Off-Topic Forum

The MPIP Off-Topic Forum is a community bulletin board that provides the melanoma community with a safe space to share experiences and to give and find support from others who can relate to having or caring for someone with a melanoma diagnosis. Please note: if you have an urgent question about melanoma to ask the community, visit the main MPIP Forum.

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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BillMFl's picture
Replies 2
Last reply 9/30/2013 - 11:37am
Replies by: BonnieLea, KyCyn

waving hello at ya !

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Aimileah's picture
Replies 3
Last reply 8/28/2013 - 5:35pm
Replies by: Aimileah, Dick_K

Hi I'm new to this site so not sure if this is the right place to voice my concerns but I hope you can help. I'm a 28yr old female and for the last year at least I have had a small flat brown mole on the sole of my foot. However recently I have noticed it has grown slightly and has a small white area in the middle of it. Should I be worried? I mentioned it to a nurse practioner a few weeks ago and she just said keep an eye on it? I should also mention my grandad had skin cancer at a young age and that I'm a very fair redhead! Any advice would be great thanks x

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On September 22, 2013 the “7th Annual Miles for Melanoma New Jersey” event takes place at Ginty Field, Morris Township, New Jersey; it’s a 5K run or I mile walk.  NYU has a team, “NYU Fights Melanoma” and you can join it.  You can get to the event through the MRF site or go directly using this link.

http://events.melanoma.org/faf/home/default.asp?ievent=1066302

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jag's picture
Replies 2
Last reply 8/7/2013 - 12:01pm
Replies by: Janner, jag

Hi everybody!

 

Meredith and I are starting what will hopefully be an annual event, maybe we will even get more people to join us as the years go on.  This year we are going to be in an event that raises money for cancer by making us walk 5k around Yankee stadium.  Thats right, all of the stairs and a lap around the field,  You can donate on either one of our pages, 

 

My wife is 

http://runyon5k.kintera.org/meredithre

mine is

http://Runyon5K.kintera.org/gallagherjohna

 

 

If anybody would like to join in with us, you can create your own team, or join ours, (blackmoles).  Just watch out for all of the syringes from A-rod when you pass 3rd base.-you might even get to watch me being passed by a grandma and a little girl since I only have 1 lung and my left leg coordination is all screwy from the brain surgeries I've had.  The great thing about Damon Runyon, is that it doesn't raise money for any specific cancer research it gives grants based on the best researchers for all different types of cancer.  Jedd Wolchok(our oncologist), of Memorial Sloan Kettering once received one of these grants and that turned into a new and better FDA approved treatment for melanoma. (Yervoy)

 

The first 10 donors get a shamwow, and especially big donors will get a PBS tote bag with a Ken Burns CD collection.  Donate within the next 10 minutes and we will even throw in a Slapchop!   

 

Best to everybody and back to the more serious matters at hand  which is you doing your best to kill the beast.

 

As for updates on me, I'm 5 years out with no evidence of disease 40 years old (was especially happy to make it to 40, as that made it 10 years since my diagnosis (30th birthday).  Meredith and I have a son named Jedd, he is now 15 months old and already much more mature than his father.

Meredith and I run a successful mobile veterinary business, and my current treatments are just daily antiseizure medication which I am currently weaning off of.  I thank God for the gift of life every single day.

 

 

God Bless everybody in their battle

 

John/Elmer Fudd (yep the guy nobody liked from the DS.)

Insert Generic Inspirational Motto Here

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Meagan's_mom_Claire's picture
Replies 10
Last reply 8/3/2013 - 6:21pm

Have been trying to email her and haven't heard back. If someone can let her know that Claire and Meagan are looking for her, my email address is keepingbusy73@yahoo.com
Thanks

Live life as normal as possible

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dhrahn's picture
Replies 1
Last reply 7/28/2013 - 12:07am
Replies by: JerryfromFauq

Hi everybody - My husband was diagnosed 1 year ago with Stage IV melanoma.  He has been on zelboraf for a year and we had some awesome results but both adrenals are tumors and have started growing again as of last week ct scan.  Devastated, yes.  This last year was almost surreal because my husband was feeling overall really good.  Our oncologist has now presented 2 options...  yervoy or clinical trial.  What do we do?????  We are heading up to Angeles clinic in Santa Monica this Monday and then plan to fly out to Moffitt but I questioning if we should stick with yervoy..... As all of you know this is all so overwhelming.  Any advice would be greatly appreciated. -Holly and Dave

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bridges's picture
Replies 1
Last reply 7/28/2013 - 12:03am
Replies by: JerryfromFauq

Melanoma is a kind of skin cancer which is highly dangerous as stated by many health experts. What are the signs to look for Melanoma ? I am trying to find numbers of signs and symptoms of Melanoma. Can anyone share some details on the subject ?

