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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CHD's picture
Replies 2
Last reply 8/15/2014 - 12:02pm
Replies by: CHD, JerryfromFauq

Does anyone have any idea of how effective yervoy is with mucosal melanoma?  Links to current research and/or personal experience would be much appreciated.  I am having a hard time finding anything about this.

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/16/2014 - 1:42am
Replies by: Jubes, Anonymous, Janner

Hello, I am new to the community and am hoping someone will be able to share some insight. I noticed a brown spot on the bottom of my foot last Friday afternoon. It was in a hard to see place on my right foot just beneath my pinky toe and I was immediately concerned. I've been trying not to consult Dr. Google but the little I read is freaking me out. I am 6 months postpartum with my second child and have been experiencing anxiety as it is. I know worrying isn't going to help or change the outcome but I can't help it. I'm trying very hard to be positive but I also want to be realistic. So I called and got in for a last minute appointment with the dermatologist last Friday and she biopsied it right away. It looks like she cut around it and scooped it out. She told me the results will take 2-3 weeks but I have a follow up scheduled for a week from this Friday which will be 2 weeks after the biopsy. I don't think it passed the ABCD's. Any thoughts on this? TIA

 

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liam1209's picture
Replies 5
Last reply 8/14/2014 - 8:24pm
Replies by: BrianP, tschmith, Linny, hbecker

How is Johns Hopkins in treating metastatic melanoma?  I have been recommended several specialists in the US but none at Johns Hopkins.  My dad lives in Central America and has metastatic melanoma and the top hospital in central america has a partnership with Johns Hopkins.  Would be quite convenient for my father if he could be treated through Johns Hopkins.   What are your thoughts on Johns Hopkins and is there a regarded specialist? 

Liam 

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Nell's picture
Replies 14
Last reply 8/21/2014 - 6:33pm
Replies by: Bleeds, Nell, Anonymous, Mat, BrianP, Marianne quinn, kylez, jogo

Next week I was to have a 4th  infusion of Yervoy. Diarrhea has become progressively worse, so I have been taken off Yervoy and put on prednisone. Just wondering what side effects of prednisone any of you have experienced.  Also, what happens if this doesn' t stop the diarrhea?  Then I wonder if there is a possibility that I could still have the last infusion at some point? I know only a small percentage of us will be Ipi responders, but is it still possible now that I will miss the last dose? Disappointed....:(.....also nervous because I know this colitis can get serious....Thank you for the help.....I wish blessings on all of you.

One voice can make a song; one life can change the world.

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kelvin's picture
Replies 2
Last reply 8/15/2014 - 9:47am
Replies by: Nicky, jahendry12

Can anyone tell me how serious stage 4 actually is,I know all cancers are serious,I'm a year and a half into it have had surgery's and radiation a year ago but still feel pretty crappy,

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/14/2014 - 1:17pm
Replies by: Anonymous, Janner, casagrayson

the description by my dermatologist was: dermoepidermal junction contains a primary nested melanocytic proliferation.Within the superficial dermis, discrete nests of melanocytes with slightly smaller nuclei are present. Lateral to the dermal portion of the lesion,slightly atypical melanocytes proliferate which bridge and fuse adjacent rete and are associated with a superficial fibrosis of the papillary dermis.In foci there are melanocytes in suprabasal locations with larger nests.

 

diagnosis:     Compound nevus, dysplastic type with moderate dysplasia, extending to the base of the specimen.

conservative re-excision has been advised. I am just looking for more feedback on this as this is in a region with very close proximity to lymph nodes and other vital organs.

 

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Anonymous's picture
Anonymous
Replies 7
Last reply 8/30/2014 - 8:31pm

Cancer should be classified by genetic and molecular types, say scientists

Just wondering what the proposal in this article would mean for melanoma? Other than BRAF and CKit, what would the types be?

If anyone knows something I could read to find out, please let me know.

Thanks -

Hazel

blogging at www.hazelbecker.com

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/14/2014 - 5:28am

Can anyone suggest the best melanoma specialist and the best hopital in India?

