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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Colleen66's picture
Replies 1
Last reply 3/12/2013 - 2:44pm
Replies by: susanr

My head is spinning, anxiety is over the top, depression kicking in.  Spring cleaning all days to give my mind a rest.  Could really use the chat room.

Colleen 

Live!

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Hello fellow warriors!

I am a stage 3 melanoma survivor doing several small fundraisers for MRF throughout the year. I'm looking for women whose lives have been touched by melanoma (either directly or indirectly) who could help me with my fundraisers. The time committment is very minimal and it does not matter where you live.  Please send me an email for more into at welgetracy@gmail.com and put MRF Fundraising in the subject line.

Thanks for your help!!

Tracy Welge

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BonnieLea's picture
Replies 0

I think I am maybe 9 yearrs NED? with a side route to LMM  and cant count the rest of the crap...cos it was not Mel.  so I am choosing NED for 9 years. only a few hiccups along the way.

Hang in There

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Oh Boy, you guys are all great.....  You never can know just how much you cheer me up.  I am only thinking of CAMPING in approx 125 days.  Grundy Lake here we come.

As I am looking out the window at that mountain of ploughed snow in the centre of the court....my mind strays to the loverly soft water of Northern Ontario. Our opening meal will not be Lobisters (I know I know I am deveating from the norm)  but we decided on RIBS  made here slathered in sauce frozen solid then transported up to be finished off on a BBQ

Of course Champagne will flow....well what little we can buy.  But ahhhhh the fear of critters, the either hot, or wet, or cold weather.  The bugs that eat my feet, and make me have to actually seek medical aid, and did I mention Bears?  oh me oh my.   But this month thus far I have three medical appts one today, one tomorrow, and one on the 28th.  Who knows what else.  Oh ya and Bob is doing fine since his horrific crap of last may.

He will take it easy, cos I am not ready for him to just pop off.  I try to keep his stress down, and I know you guys think that would be hard on me...ya it is hahha but Love does wonderful things.

Bill, Jerry, and Jag I love you guys.  I love you all and I am trying to sort out my crowded mind to get back to where I want to be.  SHUNTS also suck.  But not as bad as Cancers.

We need fun guys and guyetts.  Lets just DO EEET!

 

Love Bonnie Lea

Hang in There

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ruby's picture
Replies 2
Last reply 3/6/2013 - 12:37pm
Replies by: ruby, POW

Hi all

I would welcome anyones advice here please

I first had a 0.9mm melanoma remove from my skin in 2008 31/12/2012 I was diagnosed with a 3 mm local recurrent in the scar line this has been removed and I have been lucky enough to be told negative node after SLNB.

 

I have now bee told to take interferon for 4 weeks high dose and then 12 months delf administered... I have a 8 month old baby to look after a 13 year old daughter and am scared I will not cope whilsy on the course I also live in ireland away from all my family I am put off my the bad side effects but also dont want to regret not taking this chance to see off the monster  your thoughts advice anythink welcomed as this is the hardest of decisions..

 

rachel

x

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JerryfromFauq's picture
Replies 1
Last reply 3/3/2013 - 9:30pm
Replies by: Janner

There are two chat rooms!  Click the arrow in the top of the chat room space to the right of Melanoma Chat.  a drop down window gives one the options of :

Melanoma Chat

OFF TOPIC CHAT

 

It doesn't work as well as the old two chat room set up did.  If you jump from one chat room to the other your screen in the newly entered room is wipped clean.  Also the window no longer shows you who is in the other chat room like in the old days.  I have complained numerous times about the difference, but received no response from the MRF about it.

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

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JerryfromFauq's picture
Replies 4
Last reply 3/6/2013 - 8:23am
Replies by: BonnieLea, jag, BillMFl, POW
Military Pay
CINDY WILLIAMS was appointed by Obama as  an Assistant Director for NATIONAL SECURITY in the Congressional Budget O ffice.....

This is an Airman's response to Cindy Williams' editorial piece in the Washington Post about MILITARY PAY, it should be printed in all newspapers across America .

Cindy William wrote a piece for the Washington Times denouncing the pay raise(s) coming service members' way this year citing that she stated a 13% wage increase was more than they deserve.

A young airman from HillAFB responds to her article below. He ought to get a bonus for this.

