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.

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Wentworth Miller's picture
Replies 12
Last reply 7/10/2014 - 12:16am
Replies by: Rolaure, Julias, jhnjohn, Anonymous, gigiwill, angelahill, lilywen

There are some photos in my iphone and I have to transfer them to my pc for editing. So I synced my iphone to computer and open itunes. Normally the pictures will appear on itunes but this time the folder was empty! I really don't know what's going wrong! Could u pls help me...

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SarahS's picture
Replies 2
Last reply 4/9/2012 - 10:30pm
Replies by: Anonymous, SarahS
Hi everyone,
 
Hope you're all doing well this Friday afternoon. I don't post here as often as I used to. I mostly posted back in 2006/2007 when I was going thru treatment for stage 3 melanoma. I pop in every now and then to see how everyone is doing and I comment if I can help. Anyway, on a happy note, I just celebrated my five-year cancer-free milestone, and feeling great!
 
I'm posting today because my husband, Jason, is taking part in the American Cancer Society's Shave to Save event this year here in Kansas City. For those not familiar with Shave to Save, basically the event raises funds for the American Cancer Society's Hope Lodge of Kansas City. The Hope Lodge is a facility here in Kansas City (there are actually a few others around the country as well) that provides free, temporary housing to cancer patients and their caregivers during treatment. The guests who stay at the Lodge are from all over the country (but mostly in the midwest), so you can imagine the amount of money the Lodge saves those fighting cancer. Some guests stay there upwards of 3 months or more while undergoing treatment. I personally volunteer there every week and it's truly an amazing place!
 
So my husband has pledged to shave his head and try to raise $5000 for the American Cancer Society and the Hope Lodge. We're half way there (yay), but we're hoping to hit our goal by the end of the month. If you're interested in donating and helping us hit our goal, here's his fundraising page:  http://main.acsevents.org/site/TR?px=26265331&pg=personal&fr_id=41542
 
Every little bit helps, so if you could pass this along to your friends & families who may be interested in helping, we'd greatly appreciate it!
 
Also, in addition to the Shave to Save event, the American Cancer Society holds a Wine Tasting and Auction. The event is being held on April 12th. Here's the website: http://main.acsevents.org/site/TR/CommunityFundraisingPages/CFPFY10HighPlains?sid=155525&type=fr_informational&pg=informational&fr_id=41542
 
If you're from the Kansas City area and interested in going, you can purchase tickets online (via the website above), and your purchase will be credited toward Jason's fundraising goal by selecting his name (Jason Stone) from the drop down menu during the payment process. A general admission ticket is $40 and includes food, beer and wine, and a commemorative party favor. I've never been to the event before, but from what I understand, it's a good time.
 
 
Just wanted to pass this along to you guys. Let me know if you have any questions, and if you do happen to donate and feel comfortable enough sending me your address, I'd love to send you a personal 'thank you'. Here's my email: stone7305@yahoo.com
 
Cheers,
 
~SarahS
Stage 3, NED 5 years!
Never say never...

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BillMFl's picture
Replies 7
Last reply 4/3/2012 - 4:02pm
Replies by: jag, BillMFl, Rocco

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jag's picture
Replies 1
Last reply 3/27/2012 - 1:48pm
Replies by: BillMFl

Good Guy or Big Phoney?

Insert Generic Inspirational Motto Here

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bikerwife's picture
Replies 1
Last reply 3/14/2012 - 12:49pm
Replies by: Julie in SoCal

My name is Belva and my husband Lynn is battling melenoma. I joined this forum to make new friends and find out new information.  Sometimes it is easy talking to someone who is going through the same thing you are.

We have had WBRT (through some crazy doctor who knows nothing about melenoma).  We are currently being seen at MUSC in Charleston South Carolina and seing a melanoma specialist that is very update on all clinical trials and is actively searching for new advances. Dr. Shirai and his staff are very gentle and understand. Such as differences in the prior dr we had.

