Stage IV..Roll Call for the Undead Please

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11/8/2010 8:25pm
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Replies: 116

Been a lot of dying going on around here due to melanoma  of late, but there is also a lot of living going on as well.

For those of you that don't know me, please do not think I am being cavalier about people dying from melanoma.  My girlfriend died in my arms as a result of melanoma(who I met from here by the way).  I have been Stage IV melanoma since 1996 and was Stage III 9 years before that and am now in my 8th recurrence as I am in the middle of my 23rd year since diagnosis with an unknown primary.

  Many people from here, both dead and alive I have met physically over 10 years  of posting here when it was MPIP and more than once I wish it was me that died and not them.  They fought hard, did the stinking surgeries, did the stinking treatments, did the stinking clinical trials and suffered and fought with silent screams as they awaited scan results and fought hard with many by their side

.  Even today, those caregivers and families continue the fight against melanoma in the honor of those they lost on the cancer battlefield with events, fundraisers, quilts, campaigns and are standing on the doorsteps of government to build on their legacy.

Every one of them bitch slapped melanoma, drug it down the glistening hallways of clinics, radioology departments,  hospitals, and with broken bottlles jabbing at melanoma with real anger and rage in an effort to defeat it drug it to the gutter and gave it their all.

So, to those we have lost and their families and caregivers, I salute you.

However, to paraphrase my supercalifragilisticexpealidocious super melanoma buddy Amy Busby,,,,,,,,,,,,,,,,,not today.

So I would ask that all of you Stage Fouries chime in, declare yourself undead irrespective of the odds and say "not today"

Sick, lame and lazy, speak up Stage IV people.  One of our only many jobs is to show others that in spite of the odds and statistics, people DO live and survive melanoma.

Call me undead.  Speak up please Stage IV people!

 

Charlie S

 

Yahoo Charlie ...way to tell it.  Not stage 4 but love your attitude. 

Mary

Stage 3

Life is too short to be anything but happy. Falling down is a part of life, getting back up is living.

"Being Irish, he had an abiding sense of tragedy, which sustained him through temporary periods of joy."

One of my favorite quotes ; )  Yes, there are a lot of losses but hell, we are all terminal cases, as Garp said.  People DO survive this disease and  don't ANYof you give up.  Will never did, and got upset when anyone suggested he should.  It feels bleak at times, especially when the toll of melanoma get high around here.  I took a big emotional hit when Sharon in Reno entered hospice (anyone hear from her?).  

Live, laugh, hope, and hang on - better days may be coming.
 

Way to say it Charlie.  I fight this damn thing everyday. But I live my life. Love my husband and Love my kids like never before.  Have had 1 major surgery, and 2 other hospital stays.  I now poop out of my stomach but I am still here and fighting.  Starting IPI in a week

Life is still good.

melanoma is a word...not a sentence

Thank you for reminding us what we are all about.

Stage IV and Undead.

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

I officially joined Club 4 a few months back after some of my numerous lung spots got over 1 cm and thus became "....clear evidence of metastatic progressive deseise"  or sumthin' to that effect.......

I AM the Walking UN-Dead !  

Saluting ALL reluctant recruits of Club Mel. !!   Reporting to duty , Sir !

 

Pvt. 4th Class  Grady "Shady" Lewis, 

3rd Class April 2009- August 2010

Served 11 mths.in I-fearon, now active on frontline defense of Avistan, Taxol, carboplantin.

If need be, will ship out on secret mission "quest for the Trial".

God save the Queen, and please pass the grits.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

Me too  - Stage IV and blessed to say undead!  DX in 2001, 5 recurrences all together including one lung met which got me to Stage IV in 2007.   I have been incredibly fortunate to be living with a more "indolent" (as the docs call it ) and manageable version of this disease.

That I will NEVER take that for granted is an understatement ..