"Ms Williams:

I just had the pleasure of reading your column, "Our GI's earn enough" and I am a bit confused. Frankly, I'm wondering where this vaunted overpayment is going, because as far as I can tell, it disappears every month between DFAS (The Defense Finance and Accounting Service) and my bank account. Checking my latest earnings  statement I see that I make $1,117.80 before taxes per month. After taxes, I take home $874.20. When I run that through the calculator, I come up with an annual salary of $13,413.60 before taxes, and $10,490.40 after.

I work in the Air Force Network Control Center where I am part of the team responsible for a 5,000 host computer network. I am involved with infrastructure segments, specifically with Cisco Systems equipment. A quick check under jobs for "Network Technicians" in the Washington , D.C. area reveals a position in my career field, requiring three years experience in my job. Amazingly, this job does NOT pay $13,413.60 a year. No, this job is being offered at $70,000 to $80,000 per annum............ I'm sure you can draw the obvious conclusions.

Given the tenor of your column, I would assume that you NEVER had the pleasure of serving your country in her armed forces.

Before you take it upon yourself to once more castigate  congressional and DOD leadership for attempting to get the families in the military's lowest pay brackets off of WIC and food stamps, I suggest that you join a group of deploying soldiers headed for AFGHANISTAN ; I leave the choice of service branch up to you. Whatever choice you make though, opt for the SIX month rotation: it will guarantee you the longest possible time away from your family and friends, thus giving you full "deployment experience."

As your group prepares to board the plane, make sure to note the spouses and children who are saying good-bye to their loved ones. Also take care to note that several families are still unsure of how they'll be able to make ends meet while the primary breadwinner is gone. Obviously they've been squandering the "vast" piles of cash the government has been giving them.

Try to deploy over a major holiday; Christmas and Thanksgiving are perennial favorites.. And when you're actually over there,  sitting in a foxhole, shivering against the cold desert night, and the flight sergeant tells you that there aren't enough people on shift to relieve you for chow, remember this: trade whatever MRE's (meal-ready-to-eat) you manage to get for the tuna noodle casserole or cheese tortellini, and add Tabasco to everything. This gives some flavor.

Talk to your loved ones as often as you are permitted; it won't be nearly long enough or often enough, but take what you can get and be thankful for it. You may have picked up on the fact that I disagree with most of the points you present in your open piece.

But, tomorrow from KABUL , I will defend to the death your right to say it.

You see, I am an American fighting man, a guarantor of your First Amendment right and every other right you cherish...On a daily basis, my brother and sister soldiers worldwide ensure that you and people like you can thumb your collective noses at us, all on a  salary that is nothing short of pitiful and under conditions that would make most people cringe. We hemorrhage our best and brightest into the private sector because we can't offer the stability and pay of civilian companies.

And you, Ms.. Williams, have the gall to say that we make more than we deserve?”
A1C Michael Bragg, Hill AFB AFNCC
IF YOU AGREE, PLEASE PASS THIS ALONG TO AS MANY PEOPLE AS POSSIBLE AND SHOW YOUR SUPPORT OF THE AMERICAN FIGHTING MEN AND WOMEN.
I'm me, not a statistic. Praying to not be one for years yet.

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POW's picture
Replies 5
Last reply 3/3/2013 - 11:02pm

 

Thanks to all of you so warmly sharing your advice and experiences, my "last visit" with my brother went extremely well-- much better than I expected. You really helped!

Most of you suggested that I let my brother set the tone and the pace of our discussions and that is what I wanted to do. Unfortunately, that's not quite possible with my brother because one of his brain mets is pressing against the languge center in his brain-- both speech and writing. So although he can understand everything you say, he can only respond with a "Yes" or "No" or sometimes a single word. So he can't initiate any discussions. However, I did gently bring up the 2 or 3 things I specifically wanted to talk about and by playing "20 Questions" he was able to communicate to me what he wanted to communicate. I was surprised that he didn't dive away from the emotional or spiritual discussions and he was unusually patient with the "20 Questions" approach (usually he throws up his hands in frustration after 30 seconds, but this time he stuck with it), so I think he really did want to make his wishes known about these topics. I am probably the only one in the world who would be able to have even this limited degree of communication with him, so I am very glad that I took this time to visit and converse.

But overall, the visit was not heavy or emotional. Most of the time we just hung out while we watched TV or I chattered on about family gossip or current events. One day I took him to visit some of his best friends and we sat around drinking beer and talking about sailing. My brother got a little drunk (don't worry, alcohol won't hurt him) and I played a CD of his favorite Irish band in the car on the ride back to the nursing home and he was having a ball. Another day I sent away his dinner tray and went out and got a pizza and we sat in his room eating pizza and watching eposides of his favorite old TV program on a DVD I brought him. 