We have also had Gamma Knife surgery to 5 very small brain lesions. This was done on Feb 20th of this year. Gamma Knife was a breeze no problems.  We are currently going through the ippi treatments.  First 2 was very easy no side effects although after the after second treatment we noticed some new growths on skin.  Showed this to the doctor on our third treatment day and he wasnt concerned he said with ippi that happens sometimes.  Jimmy asked about blood.  I asked this question each time and they say blood work is doing wonderful.  We had third ipi treatment on March 13 and with this one he has had a little nasuea and some fatigue.  I feel like i am sitting on a time bomb and feel so scared and alone.

Anybody with any comforting words or thoughts it would be greatlly appreciated. Again thanks for letting me post and May God bless each of you on your journey with this terrible disease.  Remember by his stripes we are healed.  

What God leads u to he will. Lead you through

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KyCyn's picture
Replies 6
Last reply 4/28/2012 - 8:55am
Replies by: BonnieLea, Nad T, KyCyn, Janner

Hi, folks!  Hope everyone is still doing well.  Still think of (and miss) a lot of people from here ...

Anyone know any updates on Bonnie Lea?  I noticed she hasn't been on facebook since late Feb, and she had been pretty good about updating with news.  

Enjoy your Sunday!!

 

Cyn

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yoop's picture
Replies 18
Last reply 3/27/2012 - 9:02am

Flying Bugs

 

by SirWilho

 

            "Tara dumped me," I say to brother Bishop.  "She dumped you???," replied Bishop, "yep," says me.  "Ha, ha, ha, ha, ha," Bishop taunts. 

            I believe it was the summer of 1982 when this all came about, 30 years ago and it's still burned in my brain.  Woe was me to endure the pain, humiliation and disgrace of being tossed aside like a banana peel.  

            Tara was actually brother Bishop's girlfriend, but he dumped her in exchange for someone new.  All the girls loved Bishops feathered hair, quirky smile and quick wit.  The chest hair showing from a shirt unbuttoned down to his navel really had them all twitterpated and they flocked to him like a seagull to McDonalds.

            The reality of my demise with Tara was that she exploited me by trying to make Bishop jealous and 'going out' with his brother.  Her plan didn't work so she dropped me like a hot rock.  The only one that got screwed in this whole interaction was me, and so began the first callous on my virgin heart.

            This wasn't the first time Bishop's antics caused me grief.  The previous winter a new girl moved to the lake. Rosie was her name, and she was intriguing.  My mom called her Pineapple because Rosie claimed to be Polish and Hawaiian.  We thought it fascinating to be around a girl of her mix.  Her hair was black as coal and afflicted with Menkes Syndrome, which means it was very kinky.  Big pouty lips and a complexion very similar to that of an African American with a voice that spoke with perfect Ebonic style.  We had never seen a Polish Hawaiian American before so she received a lot of attention from us boys.  Bishop's curiosity was piqued by her and it wasn't long before they could be seen walking hand in hand along the lake. 

            I have mentioned before that Bishop loved to work on cars or trucks and this hobby always gave him greasy, dirty hands.  One day, neighbor Stevie and I were spying on them and we were sure they looked to be in the throes of a deep make out session.  We ran up to them hollering, "Kotcha!!!" and "Busted!!!" Bishop nonchalantly says that they weren't doing 'nuttin', and to shut up or he would pound us, so we closed our yaps. 

            Bishop was still in denial over his involvement with Pineapple so she started to walk away.  The girl looked good that day, her hair all kinky and bushy, the pouty lips, and was wearing a cool pair of snow white pants.  We, of course, were checking her out as she turned to walk home and then Stevie and I started laughing.  Those white pants told no lies and perfectly placed across one butt cheek was the mark of a greasy handprint.  Bishop was busted. 

            This was a long story just to tell you that Bishop dumped her too and she also tried to make him jealous with me.  It didn't work for her either but I wasn't hurt when we 'broke up' since my involvement with her was strictly for the purpose of getting my hand print on the other cheek where Bishop laid claim.  Little FYI for ya... no, it never happened.

            I had to digress for a moment with the Pineapple girl story but now will revert back to the heart breaking Tara experience. 

            I'm dumped and sad, Bishop is upbeat and happy, brother Gump is looking for something to do and neighbor Richie has the ride. 

            A plan is hatched and went something like this; We all pile into Richie's VW Bug and explore uncharted roads through the deep woods of Wisconsin.  It was a simple plan since the Wisconsin border was only 3 miles away and our destination was Sach's bar, a mere 7 miles after the border.  Now, 10 miles isn't far on a highway but our route used side roads, snowmobile trails and maybe even a couple deer trails. 

