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.

Expand/ Collapse Topic
 
Replies By
View Topic
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!!!!

Login or register to post replies.

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.

Login or register to post replies.

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?   

Login or register to post replies.

BonnieLea's picture
Replies 1
Last reply 5/19/2013 - 10:20pm
Replies by: jag

Dear One and all.

 

The other day I went back to PMH (princess Margaret Hospital) to review a mass of recent tests.  The results are:  TA DA  my tests were all BORING! yes that was the key word.

I am now officially discharged from PMH after 9 years of six month appts.  I am being transferred to another hospital for a new trial clinic for long term followup for melanoma patients not undergoing treatments.   in other words I think it translates to NED after all these years. 

Of  course I still have on going issues with my "earlid" as the black stuff keeps on comiing back, then they biopsy it, and it goes on.  I still have six months checks for the RCC that was removed and will always be watched for any signs of BC coming back.

  BUT those are all at different hospitals.

 

Those of you on FB know this but the rest  of you??

Love Bonnie

 

P.S.  JOHN pls write you owe me hahaha.  Barbie Girl you need to answer my questions regarding your new spot on cheek.  You were soooo worried and now I hear nothing....what happened?

Janner, I love you

Love Bonnie

Hang in There

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 5/17/2013 - 11:49am
Replies by: Shelby - MRF

doesn't anyone look at this board?

Login or register to post replies.

POW's picture
Replies 2
Last reply 5/9/2013 - 3:07pm
Replies by: BillMFl, Colleen66

As you may or may not know, my brother passed away 2 months ago after a brief, intense battle with melanoma. I have posted here before about my anxiety, depression, and grief. The people on this site have been extraordinarily kind and understanding-- a big ((HUG)) to all of you! I know that my personal journey isn't over-- the void in my life and the hole in my heart will last forever. But I can look back now and see some ways in which I have grown and matured in the last year. I have come to understand some things I didn't understand before. For example...

 

I looked around my home office the other day and realized that it looks like somebody exploded a bomb in it. Then I looked around at the rest of the house and realized that all the other rooms were almost as bad. "Oh my!" I thought, "How could I let things get this way?!!" Then, like a flashbulb going off, I suddenly realized that I am finally coming out of my stress/grief fog. My house didn't suddenly get messy-- it has been building up for months. But I have been so stressed and so grief-stricken that I either didn't notice or didn't care. Why bother noticing something that I don't have the energy or the desire to fix?
 
Over the last 2 weeks I have found myself getting back to normal. I'm taking fewer naps. Doing less gardening and more income-producing freelancing. I'm getting dressed in the morning and actually looking FORWARD to getting to work! I'm scrubbing toilets and washing floors rather than listening to talking books and playing computer games all day. 
 
It's very disconcerting to realize now in hindsight how very bad off I was emotionally. Or maybe I wasn't really "bad off". Maybe I just had to rearrange my priorities for the last 10 months and now my priorities are getting back to normal. At any rate, I am feeling much better and feeling good about getting some important things done. I think I'm going to be OK on my own for now. 
 
And here, all my faithful companions and supporters, have one more big ((HUG)) from me!! As fellow melanoma sufferer Peter "The Ogler" Ogle said, "Living is hard, but life is good. We are all blessed to be a part of God’s great creation."

Login or register to post replies.

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

Login or register to post replies.

 

Benefits of Planetofbets:
 
- Can place bets during Live match
- Can place bets in 85 minutes
- Can place bets on total goals to be scored
- Can place bets on Double Chance, i.e One team will either win or draw
- Can place bets whether goals will exceed one
- Can place bets whether goals will not be upto one
- Can place bets on which team will win
- Can place bets whether both team will play draw
- Can place bets on different Sports like: Soccer, Volleyball, Tennis, Handball, Basketball, Ice hockey, Baseball, Rugby, Mixed Martial arts, Snooker and more.
- Can place bet on Result at half-time
- Can place on Handicap
- Can place bets on Odd or even total goals
- Can place bets whether both teams will score in the match
- Can place bets on Exact score
- Can place bets on First half correct score
- Can place bets on How many goals will be scored in the 1st half.
- Can place bets on How many goals will be scored in the 2nd half.
- Can place bets on Double chance - First half, i.e One team will win or draw in First Half.
- Can place bets on First half handicap.
- Can place bets on First half asian handicap.
- Can place bets whether total goals scored in the first half will be odd or even?
- Can place bets on Win to nil.
- Can place bets on Double chance - Second half, i.e One team will win or draw in Second Half.
- Can place bets on Asian handicap
- Can place bets whether total goals scored in the second half will be odd or even.
- Can place bets on Second half correct score
- Can place bets on Which team will score the next goal?
- Can place bets on How many goals will be scored at range half time - 60 minutes?
- Can place bets on How many goals will be scored at range 61 - 75 minutes?
- Can place bets on How many goals will be scored at range 76 minutes - full time?
 
