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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jag's picture
Replies 6
Last reply 9/12/2010 - 8:51pm
Replies by: bill58, jag, Kevin from Atlanta, Bonnie Lea, Anonymous

So there I was sitting in my room at Sloan itching to get out post surgically, somebody comes to the door and asks if I would be interested in "musical therapy"? I looked at Merry, and thought hey why the fuck not?  So in comes a woman with a ton of musical instruments, mild mannered, calm, friendly, yudda yudda, yudda.  She starts into the whole Kumbaya, guitar thing and we roll our eyes and humor her pretending like it is soothing, whatever.  Next thing you know she brings out the "ocean drrum"  Never heard of it before.  Basically it is a drum with BBs in it.  Coolest thing, I have ever seen.  There is a clear view to the bottom of the small cylinder, the BBs roll over the surface of the drum, you can watch them as they go.  Not only is it mesmerizing, it actually sounds just like the ocean, or a heavy rain.  If you concentrate on it, you can work on a regular pattern, even that though becomes irregular, just like the real ocean, watching the BBs swirl is like staring at a campfire, definitely great if you need to sit and think.     

Also comes with a cool drumstick which I use to scare the hell out of Biscuit.

 

Insert Generic Inspirational Motto Here

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BillMFl's picture
Replies 3
Last reply 9/13/2010 - 2:02am
Replies by: Jocelyn, BillMFl

Peter, a very long time waiter at DeMillo's rememered you and said you were always a hoot. Or was it a snoot?  :)

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Brandi's picture
Replies 5
Last reply 9/15/2010 - 8:50am
Replies by: W., Brandi, Janner, DonW

Hi all,

I was just dx'd with having melanoma last week. Two lesions one on my rib cage is in situ, the other on my inner calf is malignant spitzoid melanoma. The questions I have are the following: spitzoid melanomas are very rare? I have done a lot of research and to say the least data is conflicting with these types of melanomas. My patho report showed a lesion 1.6mm, Clark's IV, Growth phase vertical, mitotic rate=0, TIL's non-brisk, Regression absent, ulceration absent, perineural invasion absent, lymphovascular invasion absent, margins uninvolved but melanoma is present 3mm from the nearest margin, satellites absent. Does anyone have any idea of what the heck this all means. I know all of the technical jargon and I know how to interpret these different diagnostic factors but what I don't know is does this patho report sound good? It does sound pretty hopeful to me due to the absence of so many factors. I have done a lot research with regard to pathology of these lesions and I see nothing that mimics my report in the least. I was just curious what you all might think being that you have been dealing with this longer than I have. I have been making myself crazy trying to figure all of this out. I am a nurse so Type A would be an understatement LOL;). I have an appt this Friday with an oncologist who specializes in melanoma and I realize he can answer all of these questions but if I can talk to someone before hand I think it would ease my mind. thanks in advance for any comments you all have to offer. I wish you all the best with your dx's as well.

Brandi

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TinaR's picture
Replies 14
Last reply 9/14/2010 - 10:19am
and haven't been sleeping well---can't stop thinking about this past weekend and feeling awful. My heart hurts for the family that lives a couple doors down. Well, hurts for the mother and the son...but I can't seem to muster anything but disgust for the husband. I know it's not right...but I can't help it.  The mother committed suicide on Friday. Our street was blocked off by police cars and ambulances for hours while the mom was barricaded up in her bedroom . People were running all over...policemen, children, neighbors...I had no idea what was going on, but I knew it was bad. When I was able to drive back to my house- I didn't go out or hear anthing again...until it was all over. By 7 that night- we learned that our neighbor was dead.
 
 She had been in horrible pain since a botched back surgery a six years ago...unable to repair. She used a walker and you would always see her trying to make it up the street with her mini wiener dog...rain/sleet or snow.  She couldn't do much of anything...not mow the lawn, shop, stand for more than a short walk up the block...or even bend to garden.  The day before she died she told her next door neighbor that she wished she could be "normal". 
 
Apparently-  earlier this week her husband said he was going to leave her. Ah. 
 
I can only imagine how frightened, frantic and desperate she was...what was she going to do? She was 47, a stay at home Mom .  How would she live/work/take care of herself and  her child- she could barely move . She had somehow purchased a gun-- this a couple of days ago. She left a suicide note and a middle school boy . As the police were trying to figure out what was going on--her son was in there.  It was so confusing and I didn't know what was going on as I pulled into my street with my daughter and her friend in the car - we were stopped by the barricades and police.  At that moment, another of our neighbors was running from the house covered by a policemen...taking son to her home to get him away from it all. It was so strange as I looked over on their lawn... the  husband was sitting, stretched out on the lawn, with a policeman standing over him ...waiting until the wife was finished so they could go inside ( this -I don't understand at all). The police didn't go inside because they thought she would shoot them? 
 
How awful the afternoon must have been, the son when he came home from school --  the mother was still alive at the time?- why else would the streets be blocked & the police and people running everywhere. That poor boy's life is forever scarred. The picture of that husband sitting on the lawn  ...just looking around like it was any other day bothers me.  I keep going round and round in my mind---her pain and the desperation, her little boy .
 
On return from the grocery store today  I started to cry, again....because their garage door was open----that man is in there...the one who was going to abandon that frightened, broken woman and it makes me feel awful. For better or for worse...I guess he just didn't get it. Does he have her child in there? 
 