Mary

Well said Charlie.  We have had lost some beautiful people recently (as we have in the past).  It was time to give words of encouragement for those struggling with the beast.  Fighting it since 2008, after 3 recurrences, I had the misfortunate of graduating to Stage IV this spring (the only graduation I wished I'd flunked!).  Currently on ipi, I'm living life to the fullest, enjoying my hubby and family, smelling the roses with deep breaths, more so than I ever did pre-mel.

Stage IV and Undead...Val

Live Laugh Love
Nothing is worth more than this day!

Well said, loud and clear!  So much inspiration is to be found on this board.  I try to soak up every bit of it and hope one day to pass some of it on to others.  Thank you Charlie S. and everyone else who reminds me to stay positive and enjoy my days of health (Stage IIIC). 

And, by the way, not to sound too whiny, I also get a little tired of the hype the seems to surround other cancers.  Please do not take offense, anyone - my dearest friend has breast cancer, but I've told her that if I get one more prescription from Walgreens with a pink cap I'm going to give it back and demand black!!:)

 

I hear ya.  I'm all about cancer awareness, but I am soooooooooooooooo tired of pink since I saw, with my own eyes the black melanoma tumor extracted from my body.

....melanoma is still not a "popular" cancer, which is part of the problem.

 

Charlie S

Anonymous - (11/9/2010 - 6:10am)

I totally agree with you about all the "other" cancers.  I posted earlier about it.  Why does melanoma not get the recognition that other's do, especially breast..., LIke you said pink,pink,pink what about black,black,black???? 

 

well I would use both pink and black pill bottle tops, but of course and for always black should be (for us all) the predominate colour but lets face it to the world at large boobs are cuter, than big black ugly things called melanoma.  So since I am boobless, what is more visible to me is my eylidnessless and my booblessness, and still my first words are  "I have melanoma'

Pink is not a nice colour and tis not nor never has been one of my fav.  Now black is always in fashion,  how come that is, yet we cannot get folks to notice melanoma.... hmmm

 

(but not stage 4)

Just Keep on Hanging In

I'm another Stage IV and I've been Stage IV over 5 years now.  Scans are coming up this week...that part never seems to be less stressful.

 

Stay Strong

King

 

Stage III Unknown Primary 3/2004

Groin dissection 4/2004 NED

Interferon 5/2004-4/2005

Liver mets 7/2005

Liver resection (70% of liver removed) and gall bladder removed 9/05  NED

Phase II clinical trial of GM-CSF 12/2005-11/2006

Peri-pancreatic tumor and one subq in hip/butt  2008

Surgery to remove pancreatic tumor and subq  2008 NED

 

Hang onto hope and live each day to the fullest!

Best of luck on those scans!!!  Will be thinking/praying for you!

-Rocco

Luke 1:37

Yeah, stage IV here too. Not a great place to be, but it does teach one to live life more acutely. There are worse things that could befall us. I just posted on my blog today a few of the things I've learned from cancer (www.theogler.blogspot.com). Our stories need to be told. Be bold. Be brave.

Well said Charlie! I am also stage IV did the Biochemo hell for a year and a half. I am 4 years NED. I do look at life differently now. I just celebrated my 50th birthday this summer and I consider every day a gift! At the time of my diagnosis I was given 6 to 9 months if I did not go through treatment and as hellish as it was, I would do it again in a heartbeat!

Suzanne

Every day I wake up is a gift!

Undead here!  Original primary in 1979. Many other primaries to follow.  Fast forward to 2006 when I went to stage IV. 5 recurrances but surgically NED- 3 weeks!!!!   Scans in 1 month. 

I've also lost too many friends on this board but I'm a better person having met them.  I've also met many survivors of stage IV!! 

As I inch closer to 4.5  years since my stage IV diagnosis I've learned to appreciate many things I wouldn't even have noticed before.  I do agree with some of the posts - my mom died of breast cancer but I am getting soooo tired of people thinking it's the only cancer around! 

Living life and loving it!