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Replies by: JerryfromFauq

People are missing the Main MPIP Melanoma Bulletion Board and not getting responses.   Click on the "GO TO MPIP"  problem is the splitting of

I'm me, not a statistic. Praying to not be one for years yet.

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Story at-a-glance
  • An unapproved strain of genetically engineered (GE) wheat has been found growing on a farm in Oregon. The finding now threatens US wheat exports as many countries do not permit the importation of GE wheat
  • Japan has canceled orders for US wheat in response to the findings. Other major wheat importers are monitoring the situation, and the EU has ordered member states to test imported wheat for contamination
  • The House Agricultural Committee will soon vote on an amendment that would lend support to a potential nullification of states’ rights to label GMOs. Your urgent action is needed!
I'm me, not a statistic. Praying to not be one for years yet.

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gaby's picture
Replies 3
Last reply 6/13/2013 - 3:01pm
Replies by: gaby, wpneuma, POW

Hi! My husband (38 years) was diagnosed with melanoma (ankle) in june 2012(Breslow 2.3 mm without ulceration, less than 1 mm2 mitosis), we are living in hell, unfortunately the result of the sentinel node biopsy (groin) gave positive 1/4, so he hada surgery on groin node dissection and lymph node biopsy in the stomach, all clean.

Doctor offered interferon pegylado (new treatment) or wait and watch, my husband started on 29 October with pegylated interferon treatment as adyudante.Treatmentis difficult,has many side effects. Bothafraidthat melanomareturnsand not realize

Please let mehaveyourexperiencewith stageIIIaandpegylatedinterferon.

Iam verysad and depressed. Also wantedto knowif themelanomabringssterility, because we weretrying to haveour first childandwe could notbecausethe doctor dida semen test andreturn resultswerebad.

Thanks.

gaby

 

 

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My Mom is 79 years old and she was diagnosed with a recurrence of Melanoma yesterday.   Her story with Melanoma has been a couple of years.  About 4 years ago she had some Melanoma on her right arm.   It was determined by a surgical oncologist to to a wide cision graft.  Unfortunately it came back and last year at this time they did it once more.  This past January she broke her leg and we sort of forgot about the Melanoma (my fault) and it was not until the weather got warmer that I noticed it was back.  She thought it was scar tissue as she noticed it nine months earlier and pointed it out to the surgical oncologist who said it was probably scar tissue from the latest graft.

 

I am scared to death for her.  Tommorow she gets an MRI and Thursday she is getting a PET Scan.   What confusing me is the doctor did not do a biopsy he is assuming that since that is the sight of the previous melanoma that this would be a natural conclusion.

 

Has anyone heard of scar tissue that masks itself as melanoma?

 

 

Jim

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patrick mccarthy's picture
Replies 2
Last reply 6/8/2013 - 3:43pm
Replies by: patrick mccarthy, POW

Hi everybody I'm new here. My brother been diagnosed with stage 4 melanoma he also has an 8any help NM brain met where do we start?

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MarieM's picture
Replies 6
Last reply 6/4/2013 - 10:46pm

Hi all...

 

After getting an "in and out" phone message in my voicemail a few weeks ago.....and calling Dian back twice.....I finally got in touch with her tonight...

She says to say HELLO to all of you!!!

She is doing really well. Her physical therapist and occupational therapist are amazed at how well she is doing! She sounds GREAT to talk to...but is having some deficits. Typing and reading.....hence she is not here. And her music which she IS playing is having some deficits. She says though, that the melanoma can't be found!!! :~).

Bob just bought her some software with a microphone, so she will hopefully be able to figure it out and post herself. I for one miss her!!!!!

Love you Dian~

Hugs, Marie

Oh...she sounds WONDERFUL on the phone!!!!

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Nad T's picture
Replies 4
Last reply 6/2/2013 - 11:01am
Replies by: Nad T, BillMFl

Hey, DT here.

You with us?

Have lost contact with everyone.

Just hit 40 with The Indian. Thunderbird.

Wish I could post pictures. Emerson 10 and Nat 7. Do you have any doubt that they get love from us? Fun.

Just wish they had some tough times to make them stronger. Sadly those times may be coming with that pri*k Bill as our next President

dethomp@hotmail.com

Call me.

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/28/2013 - 5:24pm
Replies by: Janner

My father was diagnosed with Stage 4 melanoma in his lungs (very small spots) in early 2012. He was going to Sloan Kettering and was put on ippi.  There wasn't much reaction to it initially so then he then transferred to Yale (closer to home) and was put on PD-1.  Over the course of a year about 85% of the tumors shrunk which was wonderful news.  However in his latest scan 3 spots on his ribs/chest popped up.  The dr is now taking him off of PD-1 and putting him back on ippi.  Has anyone had a similar experience?   

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