Lots of "Newbies"

StacyGleaso · January 2006

I'm sure a lot of the veterans here have notices the influx of rookies to our family. I think we should take a minute to do as we've done in the past and give a brief message of hope to them with our own little success stories. Don't you think? I also encourage all the newbies to read the web pages. It will give you a WHOLE new insight to this disease, and all the people who have proven the system wrong with their successes.

I was diagnosed at 33, over 4 yrs ago. Normally a healthy female. Ended up being stage 4, lost 40% of my liver, and haven't had cancer since my surgery 4 yrs ago. There IS hope. There are several people who tackled their "beast" with chemo and radiation; some with only nutrition; and others who combined both. OBVIOUSLY, everyone is different, and what may work for one, may not work for another. So DON'T immediately jump on a bandwagon of treatment without discussing things with your doctors. If your docs don't make you feel comfortable with the degree of info they provide, find another doctor. WE PAY THEM, WE DESERVE PROPER CARE AND TREATMENT! Do NOT listen to statistics! Many people here have proven traditional statistics wrong. As I like to say....if your doctor can predict your expiration date, have him also give you a few winning lottery numbers, too!

You will find a wealth of support here. We even plan international field trips! You can browse the Expressions Gallery listed on the left of the home page to see our latest trip to Vegas by typing in colon in the search section of the Expressions Gallery.

So keep the faith everyone!

Stacy

jerseysue · January 2006

Stacy first of all thank you for your message. I am also a female that was diagnosed with stage 4 cancer just this past April. The cancer got all my girlie parts but it didn't hit my liver. I will show my husband your message because he is just so frightened that it will come back. I keep telling him that I'm strong and that I can beat this. I too am "young" 42 and we have 6 children so I told him I'm not going anywhere. Thank you for your support and inspiration.

StacyGleaso · January 2006

jerseysue said:
Stacy first of all thank you for your message. I am also a female that was diagnosed with stage 4 cancer just this past April. The cancer got all my girlie parts but it didn't hit my liver. I will show my husband your message because he is just so frightened that it will come back. I keep telling him that I'm strong and that I can beat this. I too am "young" 42 and we have 6 children so I told him I'm not going anywhere. Thank you for your support and inspiration.

Sue,

You are MY inspiration! 6 kids?!?!?!? I have 3 (ages 6, 8, & 11) and there are days that I don't know which end is up! Yeah, you're not going anywhere...you have too much to do here on earth!

All my best,
Stacy

JADot · January 2006

Hi Stacy:

Thank you so much for your thoughtful and heartfelt message of hope! I feel so fortunate to have my CSN family around, always with useful information and alway with a upbeat message. Thank you to all of you!

4 years and living strong - you're an inspiration! You go girl!!!

I've been an avid cyclist and a big Lance Armstrong Fan. I've donned my LiveStrong wrist band and I am telling everybody I meet to get tested early. Who knows, maybe I'll be well enough to ride in the Ride for the Roses in Texas later this year!

I will check the field trip pages. I'd love to meet you all!

JADot

gasman49 · January 2006

good advice. Maybe one day with the advances being made there won't have to be any more newbies, but in the meantime this site works wonders.

kangatoo · January 2006

gasman49 said:
good advice. Maybe one day with the advances being made there won't have to be any more newbies, but in the meantime this site works wonders.

Great idea Stacy!I have been coming here since about oct.03. I was dx'd 2/3 bowel blockage by a tumour in the area where the sigmoid/descending colon meet.I was staged 2 with no node involvement and had resection aug.03 followed by 6 months 5fu/leucovorin.Had some major complications with surgery due to an epidural which did not work effectively which had me in the ICU with very little pain control.(don't let that sway you from having an epi tho...I was 1 in 1000 that it did not work) Some complications also with heart related to chemo.
It seemed that lots of things my body did not like!.but I can laugh now!
I am NED(no evidence disease) since my BEST REPORT EVER feb. o4.
This site has been an incredible part of my journey and I will continue to come here....IT'S PAYBACK TIME!
For all our new friends...give this site some time, it may seem that it takes a little to break the ice but future friendships will be honed by staying with us all. I have friends here all over the states, canada and the uk as well as in other parts of the world including oz.I am so proud and humbled to be able to know them all!
Huggs to all and to our new friends...do not despair.we will help you thu this.
Love....Ross(aka, kangatoo,kanga,kangathong) and his lovely wife, Jen

spongebob · January 2006

Great stuff, Stacy -

Thanks for the post - Semi-Colons ROCK!

- SpongeBob

fedester · January 2006

hi stacy great idea !!!!!
i was dx may 04 stage 2 colon.tumor removed nodes were clean. did 6 months chemo, had resection 9/04. did well thru chemo. i joined this group i think 6/04. i have alot of respect for everyone here and the members who we have lost. i have been away for a while but i read this site everyday. so far i am ned since 5/04. i thank god for finding this site it has gotten me thru a lot. there are a lot of success stories in this family of ours, newbies you can never give up. you have to fight this dragon with everything you have.
stay the course
keep the faith
never never give up

all the best
bruce

oneagleswings · January 2006

Great idea and even with "non success" stories like my husband's it still gives hope- to know that even with grim news- we can talk in terms of years for survival...with I'm sure many more drugs and treatments on the way...
so..my husband was dx stage 3 in June/04- surgery followed by temp ileostomy (reversed)...6 months of chemo (5 FU) via bolus...then 3 mos later dx with stage 4 with mets to liver and lungs...he has just completed his 4th treatment of folfiri and avastin and is tolerating fairly well...
The "hope" part is that it has been 19 months since his diagnosis during which time we have travelled- enjoyed life and our kids (15 and 18)- and he has worked through most of this...so to the newbies- don't despair- you or your loved ones will be around for awhile yet...so never give up hope!!!
Bev

ron50 · January 2006

G'day Stacy,all the old Timers (like Bob and Kanga) and all those newer folk that have sadly joined our band. We did not ask for cancer but it happens and so we deal with. I was dx in jan 98 with an agressive stage 3 tumour of the descending colon , it was in 6 of the 13 lymph nodes they removed . I had surgery and 48 sessions of chemo lasting nearly a year. I have had no signs of cancer since ,the 21st of jan is my eighth anniversary and the start of year 9 of survival. I wish the same good fortune to all of you ,Ron.