            For the record, I wasn't really into the adventure due to my morose mood but the thought of a Whiskey Seven sure seemed to liven my spirits. 

            We cruised down the dirt roads with reckless abandon. Aldo Nova, Scorpions and AC/DC pounded out of our downed windows as we sang "I've got Big Balls, You've Got Big Balls, We've Got The Biggest Balls Of Them All". 

            Tires chattered as we rounded corners laced with washboard gravel and big plumes of dust rolled behind us in our quest for drink.  The ride took about an hour, in daylight, and we congratulated ourselves on good navigation and driving skills.

            It was now dark and time to drown my sorrows.  There was just one little problem... I was 14.  In 1982, a person had to be 18 years old to drink in Wisconsin.

            Brother Gump was 18 so he gave me his old license that had the corner clipped off and said I should be, 'good to go'.  Bishop unbuttoned his shirt some more so he was fine and Richie would have to sneak a drink or two.

            We walked in like we owned the place and then huddled in the corner.  All eyes seemed to follow me since I looked so young and my baby face wasn't even afflicted with the tell-tale signs of puberty.

            Our group pounded about 3 drinks each and soon ran out of money.  The adventure was deemed a success so we went about our way back home. 

            I ponder about why we didn't just take the main road home instead of our adventure trail but it seemed like a no-brainer at the time and off we zoomed in Richies Bug.

            Pretty much the same story as we drove back, music blaring, chattering tires, singing, etc.  The only thing different was the darkness, real dark, dark like Rosie's hair dark. 

            Zoom, zoom, zoom all over the trails we went, so much so in fact, I was sure we passed the same sign three times.  The fourth time we approached the sign I called it.... "We're lost."  "Hmmmm," we all sighed in unison.

            Gump really doesn't have a care in the world over this problem and starts chanting on the top of his lungs for the trees to hear, "Wedafugowwee, Wedafugowwe, Wedafugoweee," then laughs and says we are a new tribe of Indians.  Yeah.... hilarious.

            Bishop takes the navigational lead and is giving Richie step by step Mapquest instructions.  "Right here, left there, straight on this one...Whoaaa on this corner," until he is positive that we are on the right road.  He instructs Richie to 'give er' so Richie puts it to the boards. 

            All I heard was, "Yep, this is the road for sure," then, "GHAAA, WHOAAA," from Bishop.  I instantly popped up to see what they were seeing.  Grass.  Yes, grass.  Richie nails the brakes but they are ineffective due to the dew.  "CRASH MODE," Gump hollers. 

            Bishop was right, we were on the right road, but 25 years late since they took the bridge out since then.  With no bridge, we sailed about 20' out and over 10' down into the swift waters of the Brule River.

            The down stream door was opened since the raging waters kept Richie from opening the driver side.  Trepidation is a good word to describe the fear we had as we crossed the river hand in hand, like a band of brothers. 

            Safely on the other side we took a five and went into a deep moment to philosophize our state of being.  The divine hand of God reached out to us that night was our conclusion.  Our group must be special, Ghandi-like perhaps and were all destined for Greatness.  Hmmmm... I now say to myself.

            This story should be over now.. right???  I mean, there is romance, dejection, drama, excitement and resolve.. dun... end of story... nope..

            We didn't know where we were so we walked in wet shoes until a darkened landmark was seen.  "Billy Neslo lives about a mile away," I say.  "He will surely give us a ride home." 

            Billy Neslo once wrapped a chain around his neighbors neck for chasing their family dog.  "Yeah, he's a good guy," I say.

            Pound, Pound, Pound on his door and the dog comes a runnin'.  "For the love of God don't chase it," I say.

            Billy comes to the door all sleepy and wondering what the commotion is about.  He let us in and we rehashed the story.  Don't you think he should be have looked at us like we possess Divine powers?  After all, we sailed into the Brule River with nary a scratch.  Instead, he slowly spreads butter and then peanut butter on Saltine crackers and quietly eats them, yawning as he munches. 

            Billy then drove us home in his old Chevy truck,  5 of us crammed into the front seat as we rode in silence.

