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Stage IV long term survivor

madu
Posts: 53
Joined: Mar 2005

Hey all,

Just wanted to take a moment to introduce myself. I was diagnosed with stage IV rectal sigmoid cancer with a met to the liver in Aug. 1998 at the age of 31. Within 24 hours of diagnosis through a C-scope (totally unexpected), I was in the hospital and operated on - resection of colon and liver. I "did" 8 months of chemo (5 FU and leucovorin) and 28 sessions of radiation. I also have a double lumen port. I went into remission pretty quickly (1/99) and have stayed that way (woo hoo). I'm on the down hill slide toward my 7th anniversary - NED. It's a wonder to me and my onc. - but we're not complaining! Recently met with him and he said I have a greater chance of getting a second kind of cancer (which scared the heck our of me until he clarified that that chance was no greater than anyone elses) than the colon cancer returning at this point. Hard to believe - I remember talking with my mom about funeral plans and wills and instead, over time, I've bought a house, adopted 2 dogs and a cat and am making long term plans with my beau.

Of course, it was not all a bed of roses and CC still rears it's ugly head every once in awhile but I wanted to let people know that it is possible to fight this thing and come out of the other side.

I'd be happy to offer support or talk to anyone going through this process. I can't say I did anything magical or special but I'm here if anyone needs me.

Heidi

littlejulie's picture
littlejulie
Posts: 311
Joined: Mar 2004

Hi Heidi, Thanks so much for introducing yourself to us. We need to hear stories like yours. You will be a great model for many people on this discussion board. Thanks for checking in.

ron50's picture
ron50
Posts: 1279
Joined: Nov 2001

Hi Heidi,
I was st3 six bad nodes and max aggression, I've slid past year seven and into eight. I had a similar conversation with my onc and surgeon. I too have no idea what I did right ,whatever it was I wish we could bottle it and save a lot of wonderful people. I think that you are wonderful for posting and giving a lot of folk who have lost hope renewed hope. If not before I'll catch you on the chat in another seven years, it's a date ,congrats Ron.

madu
Posts: 53
Joined: Mar 2005

It's a date - even though it's been 6 1/2 years I still love to hear about other long term survivors! Good luck to you!

alihamilton's picture
alihamilton
Posts: 344
Joined: Jan 2004

That is so encouraging especially for those who have been told that their prognosis is not good. It goes to show that noone can say how any individual will do with treatment. We all have to keep hope alive, no matter what the odds are.

madu
Posts: 53
Joined: Mar 2005

Have you ever read Stephen Jay Gould's essay called "The Median is not the Method"? (http://cancerguide.org/median_not_msg.html). I used to work for his publisher and someone sent it to me and I loved it. He had abdominal mesothelioma with an 8 month survival median and with research he discovered it was a right-skewed bell curve - in other words a spike of deaths within 8 months followed by a long tail of survivors. I was blessed with an onc who never took my hope away and the sheer stubborness to say "if my odds are 1 in 5 why can't I be the 1?" Did I mention Gould lived for over 20 years before another type of cancer got him? NOONE knows for sure what cancer will do so I just vowed to keep on going and it worked (at least so far :)

alta29's picture
alta29
Posts: 435
Joined: Mar 2005

Thank you, thank you !!! I was recently dx with stage IV and you have no idea how much this help. I know that we can win this battle, but we need people like you to reassure us that we will be OK...Please keep in touch with us...

bcmeaks
Posts: 22
Joined: Apr 2004

It's great to meet you Heidi and hear your wonderful success story! Best of luck for continued good health!

fedester
Posts: 736
Joined: Jul 2004

hi heidi,
wow great to hear from a survivor like yourself. we need someone like you around here, there are a lot of new family members here. you are a true insprition. keep up the great work and here is looking towards your 7 year goal ned
all the best
bruce

taraHK
Posts: 1961
Joined: Aug 2003

Thank you for posting. Your story, and those of other long-term survivors, provide so much inspiration and hope to people like me. I love it!
Tara (2 years and ticking....)

laurlc
Posts: 3
Joined: Mar 2005

Hey, it was so great to read your message!!My dad has just been diagnosed with rectal cancer on friday and we do not know anything,I have never felt so lost and my dad too!!We went for his first cat scan today and an ultrasound next week-can you tell us anything about this cancer we would appreciate any information that you could give us!!