Casagrayson recommended the book "Final Gifts". I highly recommend this book to everyone.Since I don't have a Kindle, I was not able to download and read the book instantly. However, I did read several excerpts of the book on the Internet and a couple of interviews with the author so I got the general idea of what the book was suggesting.  One of the things I did because of this reading was to tell my brother that it was OK for him to let go.

I told him how much I appreciated his amazing fight to "beat the beast" for so many months. The extra 6 months he got allowed the family to come to terms emotionally with the diagnosis. It also allowed him to work with us to settle his affairs and now everything is taken care of which, as his executor, is a load off my mind. I thanked him again for giving us the opportunity to make as smooth a transition as possible. And I told him that he should know that we are all going to be OK in the future and he should allow himself let go when his time comes. He seemed somewhat relieved on hearing that.

I don't know if this will really be my "last visit" or not. Nobody knows, of course, when the end will come and it may just happen that I do get to see him again. But I feel very good about taking this time to have a warm, relaxed visit focused just on him and to address some of the deep topics that we wouldn't ordinarily address.  There are no loose ends or regrets about things left unsaid. Thank you all again for supporting me through this.    

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After a ton of treatments I learned that the first thing you have to be able to do to get out of the hospital is just to get out of bed.  In between treatments I kept myself as active as possible to get up the next time.  After a while I guess, melanoma either felt sorry for me or gave up.  I can't tell which.  This guy has the best treatment philosophy out there.  Rather than worrying about the right things to eat all day, just stay active and don't eat as much.

http://www2.mdanderson.org/cancerwise/2013/02/how-staying-active-and-t-c...

Insert Generic Inspirational Motto Here

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fdess056's picture
Replies 3
Last reply 4/29/2013 - 10:57pm
Replies by: kylez, fdess056, pipes

Hi all.  I completed Yervoy last spring and have been on Zelboraf for 7 months.  I was just refused entry into a PD-1 trial at Sloane due to brain mets which Bristol Myers Squibb claims are active.  My docs and radiation consultants disagree but I guess the drug companies get to make that decision. other mets in my stomach and knee seem to be showing some indication that my body may be building up a resistance to the Zel.

Anyway, my onc now wants to continue with the zelboraf, re-introduce yervoy along with it and also add some radiation.  Anyone have any experience with this?  I've tried to do some research but couldn't come up with much.  Any help would be greatly appreciated.

Thanks

FrankD-Brooklyn

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NYKaren's picture
Replies 6
Last reply 3/2/2013 - 10:24pm

Dear Friends,
Why do a few people continually post "anonymously"? I'm not talking about a newbie, or a sensitive subject. It's not like we don't know who they are. I could say that when more than 1 anonymous posts on the same thread it gets confusing, but really, that only happened once, so who would I be kidding? Why can't "Anonymous" simply pick a name, like Matilda, or Pricilla?
A) does this bother anyone else? and
B) Janner, you have the patience of a saint.
Best to all,
karen

Don't Stop Believing

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BillMFl's picture
Replies 4
Last reply 3/2/2013 - 10:29pm

Written by Jake Tapper, an ABC News journalist imbedded with troops in Afganistan, it is a gripping account of a failed , dubious and callous strategy of locating small groups of American soldiers in extremely remote and isolated bases called FOB's or Foreward Operating Bases located deep in the mountains on the borders of Afganistan/Pakistan. These bases could only be supported by helicopter and the troops were exposed to daily fire from surrounding peaks. Rockets, mortors and machine gun fire were almost a daily event.  You may have seen a young Sgt named Clinton Romesha receive the Congressional Medal of Honor a few days ago. He rallied the remaining survivors in a last ditch counter attack as the base was being over run. Its a gripping story of an indifferent high command needlessly exposing brave young men in an impossible location.

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POW's picture
Replies 7
Last reply 2/26/2013 - 9:02am

My brother's melanoma has spread all over his body, including his brain. There are no more treatments his doctors can offer him. He is now in a nursing home in Tampa and I am going to visit him for a couple of days (I live in Atlanta). His nurses say that he is very weak and needs assistance to walk, but he is not in pain and he is mentally alert and well-oriented. 