Means of Deposit and Withdrawal:
- Liberty Reserve
- Perfect Money
- Visa
- WebMoney
- Liqpays.com
- Qiwi
- SMSMatex
 
 
Can send me an Email for more assistance.

Login or register to post replies.

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!!

Login or register to post replies.

POW's picture
Replies 7
Last reply 4/13/2013 - 10:13pm
Replies by: NYKaren, jag, JuleFL, BillMFl, POW, Anonymous

My brother was diagnosed with Stage IV melanoma last June and passed away from the disease 3 weeks ago. Even though we live in different states, during his illness I broke my neck and did everything I possibly could to get him the best possible care and to ensure that his quality of life was as good as it could be all the way up to the very end. It was, of course, a very stressful time for everyone in the family. I knew that I was stressed and grieving (and I did take care of myself as best I could) but it wasn't until after he had passed and I had done all the necessary paperwork that my stress and grief REALLY hit me. I guess I'm one of those people who is able to push my emotions into a corner of my mind and get on with what needs to get done. I suppose that is a characteristic of all of us caregivers.

From time to time over the last 9 months I have seen a very good grief counselor. She is very experienced in hospice work and she seems to "get" me and how I operate mentally and emotionally. I saw her the other day for the first time since my brother died. I told her that I was doing OK. Yes, I get overwhelmed with sadness sometimes and start to cry some. But it passes quickly and I get back to doing a lot of things that I have let slide over the months (house cleaning, grocery shopping, freelance work, etc.).

By the end of the session she said that she did not think that I was "doing OK".  She said that 3 times during our session I had gotten all choked up and fought back tears. People who are "doing OK" don't behave that way. I replied that I thought that type of behavior was to be expected when one was grieving. I figured that it would take time for the intensity of the feelings to subside. One just had to be patient and get through it. She said, "No". She said that the only way to really get through grief was to talk about it and cry about it for as often and as long as necessary. Rehash the same upsetting memory again and again if necessary until the grief is gone. It doesn't have to be with her; I could relive the memories and express my grief with my spouse or my family or with my close friends. But her advice was to do so in order to experience emotional healing. 

That approach is foreign to me. In my family, we keep our mouths shut about distressing emotions. If you start feeling badly, distract yourself, change the topic of conversation, push the emotions away. Letting it out, rehashing and reliving the stressful past and anticipating the unhappy future, or crying openly in front of other people is shameful and just makes you feel worse. No good can come of it.  

So now I don't know if I should trust this therapist and continue seeing her for periodic "crying sessions" or whether I should do what I have been taught to do by my upbringing and experience-- stiff upper lip the whole thing. Since this is my first experience with losing someone close to me, I can't imagine how to do things differently from the way that comes naturally to me. I can't imagine how emoting all over the place will help me. But maybe I'm just suffering from a lack of imagination here. Maybe I should try it the therapist's way.

This is where I could use your input. In your experience with grieving (either now or in the past), have you allowed yourself to frequently talk about and cry about your loved one and how sad you are that they had to endure the misery of their disease and how much you now miss them now? Do you think that's a healthier approach than just pushing your grief into a corner and getting on with life? Is the emotional end result-- say 6 months or a year later-- any different with the two approaches?

I would appreciate hearing about your experience and insight.  

Login or register to post replies.

Kim K's picture
Replies 3
Last reply 4/8/2013 - 9:37pm
Replies by: Janner, Kim K, King

I check the board multiple times a day to hear - anything.  Please let me know how my friend is doing now.  Last I read she was asking for her banjo.  I pray for her every night, and I don't pray much.  Please let her continue to heal......  I also hope the IL-2 she did tolerate is kicking mel's butt royally.......