            Pappy wakes up from his slumber to see us try to slink in and we kinda tell him the story.  The story with him went something like this:  Richie conned us into taking a ride with him. We somehow ended up in Wisconsin. We stopped to discuss the star formations of Orion and the Big Dipper when dumb Richie didn't engage the parking brake on his car and it rolled into the Brule River. He coulda killed us but we were lucky we chant, all the while poor Richie is thrown under the bus. Pappy goes back to bed with nary an upturn in heartbeat or blood pressure.  Phew, lucky again, we did possess Divine Powers.

            It's the next morning and we are up early.  Pappy clearly forgot our story but my Mom is grilling us when uncle Broom pulls into the driveway for a visit.  My brothers and I are now very happy with his distraction. 

            Uncle Broom is a great character, he looks like Kenny Rogers, and once, while in the process of a divorce, I heard him sing 'Ya picked a fine time to leave me Lucille,'  over and over at the Shamrock Bar.

            Uncle Broom starts telling us this crazy story about what he saw that morning.  He was making the rounds of visiting and stopped on the bridge over the Brule River.  (4 miles downstream from where we flew in)  "I'll be damned," he said, "Never seen anything like it."  "What? What?" we asked.  "I'm standing on the bridge and coming from the bend in the river I see a yellow Volkswagen Bug just bumping down the river heading for Florence, Wisconsin."

            My brothers and I freak out (secretly) and plan how we will intercept the bug.  About the time we were ready to leave Uncle Broom tells us he was just joking and that he talked with Billy Neslo before coming to our house. 

            He leaks the real story to my parents and we were in trouble... again. 

            Since the Bug is still in the river, Brother Gump goes with Richie and the tow truck driver to lift it out.  Gump is a great 'lil' helper and as he was helping the tow truck guy winch the car up, he lost his grip of the handle on the winch.  The handle came spinning back at him where it caught him square on the jaw requiring six stitches.  Evidently Divine Powers were only given to Bishop and I.

            Richie finally gets his VW Bug to his house and starts looking it over.  I watched as he opened the passenger door to let the water out.  A little fishing bobber flowed with that water to the ground and I asked Richie if I could have it.  He seemed crabby at my request so I let it go.  No... I didn't make this part up.... Close to six quarts of water/oil came from the engine but Richie did get it running again and used that car for several more years.

            On this note I will end my story of romance, dejection, drama, excitement and resolve.  And Tara?  I haven't a clue, and I bet she would never think she would be the stimulus of a story...

              

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BillMFl's picture
Replies 14
Last reply 3/27/2012 - 1:29pm
Replies by: BillMFl, Anonymous, keyon, Nad T, BonnieLea, Janner, DonW

Hi Bill, how are you? Just fine Bill, whats up? Oh nothing much, just stopped by to chat with old friends. Ya? How many old friends do you have? Only one for sure, you Bill. Well lets stick together buddy. You got it pal. Cya laterBill. By Bill.

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thiger78's picture
Replies 3
Last reply 3/8/2012 - 9:07am

i am interested in talking with anyone that has had a diagnosis of Primary Dermal Melanoma.  i have been told it is very rare and has a better prognosis than most other melanomas.  In my case, I went to a surgeon to have a left chest wall "Inclusion Cyst" removed.  To my surgeon's suprise the pathology came back Melanoma.  My surgeon imediately referred me to another surgeon to have another surgury to establish "clean margins"  and perform a sentinel node biopsy.  This should happen within the next two week.  I also have been seeing another oncologist for the past 3 years for Chronic Lymphocytic Leukemia, which has been stable for the past two years (last treatment was Nov 2009). He immediately ordered a PET/CT which was negative for any further disease. now I am just keeping my fingers crossed that my sentinel node comes back negative as well.

This too shall pass

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thiger78's picture
Replies 1
Last reply 3/8/2012 - 5:28am
Replies by: keyon

i am interested in talking with anyone that has had a diagnosis of Primary Dermal Melanoma.  i have been told it is very rare and has a better prognosis than most other melanomas.  In my case, I went to a surgeon to have a left chest wall "Inclusion Cyst" removed.  To my surgeon's suprise the pathology came back Melanoma.  My surgeon imediately referred me to another surgeon to have another surgury to establish "clean margins"  and perform a sentinel node biopsy.  This should happen within the next two week.  I also have been seeing another oncologist for the past 3 years for Chronic Lymphocytic Leukemia, which has been stable for the past two years (last treatment was Nov 2009). He immediately ordered a PET/CT which was negative for any further disease. now I am just keeping my fingers crossed that my sentinel node comes back negative as well.

