had spread to a lymph node. I'm guessing we caught it alittle earlier this time as he said we are just gonna have to take some more off my ear on next Tuesday. I called after i gathered myself to see if they can send me a copy of the pathology report. It was just a huge slap in the face as it was a newer mole but didn't fit the abcde category he just removed it to be safe and I'm glad he did. So I'm scheduled also to see my oncologist monday morning then, pre-op monday at lunch and then surgery on tuesday fun times.

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scrapps's picture
Replies 1
Last reply 10/18/2012 - 8:43pm
Replies by: gabsound

I am currrently Stage 3a and underwent a full Lymph node dissection 19 days ago. I have a follow-up with my surgeion to hopefully remove my drains and my initial consult wwith the medical oncologisst  to  discuss where to  go from here. My dissection went well overall  with another 17 nodes taken and  all negative. So at this time all they found was my primary and micrometastases in a single  axillary node. I wass wwondering if anyone had suggestions of specific questions I should make sure to ask when I meet with the oncologist later today.  I feel like treatment options wwill be discussed but ultimately it  wwill be left up  to  me and I want to make ass educated  a decision as possible.

Wil

35 y/o Stage 3a

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sandywebb's picture
Replies 5
Last reply 10/18/2012 - 2:45pm
Replies by: Roxy1453, kylez, Anonymous

Waiting for next scan in early November for Lung Met, Showed up 2 months ago for my 5 year NED from stage 3b. If it is "real" what are my options? Have been clear for 5 years since being a 3b NED since 2007. Did the Interferon for the Complete Course and am dealing with Lymphedema on the lower right side and am having a very,very hard time coping with the possible realization that "it" is back. What is the typical approach to this?

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Waiting for next scan in early November for Lung Met, Showed up 2 months ago for my 5 year NED from stage 3b. If it is "real" what are my options? Have been clear for 5 years since being a 3b NED since 2007. Did the Interferon for the Complete Course and am dealing with Lymphedema on the lower right side and am having a very,very hard time coping with the possible realization that "it" is back. What is the typical approach to this?

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Sorry to keep asking questions about interferon, but this is the particular part of the maze in which we find ourselves just now.

Hans (stage 3B) began the high-dose treatment yesterday.  So he's only two days in, granted.  And I know that each person reacts differently.  But wow!  I must say, I'm kinda surprised at how little it's affected him thus far.  His treatment is late afternoon, and both days he had some chills after.  He came home and lay on the couch, drank some tea, and within a few hours was good to go.  Went out the barn for 1+ hour at 10 pm or so, as usual.  Got up early today and was out there working as per the norm until we left for his next infusion.  Really?!  Is it too good to be true?  Or are they doing the hydration and anti-nausea meds and forgetting to give the actual drug? ;-)  Seriously, I'm curious (as always!) to hear how it played out for others.  Is it more of an accumulative effect, or...?

Best,

Colleen

Keep on keeping on.

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bikerwife's picture
Replies 2
Last reply 10/16/2012 - 11:40pm

Hi everyone, Lynn is on his sixth month of zelobraf and is doing well. the only problem we are having is joint pain and those nasty skin issues. small price to pay for living. our problem is after brain radiation last Dec he lost from 170 to 128 he has gained back up to 134 but cant seem to gain any or get muscle mass back. has anyone got any suggestions.  we have 2nd set of scans in nov and has done well since his 2nd gamma knife treatment.

What God leads u to he will. Lead you through

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NYKaren's picture
Replies 9
Last reply 10/20/2012 - 8:43pm
Replies by: NYKaren, shellebrownies, Anonymous, aldakota22, Fen, lhaley

I went for screening today, and I am enrolled in a research study of  DPCP at Rockefeller University Hospital.  Dr. James Krueger is running the trial.  

I go for my first appointment Monday morning; they will do a biopsy on one of my many mets, ultrasound, bloodwork, photography and some other stuff.   At this appointment, they apply the medicine to a spot on each arm and on one met.  this is to see if my skin responds to it (they call it sensitizing) and I'll know if i respond by a rash.  Possibly very itchy and even blister-y.  Who knew i'd ever be wishing for a rash!

According to Dr. Krueger, in studies done in Australia, the  response rate is 50%.  Highest odds I've gotten yet.

I am cautiously optimistic and I feel lucky to be in this small study.  There will be only about 12 other participants.  The drug company, Hapten Pharmaceuticals, is small and does not have the money for a larger study/trial.  It's being funded by a variety of sources, one of which is a private foundation.  

At the same time, I will be part of a larger study (60 people) for something called a Melanoma Advanced Imaging Dermascope (mAID).  it is  new device that may predict if a skin lesion is likely to be cancerous or not.  The goal is to noninvasively predict the prognosis of a lesion to avoid the occurences of unnecessary biopsies.  Good stuff.

I'll keep you guys posted.

karen

Don't Stop Believing

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Becky's picture
Replies 3
Last reply 10/17/2012 - 12:54am
Replies by: DonW, NYKaren, Phil S

My son Ben was feeling realy sick recently...really swollen lymph nodes on his neck. He was just about to travel to Baltimore to visit friends and then to Finland for 6 weeks (he met a girl...). His doctor did a needle biopsy on his neck becuase he was not sure what was gong on. He ended up in the ER in Baltimore where they did a test for Mono.

Ends up he has Mono...goes to Finland anyway (new love) and is starting to feel better. I was so happy to hear thats what it was, as opposed to the cancer rearing its ugly head. It is weird how our perspective changes.I hate melanoma.

I read the posts daily and keep everyone in my thoughts. I am still heart broken about Kevin. Keep fighting the fight!!

 

Becky

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