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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Gordknight's picture
Replies 2
Last reply 1/13/2015 - 6:19pm
Replies by: Gordknight, DZnDef

So in October I had a tage 1a melanoma removed from my neck.  Surgery went good.  Didnt need a lymph node biopsy and the scar is healing nicely.

Well a few days ago I noticed a somewhat ingrown hair just outside of the border of a mole on my arm.  A mole that my derm said looked fine but it always looked kinda odd and big and out of shape to me.  Anyway, I picked at the ingrown hair which again is not on the mole itself.  It bled a little and Iet it alone.  Now today I noticed that the whole area is still irritated, bleeds a little bit feels like it is raised underneath, but the BIG red flag is there is a new black spot within the mole  On the part of the mole that is furthest away from where the ingrown hair is.  

I immediately called my derm and I have an appointment on Thursday, but needless to say I am freaking out.  I am 100% sure that black spot was not on the mole a few weeks ago.  Since my mel diagnosis I watch my moles like a hawk.  Is it possible for a melanoma to grow this fast?  I hate this.  I know not all mole changes mean melanoma but my mind just cant think of anything else now.

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StephyD83's picture
Replies 8
Last reply 1/15/2015 - 3:05am

Hi everyone-

I had posted last week regarding new symptoms that I have been having as far as having a foggy brain & a headache that has lasted for 5 + days. I went to the Dr. yesterday & she performed a bunch of test & said that I failed a few & she needed to order a MRI STAT to rule out Brain Mets. I am very concerned at this point.

How likely/possible would it be that it has treaveled to my brain? History-I was Misdiagionised 2 years ago I actually had Stage 1A with margins involved that was not re-excised for 1 1/2 years then I had only 5mm margins removed in March 2014 & to date I have not had the other surgury for the additional 5mm yet.

Any advise would be great.

 

Thanks!
Stephanie

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Jsneathen21's picture
Replies 8
Last reply 1/14/2015 - 6:10am

Just asking for prayers today I have my sentinel node biopsy and my skin graft after they remove the melanoma. Thanks everyone

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rick1981's picture
Replies 6
Last reply 1/15/2015 - 6:51am
Replies by: Wader, Bubbles, Mat, Anonymous, democat

(I'm not basing the combo with my last two topics, these just are new releases that are hopefully helping others)

New research on the combo:

http://www.eurekalert.org/pub_releases/2015-01/hlmc-mrd011215.php

Moffitt Cancer Center researchers have discovered a mechanism that leads to resistance to targeted therapy in melanoma patients and are investigating strategies to counteract it. Targeted biological therapy can reduce toxicity and improve outcomes for many cancer patients, when compared to the adverse effects of standard chemotherapeutic drugs. However, patients often develop resistance to these targeted therapies, resulting in more aggressive cells that can spread to other sites or cause regrowth of primary tumors.

Moffitt researchers found that patients who are on B-Raf inhibitor drugs develop more new metastases than patients who are on standard chemotherapy.

They found that melanoma cells that are resistant to B-Raf inhibitors tend to be more aggressive and invasive, thereby allowing the tumor to spread to a new organ site.

My wife has had a good benefit from the combo when she urgently needed them to work. However, she came out of the treatment (when resistance occured) with new and aggressively spreading mets - so although N=1, this does sound familiar and makes me regret in hindsight that we didn't move to immonutherapie before resistance occured.

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New research unveils drivers for early resistance against this combo:

http://www.nature.com/ncomms/2014/141215/ncomms6712/pdf/ncomms6712.pdf

 

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I've been taking 5mg oxycodone pills for a couple months now for the pain. That was via my medical oncologist.

Today my radiation oncologist prescribed this Fentanyl patch.

i assume it won't hurt the affectiveness of Keytruda Pd1?

Any other major concerns I should have? It seems like the side affects I've read are similar to oxycodone. But since it is a skin patch and I have melanoma I'm like huh is this really what I should be doing.

Thanks.

Artie

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TSchulz's picture
Replies 9
Last reply 1/15/2015 - 11:37pm

It has been a long time since I have posted here but my life has been touched by people dealing with melanoma several times in recent weeks and I thought I'd share my status.   

I received the "standard" protocol of TIL at NIH in May of 2012.  I had an amazing response to treatment and was declared NED about a year after that.  My wonderful NED status has continued without a bump in the road.  Because things had progressed so well following treatment, my wife and I (being encouraged by my doctors saying that I should expect to be around awhile) decided to try to a second child.  We welcomed a beautiful baby boy into our family in early November. 

Almost every day I think about my time dealing with melanoma -along with all those dealing with it today.  I wish you all the best year in whatever phase you are in: Having it sucks, loving someone who has it sucks and getting over having it isn't easy either.  And to all those who are supporting someone out there - you rock! 

Happy 2015.

Troy

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democat's picture
Replies 16
Last reply 1/13/2015 - 1:38pm

I just need to vent.  I just went in for my semi-annual CT scan and was told it would be 4-7 days before I get my results. That's a lot of extra stress. Is a 4-7 day wait out of the ordinary?