grandma047's picture
grandma047
Posts: 381
Joined: Feb 2004

It was great to hear such an encouraging story. I've had rectal cancer three times in less than two years. Going through rough chemo now. Didn't get to do last round due to low blood counts and the tumor is growing, so I need to take it. Stories like yours give me hope that someday I will be able to say that I'm all clear. Can't wait for that day.
Love and prayers, Judy(grandma047)

rejoyous
Posts: 259
Joined: Nov 2004

I love hearing this. Thank you for checking in and BIG BIG CONGRATULATIONS!!!

jana11
Posts: 708
Joined: May 2004

Thanks for sharing such a great story!!!!!!! I am a 34 yr old stage 4 gal... and assume I am cured, because I can!
jana

sojourner2
Posts: 7
Joined: Feb 2005

Heidi,
Thanks for sharing your story of victory. I am so happy for you, and I inspired to fight even harder. I am a 55 y/o male who was diagnosed in 10/2004 with a Stage IV rectal tumor and mets liver.
May God Bless You and Your Family,
Ron

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Wow Heidi...now don't you go anywhere! There is so much you have to offer here and as the others have said---SO much encouragement. Well done gal!
Welcome to our family.
Kanga n Jen

JKendall
Posts: 186
Joined: Nov 2004

Heidi, where have you been???? Your story is great encouragement! My wife was diagnosed in October, 2004 with stage IV, mets to both ovaries, a few lymph nodes, removed part of her colon and hysterectomy. She completed 23 of 30 scheduled radiation treatments before she got too sick and weak to complete the process. She's now done two of six scheduled folfiri chemo treatments, and that's making her pretty sick already. Every little pain and weird feeling, bloating, etc., makes her worry. One doctor we went to basically told her to get her affairs in order; another was so apologetic because he couldn't do anything for her.

Jerri is fighting this thing. I hope I can convince her to talk to you and others on this site who have offered to talk to her about their healing process.

I'm rambling...but THANK YOU for posting your good news! PLEASE hang around for the rest of the survivors and caregivers, who are just plain tired and worn out from this wild roller coaster ride, and who can gain some strength from you.

Jimmy

madu
Posts: 53
Joined: Mar 2005

Hey Jimmy,

I know what you mean - I wish I'd had someone to talk to when I went through treatment. I live in FL and virtually everyone in my onc's office was older - I felt so alone. They all felt sorry for me - "you're so young" and on the rare occasions I saw someone younger (twice I think in 8 months) we just wanted to hang onto each other. I was lucky to find two people on line my age who really helped but that was months in.

I'd be happy to chat with your wife - I do buddy work for the Colon Cancer Alliance. As to every little pain, I sometimes felt like a hypervigilant hypochondriac - she will worry about things - it's natural. I picked up a book called "What to Eat when you have Cancer" (check your library) and it addressed various problems (ie throwing up, diarrhea, etc.) and what you can do/eat to combat them. For example, I developed lactose intolerance after radiation - my onc thought I was crazy but I just bloated up with milk products. It eventually went away but I only figured it out because of the book.

I hope your wife is feeling better soon!

Heidi

JKendall
Posts: 186
Joined: Nov 2004

Hey Heidi, yeah, Jerri's only 47 and no one in her family has a history of cancer. This was a huge shock, right out of left field. She's active, eats well, no smoking, only occassional wine...NOTHING bad! Except me stressing her out for the last 27+ years.

Nothing bad except stubborness when I try to get her to talk to others who have gone down this road before, and could probably reduce some of the fear and anxiety, and give the other survivor someone else to relate to, and feel like some good has come from this whole hellish ordeal. Talking is good for both people!

We've bought several books about nutrition, many of which are recommended by several people on this site (Thank you to Emily and all the book list contributors). I think we have the one you mention, I'll have to check.

Anyway, I'm getting frustrated after a long day and my rambling is morphing into ranting...raving is next.

Thank you again, so much. I'm sure we'll be exchanging notes again soon!

Jimmy

Shandle
Posts: 205
Joined: Apr 2005

Hi Heidi! I'm new to this web site. I just read your reply to madu and I must say it was very encouraging. I have stage IV colon cancer as is has spread to my liver. I'm currently still fighting. Thanks for the encouraging words. Wanda

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