This too shall pass

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jag's picture
Replies 1
Last reply 3/8/2012 - 5:27am
Replies by: keyon
Insert Generic Inspirational Motto Here

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MarieM's picture
Replies 5
Last reply 3/8/2012 - 5:26am

I know she's been just too sluty over the years...but I LOVED the half time performance....she IS so talented...and the songs brought back such good memories. I LOVED it....

GO GIANTS!!!!

Hope you are all having fun...

Marie

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Shelby - MRF's picture
Replies 1
Last reply 3/8/2012 - 5:25am
Replies by: keyon

Next week, Melanoma.org will be undergoing maintenance to improve site functionality. To make the process smoother, we want to alert you that the forums will be unavailable between the hours of 2 and 5 a.m. (EST) on Tuesday, February 7, and that any posts made between 5 a.m. and noon that day may not be captured in the transition. Thanks for your understanding! 

Shelby - MRF

 

Why are the boards down?

The boards are suspended so no changes are made to the site during the update - this helps the update process happen much faster.

Will I be able to post again after the boards come up in the morning?

Ideally, we'd like you to wait to post for a few hours after the boards go live, say, waiting until 8 or 9am EST.  That said, you should be able to post again as soon as the boards are live again at 5 am EST.  However, please be advised that if you do post that early, your post may not be captured fully.

The boards look exactly the same as they did before. What really changed?

You’re right -  the boards are the same. What changed is how responsive the site will be. We upgraded our server so that the site will be faster and there will be fewer hang-ups when you click on links, especially on the weekends when traffic is high. 

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BillMFl's picture
Replies 3
Last reply 3/8/2012 - 5:24am
Replies by: keyon, BillMFl, jag

What a disgusting week of Newtoninan barfology. I especially enjoyed his hysterical pandering to the West Coast NASA folks with the I'm gonna establish a Moon Colony speach.  LOST IN SPACE NEWT!!!!  Warning. Warning. Warning Will Robinson. I sense an alien presence in Newt's brain. So here is this guy with who got caught with his hand in the cookie jar, was fired as speaker by his own party, fined, publicly disgraced, divorced his first wife as she was battling cancer (the Dems had Edwards too I admit) divorced his second wife who was recently dx'd with MS because she wouldn't let poor Newtie be naughty and have an open marriage. Then he rakes in millions as a non lobbyist doing lobbying for the scandalous mortagage company that exacerbated the housing collapse, and then has the balls to think he is a serious CONSERVATIVE presidential candidate.  At least Cain quietly rode off to obscurity when his past behavior became public knowledge.  My bible thumping red neck relatives and neighbors all came home yesterday gleefully gloating how they had cast their votes for Newt. He even had spoken at their Baptist Church (Idlewild, a mega church) here on Sunday. What part of his behavior is consistent with their bible thumping beliefs???  How can Newt be considered a conservative? What I see happening is the Republican party self destructing. Their best potential candidates won't run partly due to the Tea Party crazies that have forced moderate Republicans who would have a serious shot at winning to avoid seeking the job. The Republican party has a long history, remember Goldwater, of letting the extremist undermine their credibility. I personally think Romney could be a competent moderate conservative president. But he has been forced to shift much farther to the right to even have a chance for his party's nomination. When people like Romney and Huntsman are rejected as too liberal I think The Republican Party is being dragged down by the die hard angry white red necks of the South and the rural sparsely  populated predominately white Western states. The US is now much too multi racial, multi ethnic for the far right to prevail. If the economy continues to improve, Obama should have pretty good odds of being re-elected.

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dian in spokane's picture
Replies 4
Last reply 3/8/2012 - 5:22am
Replies by: keyon, MarieM, lhaley, djpayn

Are you out there Dude? They say it's your birthday. If that's true, I hope you had a happy one. Every birthday is amazing for me, and I bet that's more so for you.

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