 

Roxanne

Stage IIIa/IIIb

since 1/2013

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Twistermom3's picture
Replies 1
Last reply 1/12/2015 - 4:53pm
Replies by: Julie in SoCal

I had my first check-up after a WLE in October on my back for an in situ melanoma and full body check. The dermatologist described the scar on my back as keloid. It is irritated. The MD suggested steroid injections and I declined. The thought of annoying the scar more made me shudder. The scar is slightly raised . Has anyone done this for a scar?

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Replies by: Anonymous

You 0 and now the rock Newman show folks welcome back this is our last our today September the seventh from busboys poor slice and use Rome my guest in this hour doctor john Ellis %ah you heard me say before to edge up professor the University of the Pennsylvania School of Medicine Department of Anesthesiology dynasty the logy and critical care of Harvard University graduate of Harvard University we affectionately called the White House we Cleanse EFX don't call howardto the black harbor which I stock john tells weapons welcome tithe rock dude so rocket is a pleasure to be here to pleasure to be a BC I have three sisters who live here 10from graduated from up Howard University man who remembers you with an RA from back in the day okay but you can't go back that far picket um uncles ones extended family I grew up in New York upcoming all my life many wonderful love family meetings anddinners here in busboys & poets with pleasure to be here great to have you arm thesis your story is a is truly a fascinating story there's much to talk we have we have an our body goes by terribly fast ohm so I want to get into really many things up part what I'd like to do is um is to get into love your background inters of arm you re: person today that has an incredible message you by example in a whole lot to folks talk the talk but docs John Ellis hashes walked the walk at one point let me ask you what was your highest week my house where it was $3.37 337 a6-foot-2 62 okay so 337 and we'll talk a littleabout BMI that's.

http://www.xfacts.com/cleanse-efx-review/

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Ksprin's picture
Replies 2
Last reply 1/13/2015 - 4:43am
Replies by: JustMeInCA, Wader

Hello! I'm new and my names is Krysti. Can anyone recommend melanoma specialist in the Bay Area? Thanks!

Krysti flynn 

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AshleyS's picture
Replies 3
Last reply 1/12/2015 - 9:52am
Replies by: jbronicki, ncdaniel, JoshF

I'd appreciate advice for a melanoma specialist from MD Anderson.  I'm going there for a second opinion. Thanks!

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Question on surgical margins. Since I'm most likely looking at recurrence in right cheek, the head & neck surgeon conferred with my medical oncologist on margins and have decided they will go with 1cm. I had asked her to consult with surgical oncologistwhi specialized in melanoma I consulted with in past and he feels that's unecessary. Couple of things he said:

1) Suture Granuloma is possible or other odd looking tissue that formed nodule. If that's the case, aggressive surgery planned is not necessary.

2) Even is it is recurrence taking 1cm won't change prognostic factors as much as more metastasis would or recurrence in lungs etc...

He said he would do surgery if I want but have to wait until 21st and said surgery Tuesday is an emergency...my choice. This puts wrinkle into everything...I trust all my doctors and asked them to discuss the surgical plan and next steps which I hope will happen tomorrow so I can decide whether to go in Tuesday for surgery with ENT or do consult with sugical onc with surgery following week.

Anyone have similar experiences? What did/would you do?

Also anyone out there who reads this have a suture granuloma? Was it painful? Was it nodular?

Or nodular lump by scar that looked odd on CT/MRI and it turned out to be benign? 

Josh

Let's work for better treatments....for a cure!!!!

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misenber's picture
Replies 4
Last reply 1/14/2015 - 9:48am
Replies by: misenber, Anonymous, Janner

Last week I was told that the mole I had removed from my back was melanoma and is Clarks Level 2, less than 1 mm.  I was to havethe spot removed tomorrow, but the surgeon called and told me they have to postpone because after speaking with the pathologist, he is going to have to remove a lymph node and test it and wouldn't have the eqipment available for another week.  I am, of course distraught, but also very confused. I researched the Clarks Level 2, but can't coordinate it to the Melanoma staging, which seems to give more specific information about treatment, seriusness, prognosis, etc. I have not yet seen an oncologist, I am dealing with a general surgeon who will refer me to an oncologist after the surgery. I am 63 years old and this is my first diagnosis of melanoma. Can someone point me to a good place to get straightforward information that is easy to understand?

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Tracey R62's picture
Replies 5
Last reply 1/11/2015 - 10:33pm

Question on gene mutations and treatment. What would you believe to be the best treatment for melanoma if one DOESN'T have BRAF or a CKIT mutation or the other more common one?

Iam going in for surgery to remove my toe and my left groin lymph nodes Tuesday and just weighing my treatment options.  Sorry I don't have any more information, I am waiting on the actual report to be emailed then having the medical oncologist interpet it.  I just wanted some patient feedback.  Thank you.

Tracey R62

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