What's even more bizarre...this is my second suicide experience in 2 months. At least, this time ,I didn't see the victim. Even with that gruesome turn of events, the first one didn't affect me as much as this ...and it's  odd because I knew the first person very well. I was angry at the victim in that case and overwhelmed with another difficult situation at that point.   Maybe it's all coming together, now, because I'm just emotionally sick and hyper focused on the sadness of this  poor woman and her son. I'm going to lie down next to my daughter and stare at the ceiling until 6 a.m.

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Replies by: Amy Mason

Across the US, 750,000 individuals are living after a diagnosis of melanoma, and they and their 2 million first-degree relatives can play a huge role in public education. On Saturday, September 25, the Melanoma Foundation of  New England is holding its first-ever planning conference for patients and their families interested in public education outreach. We need your thoughts on how to build this network and create an action plan.

Course Directors: Alan Geller, Harvard School of Public Health and Deb Girard, Executive Director Melanoma Foundation of New England

Date: September 25, 2010
Time: 10am-2pm
Location: MIT Endicott House, Dedham, MA

To attend please RSVP to dgirard@mfne.org, call 978-371-5613 or visit www.mfne.org. There is no charge for the conference.

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jag's picture
Replies 2
Last reply 9/13/2010 - 7:40pm
Replies by: jag, TinaR

Listened to this again, the other day, book on tape I first listened to as a young vet.  Amazing how it can be applied to virtually any situation that deals with change!

Hem

formerly of Cheese sector C.

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Kimmer's picture
Replies 2
Last reply 9/13/2010 - 7:51pm
Replies by: jag, LizzM

Just read your response on the on topic board...

I will always stand in awe of your strength.

Love you bunches, K.

And remember, no matter where you go, there you are. Confucius

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dian in spokane's picture
Replies 6
Last reply 9/15/2010 - 8:52pm

Today I opened the site and found I was still logged in! YAY! thanks so much.

I have noticed this week that most people aren't logging in (probably because of his problem) So maybe now that it's fixed, we'll start to see a little more member activity.

Thanks a lot,

 

dian

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n

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dian in spokane's picture
Replies 22
Last reply 9/16/2010 - 7:44pm

okay...so, obviously things are not fixed yet if both jerry and linda are still having problems logging in.

I know that the 'regular' members are down, but I'd like you ALL to clock IN on this topic and telL us.

If you choose STAY LOGGED IN as an option, are you staying that way? or are you having to reintroduce your information each time you open the page?

There are consequences to this.

you may read the board if you are not logged in, but if you try to post, you may only post as anonymous, unless you log in.. You can NOT get into chat if you are not logged in.

I think MANY people are just hopping on and reading the first few topics and not replying..

so fewer and fewer people reply because they don't want to go to the trouble of logging in

and of course no one comes to chat because you cannot get there without logging in.

please log in long enough to tell if this is an issue for you.

DO YOU HAVE TO LOG IN EVERY TIME YOU VISIT? OR IS THE SITE SAVING THAT AS A PREFERENCE FOR YOU?

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Bonnie Lea's picture
Replies 6
Last reply 9/15/2010 - 5:37pm

But I simply have to add to the recent news that has made me so happy!   Just got a call from the surgeon I had for my recent axilla surgeries.  Both sides are NEGATATIVE  even some dug out lymph nodes.

 

I am assuming that all sorts of beast stuff was searched for and the whole hunk'o'bonnie is clear of any cancers!!!   Now just to get over one of my worst pain things yet in my opinion, though doctor says different!

Our mothers were right when we heard tales of  "be careful when you shave your armpits'  you do not want a nick there.  Well unfort both my 'pits' have 6 inch nicks attached the the already lines from the bilaterals   BUT I AM SO HAPPY!

And John.... kitties sniff scars too!  they (mine) know it hurts I think from my outbursts and they tap me on the chest front, and stare at my pits.  Don't think I would like them to get all  'licky'   ewwwwww  (a head is different though)

 

wink

Just Keep on Hanging In

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jag's picture
Replies 4
Last reply 9/16/2010 - 8:59pm
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Jerry from Cape Cod's picture
Replies 6
Last reply 9/19/2010 - 9:30am
Replies by: TinaR, Anonymous, kwahlbin

Anyone else having problems retrieving posts from the archive search.  I just did a search and tried to open the post.  The browser brought me back to the NEW forum.  I hope that's a temporary problem otherwise we have lost our best resource....

Jerry from Cape Cod

It's about kickin' Melanoma's butt! "Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

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bcl's picture
Replies 2
Last reply 9/20/2010 - 10:48pm
Replies by: bcl, LV

when I first saw this pic I remember thinking it was odd,  the guy in front was just sashaying along. - how  did he keep the lead at that pace. Now I see he didn't.. wonder what twit thought this one up.
http://ca.news.yahoo.com/s/yahoocanada/100917/canada/egyptian_paper_doctors_photo_of_mubarak_and_obama

 

 

 

warning, swearing follows

I am sickened with the goings on up here. Last weekend in BC a sixteen year old girl was drugged and gang raped, photos have gone viral. The girl has physical injuries. I have heard some of these poor victims do not remember their experiences, except for the trauma to their bodies -that's obviously horrific enough - but this girl has it in stereophonic. And may have for the rest of her life. I really thought that was the limit, but just now, when I went to find the story I see local students are supposedly arguing whether the drugging and violent assault of a girl counts as rape.   W    T    F   Lack of empathy ( or whatever this is) is on the rise and it makes me want to f'n scream.

 

http://ca.news.yahoo.com/s/capress/100917/national/rave_gang_rape

 

 

 

 

 

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