 

KK

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

Login or register to post replies.

MarieM's picture
Replies 5
Last reply 3/30/2013 - 9:10pm

is not doing well. Please see Don's post on the mainboard. I'm suddenly and rarely at a loss for words.

Marie

Login or register to post replies.

Dear Dian

 

Oh for the days of the darkside.  But...here we are....this is a time for regeneration and new growth...spring has sprung (at least here) sort of.... but My old fashioned prayers are spilling forth and you simply must pay heed.  Taint your time no way no how.  Who will light Cigar Bob's cigars?  who will be the guitar member of the DFS and who will learn the banjo, except for you?

 

Get well, Live long and you will prosper.

Love Bonnie Leaheart

Hang in There

Login or register to post replies.

POW's picture
Replies 4
Last reply 3/23/2013 - 7:10am
Replies by: POW, BillMFl, Colleen66, Cielo

Nine months after  his initial diagnosis (stage IV with brain mets at that time) my brother passed away peacefully under hospice care yesterday. 

I posted before about our "last visit" 3 weeks ago (see:http://www.melanoma.org/community/off-topic-forum/update-re-last-visit  ). Even though he couldn't talk at that time other than to say "yes" or "no", we had a very good visit, we had some fun, and we communicated what needed to be communicated. A week or 10 days ago, he could no longer say even "yes" and"no", he could not get out of bed without assistance, and he started to have trouble swallowing. He still claimed to have no pain (he could nod his head "yes" or "no") but his medical team decided it was time for hospice inpatient care. He was moved from the nursing home to the hospice house last Wednesday.

On Friday morning, I got a call from the hospice nurse that "it was time"-- hospice felt that my brother was near the end. So I threw my clothes in a suticase, jumped in the car, and drove 8 hours from Atlanta to Tampa. I arrived at hospice house at about 9 PM. My brother was semi-comatose, but resting peacefully, not in pain or struggling to breathe. No tubes, no beeping monitors, no glaring lights. Just apparently sleeping. I sat with him for quite a while. I talked to him and reminded him about some crazy St. Patrick's Day stunts he had pulled in the past. I put a cool washcloth on his brow, and cried a little. He woke up a couple of times and seemed to recognize me. At one point, he raised one hand and moved it toward me, which I interpreted as him wanting to give me a hug. So I sat on the edge of the bed an we had a long hug. When it was time for me to leave, I told him to go back to sleep and that I would be back in the morning.  At 8 the next morning, hospice called to tell us Mike had just passed.

It seems strange to say it, and I could never prove it, but I can't help but think that he was waiting for me to get there before he let go. I have been the closest person to him throughout his life (other than his dear, departed Margaret) and I can well imagine him using his incredible will to hang in there long enough for me to see for myself that he was not in distress and for us to both have a loving good-bye.

His gentle, fiercely independent life, his long valiant struggle, and his final passsing are over. I was able to arrange for his favorite priest to say Mass for my brother that same day, and our 91-year-old mother and I were able to attend. This evening, I am hosting an Irish wake (on Saint Patrick's Day, no less!) at his favorite local bar. It's a "Friends" type place where everybody knows Mike's name.  I promised to buy a drink for anyone who can tell a funny story about Mike-- gross exaggerations will be encouraged. My brother was very cooperative in the last few months about settling his affairs, so there really won't be much left for me to do as his executor-- just some forms to fill out and a final interment/memorial service in June. 

Farewell, dear big brother. From now on, I will imagine that you and Margeret are happily and forever sailing away to fascinating new harbors in Heaven.  

Login or register to post replies.

MarieM's picture
Replies 6
Last reply 3/23/2013 - 1:04am
Replies by: Janner, MarieM, jag

I just posted on the main board (which is so rare for me~) Dian called!! It was so exciting to hear her voice. Did you guys know she has an ACCENT? Who knew???? wink Anyway, she did 13 out of 14 bags, is having some side effects, handling them phenomenally.
She can't post herself because she is having some computer problems there..but she sounds soooo good! It was wonderful to hear from her as I have been thinking of her constantly. So sad there is a whole country in between us.

 

LOVE YOU DIAN!!!!! (SHOUTING UT OUT!)

 

Love, hugs, Marie

Login or register to post replies.

Pages