This will probably be my last visit with him-- at least my last visit while he is still able to recognize people and communicate. If you were the patient, how would you like this visit to go? I assume that he will tire easily so I will probably visit for an hour or two in the morning, leave him to rest and sleep for a while, and then come back later in the day for another hour or two. If he's up to it, perhaps I can borrow a wheelchair and take him to visit his beloved sailboat. Or go out to lunch. Most of the time I intend to just hang out with him, maybe watch some television or fix his laptop (he can't get the wifi to work) or remenisce about our old sailing adventures or the hard-nosed nuns at our parochial school. Or just sit quietly and read a book while he dozes. 

I guess my concern is whether I should bring up any discussion about the end of life. My brother is a very self-contained man and seldom talks about his feelings about anything. He has never said anything about his emotional reaction to his impending death. (Other than to say, "What will be, will be.") I know he believes in God and an afterlife, but he is not a church-goer. Should I ask him if he wants to talk to a priest? Or a hospice counselor? Or should I just leave him be?

Any advice or insight would be appreciated. 

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BarbieGirl's picture
Replies 1
Last reply 3/2/2013 - 10:11pm
Replies by: JerryfromFauq

Allen Carr called to let me know some of the oldtimers were doing chat this week (and last week).  I can't get in---I just get a black screen.   Any help?

You're all prolly gone tonite since it's after 10pm EST.   Wish we could still see who was in the chat room. *sigh* 

Anyhoo, howdy, hope you all haven't missed me too much.  I know some of you haven't missed me at all!  =) 

Still raising girlies and taking care of MamaG.  She fell the 1st week in January and broke her clavicle (collarbone) on the right side.  She did a hard, fast rehab (10 days or so).  Got her home from that, and 2 days later, she was back in the hospital w/ pneumonia.  She went to a skilled nursing rehab after that, and within FOUR HOURS of being there, fell off the flippin' bed and broke her left hip!  She had surgery 2 weeks ago, and is back in skilled nursing rehab.  She's had a rough start this year.   

I'm over 12 years NED now (yippeee).  Still have a crappy back, which is getting crappier every day.  I live with it. 

If I can ever get into chat, I hope to reconnect with my old-timer buddies!  We need another bash!  Told Allen we need to take a cruise, but I've been rethinking that after the "cruise from hell" recently. 

Ya'll can find me on facebook (Lisa Garman Norvell). 

Take care!  *Hugz*

~L~

ps.. JAG---didn't know you had a baby boy now.   Congrats!   Mr. Bill---send Allen Carr your email addy, k?  He asked me if I had it.... hah! (Never did!)Bonnie, I think of you all the time.  I owe tons of people emails and can't say when (or even IF) I'll get around to answering them.  Life is busy busy busy these days, and when it's not, I'm playing auto-bingo while trying to catch up on shows on my DVR!  

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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BarbieGirl's picture
Replies 1
Last reply 4/17/2013 - 1:36am
Replies by: CindyMillan

Allen Carr called to let me know some of the oldtimers were doing chat this week (and last week).  I can't get in---I just get a black screen.   Any help?

You're all prolly gone tonite since it's after 10pm EST.   Wish we could still see who was in the chat room. *sigh* 

Anyhoo, howdy, hope you all haven't missed me too much.  I know some of you haven't missed me at all!  =) 

Still raising girlies and taking care of MamaG.  She fell the 1st week in January and broke her clavicle (collarbone) on the right side.  She did a hard, fast rehab (10 days or so).  Got her home from that, and 2 days later, she was back in the hospital w/ pneumonia.  She went to a skilled nursing rehab after that, and within FOUR HOURS of being there, fell off the flippin' bed and broke her left hip!  She had surgery 2 weeks ago, and is back in skilled nursing rehab.  She's had a rough start this year.   

I'm over 12 years NED now (yippeee).  Still have a crappy back, which is getting crappier every day.  I live with it. 

If I can ever get into chat, I hope to reconnect with my old-timer buddies!  We need another bash!  Told Allen we need to take a cruise, but I've been rethinking that after the "cruise from hell" recently. 

Ya'll can find me on facebook (Lisa Garman Norvell). 

Take care!  *Hugz*

~L~

ps.. JAG---didn't know you had a baby boy now.   Congrats!   Mr. Bill---send Allen Carr your email addy, k?  He asked me if I had it.... hah! (Never did!)Bonnie, I think of you all the time.  I owe tons of people emails and can't say when (or even IF) I'll get around to answering them.  Life is busy busy busy these days, and when it's not, I'm playing auto-bingo while trying to catch up on shows on my DVR!  

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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