Linda

My husband joined the stage 4 club last December.  He has melanoma and basal cell.   He has had numerous biopsies, 10 surgeries, Interferon, radiation, and IL-2 all without any success.  Finally, we found a MEK clinical study which he started in May.  His scans are showing that the tumors are shrinking...the lung mets are no longer measurable!!   He is able to do almost everything that he wants and he is enjoying each day!!  We feel very blessed at this time.  There is hope.  He continues to fight and life is good!!

Pat

Thank you Charlie for calling out the "guardians" of this discussion board. It is the first time I could actually feel a positive presence happening, reaching out... I wish it could happen more often. The last few months on this board has been depressing but I also understand the black fear and its fingers reaching in places most of us don't want to look to closely.

I can't get my husband back on this board to post his thoughts/feelings... he says it's too cold a place. Well, I just want to thank everyone here for posting and witnessing that you are all still "living" life and that you find life is worth it, kind of like "pulling up the boot straps" if you know what I mean.

Keep sending your positive messages and keep your sense of humor, this board needs it.

Deb

lovingwife to Bob, stage 3c

Well Chales, true to form I wrote a lovely email to you and lost the damn thing !! Thank you for all your inspiration and caring ways. You have made a difference in so many lives, for warriors and caregivers alike. You have been in the unthinkable position of having been both.. Keep up the good fight, stay well, and post often...Cheers, dear friend...Warpie

Yay Charlie for saying it so well!

Carmon in New Mexico here, one of the Stage IV Undead - 57, married but no kids other than 6 horses, 3 dogs, 2 cats, 2 goats, numerous freshwater fish, and I still take care of them all and love living in the mountains of northern New Mexico!

Diagnosed 3b in 9/2008 after WLE/SNB for upper left arm primary, followed by left axillary LND 1/2009. I stayed NED until 6/2010 when a metastasis to my brain that hadn't shown up on my regular scan began bleeding into my brain. It took away my NED status and jumped me to Stage 4 without a chance to pass GO! 

I had an emergency craniotomy to relieve the bleed then Gamma Knife Surgery in July to stop the bleeding tumor and also a smaller one found during the high res MRI mapping process.  Follow up scans in September found a new tumor on my right adrenal gland and I started a drug trial combining carbo, taxol and temodar in October.

This tumor could be surgically resected but we decided to see if we can find something that will shrink it first. I am also waiting for dna testing to come back to see if I am c-kit positive. Surgery to remove the adrenal gland is still on the horizon at some point but for now, I call it my 'canary in the coal mine'because it will tell us when we have found something that will work on my particular brand of sneaky melanoma! A new brain MRI done in October showed the big brain tumor that bled had shrunk by 50% after gamma knife and the tiny one is remaining stable and is probably now just scar tissue.

Somehow, I have never felt that this disease will defeat me. It might end up killing me, but it sure isn't ever going to defeat me! The very best to you all, my fellow survivors, as well as the ones who have moved on and most certainly, to all of you caregivers who make it possible for us to keep moving forward in love and hope!

Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011.
It’s not what happens to you, but how you react to it that matters. ~ Epictetus

My dad has been Stage IV since 2007.  His original diagnosis was in 1998.

He's been NED since 2008, after 6 months of biochemo, followed by 6 months of maintenance IL-2.  He's 67 now and still going strong--not today is right!

Krista

FREAKIN' UNDEAD IS RIGHT!  

Finding myself on this side of the dirt at this stage of the game is a reward I relish everyday!  I, too, have lost many a friend to this bitch, orphan of a disease.  

I am thrilled to find my post listed along with so many inspirational HEROS and SHE-ROS.  When I was told in 2006, that I had roughly 6-9 months, I NEVER uttered those words to anyone.....I felt if I did, I would give that ugly death sentence LIFE.  I'm here to tell you ..... it isn't a DEATH SENTENCE... Fight and fight hard,,,and no one said you have to fight FAIR either!  