God bless you

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pigs_sty's picture
Replies 2
Last reply 8/13/2014 - 11:41pm
Replies by: Marianne quinn, eric w

Hi,

My wife has just had second infusion of Ipi and we have noticed increase in WBC and neutrophil, both by approx double. Have other Ipi users seen this, is it linked to a postivie response?

 

 

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pigs_sty's picture
Replies 6
Last reply 8/18/2014 - 2:24pm

Hi,

I'm just looking for future options for my wife. Stage 4, BRAF +ve, failed Vem and has now started on Ipi (2nd infusion) so fortunately we have PD1 and possibly TIL to try if Ipi fails. I'm just looking for things I can reasearch in to for the future. So far I have read about:

Anti LAG3

Anti GITR

Anti KIR

Can anyone help with other possible treatments to reasearch? Many thanks

 

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pasadenagirl's picture
Replies 1
Last reply 8/12/2014 - 2:40pm
Replies by: CHD

Good morning:

 

I was wondering how long it takes for lymph node swelling to go down after a SNB.  I had SNB on June 26th, two locations right under arm and right groin, all nodes were negative.  I have had no problems with under my arm, but I still have a hard bean shaped knot in my groin.  In addition as the day goes on my hip, thigh even knee will feel as if its badly bruised.   There is no swelling or redness it just feels very bruised.  

Thanks

Gwynn 

 

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Rocco's picture
Replies 10
Last reply 8/16/2014 - 2:00am

August 11th is my anniversary of being diagnosed.  Just completed 9 years of this journey - all at Stage IV. Thankfully NED since 2009.  Posting this only to give others hope.

Hang in there!

Rocco

IV since 2005, NED since 2009, Ipi responder 

Luke 1:37

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kelvin's picture
Replies 4
Last reply 8/13/2014 - 3:33pm
Replies by: kelvin, dodgedh2

Hi I was wondering if anyone can help with a few things,ever since I finishd radiation therapy for my stage 4 melanoma 9months ago I have been so tired I can sleep for days only waking every now and then for a toilet break,and have been having the madest sweats and also freezing cold chills,I have asked docs about it and they aren't sure why,also found 2 new lumps which my g.p dosnt seem to be worried about,should I be worried or am I jst being paranoid,

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BrianP's picture
Replies 1
Last reply 8/11/2014 - 11:31pm
Replies by: CHD

Most of us that post on here regularly have at one point or another recommended to a newly diagnosed member to get to a Melanoma specialist and preferably one at one of the 68 NCI designated cancer centers.  This is a great article for why that is excellent advice.  Also has interesting information about what some of the top-level cancer centers are starting to do in regards to genetic testing and "personalized" treatment.  Pretty good stuff.

http://news.yahoo.com/calling-cancers-team-155705775.html?soc_src=mediacontentsharebuttons

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robbier's picture
Replies 2
Last reply 8/16/2014 - 2:21am
Replies by: Jubes, AnitaLoree

I changed oncologist because I felt like I was in a waiting game with my old one.  Well now with the new one, same old waiting game.  I hate the waiting game.  My last appointment was July 24t.  This ws after a pet scan on July 23rd of 2014.  To make a long story short, I am diagnosied with Metastatic melanoma now.  The scan showed a abnormal finding in the right femur near the mid right of h eleg, suppected in the marrow.  then a supped area in the left public area.  My doctor wanted me to have a bone scan come back and see him then talk treatment.  I called fffffffmy new doctors office for two weeks.  To find out someone scheduled this test inOctober of 2014.  I told them no, I need this test asap. Not October.  so I go tomorrow for bone scan back to my new Doctor July 21th.  I will tell him if he dones't want to treat me, please send me to someone that at least I will fell like I  am the number one person at that point in time.  My insides are screaming, had a two day crying thing.  (Maybe it was a pity party).  I am just tired of being on the socalled back burner, and the wait and see appraoch when I have been told Ihave stage 4 melanoma cancer.  So far I have had no treatment. ''

 

The waiting on doctors is the pits.  How in thew orld does anyone get through the wiaitng on doctors without falling apart.  I failed apart waiting.  Arg!!!!  Thanks for letting me sound off.

 

Robbie

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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