EDUCATE yourself and your families.   DO NOT wait for the phone to ring with and appointment, or a path report, or lab results....DEMAND QUALITY MEDICAL CARE.  I have FIRED more MD's than I currently employ.   If you need a treatment.....GO AFTER IT....Demand it!  Yell long and loud...DEMAND answers, treatments, cures!  At every opportunity OPEN your mouths and make your needs known!  

I know I sound a bit Militant...but make no mistake....I am!  I am running this race to win....not just to merely finish.  

Wishing all my  STAGE 4 Brothers and Sisters....WELLNESS.   Wishing PEACE to all who have lost loved ones....

Love...

Debbie STAGE 4 NED

grdngt@aol.com

Amen to that Debbie!  So well said by you and everyone else!  I am Stage 3, but I appreciate the advice from all the Stage 4 Warriors!  You guys ROCK!!!

Wendi   =)

Thanks for the call to arms my friend!  I'm sitting here in a hotel in San Antonio waiting on my 2nd ipi dose.  My outlook is not necessarily right for everyone.  But for me it released my anxiety & fear to embrace the reality that melanoma will probably kill me, and far sooner than I'd like.  But not today.  Each and every day is a victory.  And I'm gonna fight and scratch for every one.  And day by day those days will stack up and I'll look back at a mountain of days that have made a lifetime.

I've been here 7 years.  Sometimes it feels like an eternity.  I have met and loved and lost so many friends.  Brave, compassionate, much loved, wonderful people.  I fight on for them.  And for my family.  And for all my friends who are also still fighting & those who care for them.

I'm now 7 months out from my leptomeningial disease diagnosis & the 2-4 month prognosis it carries.  Well F you, melanoma!

Stay Strong!

Stay strong
You are not lost
Come on and fix your eyes ahead
There's a new dawn to light our day, our day
You've gotta stay strong
You and I run
For the prize that lies ahead
We've come too far to lose our way, our way
 

Love,

Amy
 

I continue to praise God in this storm, counting my blessings & enjoying my "bonus time!"

( ( ( AMY ) ) ) ) ...you are running this race to win....eyes forward...focused!  Rock on my Mela-Sista...You are indeed an inspiration to us all!  Stepping out of the comfort zone...Pushing the envelope always forward!  For all who read the MPIP......This is a voice of truth....tells the story....personal victory.  Every day with her children and husband is a good day.  AND she still continues to praise God.  

Love you, God Bless...

Debbie

Praise God for the "mountain of days" that you leave your imprint on the world, Amy! Love you! - Jackie 

Stage IV and not dead. Been through lots of @#%@ but to busy enjoying my 3 children and husband to let it get me down. Thank you for reminding us to live life to the fullest!

Laurie

Love you, Charlie!!! And I am SOOOOO NOT DEAD!!!

- Jackie Doss, Stage IV (NED for 4 years... and not expecting it to come back!)

I AM UNDEAD!

Not today, and probably not tomorrow either. 

KatyWI

DX stage III 2001; stage IV recurrence 2009; currently have subQs and brain mets; hope to be starting ipi in two weeks.

 

Thanks Charlie, I think we all needed this today.

Just keep going!

Hi Charlie,

Our friend Jerry Ellis told me about you, and you two both certsainly have that fighting spirit that help inspire others to keep fighting.  I am still a newbie here ans appreciate what you and other MPIPers have done to help others over the years.  You and many others make this community a special place, and have helped me in many ways since my diagnosis, for which I am eternally grateful. 

I am Stage IV, diagnosed 3/15/10, unknown primary, lung mets, began Ipilimumab+Temador Trial at MD Anderson on 8/3/10, scans on 10/26 showed treatment response - stable disease with some tumor reduction, continuing treatment.  There is hope for melanoma patients with treatments that can slow, stop, and even reverse this damn disease.

Stay positive, live each day to the fullest, and get the best treatment you can find. 

Best Wishes,

Jim

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