nanuk · January 2006

JADot said:
Hi Stacy:

Thank you so much for your thoughtful and heartfelt message of hope! I feel so fortunate to have my CSN family around, always with useful information and alway with a upbeat message. Thank you to all of you!

4 years and living strong - you're an inspiration! You go girl!!!

I've been an avid cyclist and a big Lance Armstrong Fan. I've donned my LiveStrong wrist band and I am telling everybody I meet to get tested early. Who knows, maybe I'll be well enough to ride in the Ride for the Roses in Texas later this year!

I will check the field trip pages. I'd love to meet you all!

JADot

I also "was" an avid cyclist,and although I haven't ridden in quite a while, I keep my 1983 Trek ready and waiting. Now that I've relocated to warmer climes, the prospect of getting back in the ride is closer to reality. I am also a Lance fan-his 1st book helped get me through my surgery and adjuvant therapy five + years ago. GO Lance! And you WILL ride in the Ride For The Roses..Nanuk

Lisa Rose · January 2006

Hi Everyone,

Like Stacy, I would also like to Welcome All Newbies to our wonderful CSN Family. As for myself I had my surgery March 20,2002... Diagnosed Stage 3 with 10 positive lymph nodes. Now with almost 4 years behind me ( knock on wood ) all is well and I'm truly greatful for that.

Lisa Rose

PS: I'm joining the juicing world, I ordered my Champion last Thursday....

rthornton · January 2006

Hi Stacy, and newly-diagnosed friends,

I was diagnosed stage four this past May. I had a total colectomy, and began a regimen of 5FU + Avastin and Oxaliplatin every two weeks. I was scheduled for 12 cycles but I did not tolerate the chemo well so we changed the drugs after eight cycles. Now I get Erbitux and Avastin. After the sixth chemo cycle I had a PET scan that showed complete remission. I am hoping to keep the cancer at bay with the Erbitux and Avastin.

Good luck to everyone old and new to CSN.

Rodney

RunnerZ · January 2006

Great idea Stacy. I am amazed how "old" I am getting on this site. I am a 43 year old husband/father diagnosed with stage 3 rectal cancer at the age of 36. Preoperative chemoradiation, surgery and chemotherapy, the follow-up. Now, 7 years later, I am here running, working and raising a family. I also had the privilege of appearing on the TODAY Show after my diagnosis and treatment (I had many of the same Dr.'s who treated Katie Couric's late husband. I offered hope to viewers, and should offer the same to all of you. The first days, weeks and months are so very difficult. They rock your very foundation. But you slowly rebuild your life and your strength in this journey of cancer. I remain disease free and otherwise in excllent health. My advice is excercise (as much as you can tolerate with your Dr.'s approval) and FUN! Do things that please you, that make you laugh, that force you to engage in life. Run, walk, bowl, garden, ice skate, do crossword puzzles, watch Yankee games, play Nintendo with your kids...or grandkids..or youself. Do something, anything, to keep living while you recover from this difficult disease! GOOD LUCK all you newbies!

jana11 · January 2006

Stacy, such a great idea.

I was diagnoses 10/02 at 32 yrs old and am so happy I found this site. I was orignally stage 3 rectal cancer with 3/13 lymph nodes. Unfortunately, I had a lung nodule - turned out to be a met, removed 4/04. Then, 10/05 another lung met seen and I started up chemo again. I MAY get my entire right lung removed, waiting for more results.

Good news: I have worked through all my treatments and surgeries. My family is amazing, and my co-workers are unbelievable. My life, though full of chemo and other treatments, is blessed.

All you newbies... hang in there. It does get better. "this too shall pass" Keep your heads up and stay strong. My goal remains CURE.
jana

Betsydoglover · January 2006

I think of myself as a "newbie" but I have been coming to this site since June so maybe not so new anymore.

Like Rodney I was diagnosed last May with stage IV (sigmoid colon tumor, 1 met to the liver). I had surgery and then from mid July through November underwent 6 cycles of Xeloda/oxaliplatin/Avastin. I'm currently NED after the 6 cycles and am on a chemo-break for a while.

My PET/CT results have been somewhat interesting. Initially I had only a CT scan which showed a tiny "suspicious" spot on the liver (which migh "just" be a cyst) - during my colon surgery I had a biopsy that came back positive - hence stage IV diagnosis. After surgery, but before I started any chemo, I had a PET/CT. The PET lit up, but the lit up area did not match at all the "spot" on the liver. Docs actually wondered if the "spot" was nothing and if the wrong area had been biopsied positive (still of course a stage IV diagnosis). After two chemo cycles I had another PET/CT - that time the PET was negative, but same spot still showed up on CT - no bigger, no smaller. Finally after 6 cycles, I had a PET/CT and both PET and CT show nothing! Good news for me. Now that I am off chemo for a while I feel great. I know at some point I will need to go back on it, but here I am 6 and 1/2 months after diagnosis and I feel good and have no evidence of disease.

So, there is hope and my best advice to anyone is to stay away from survival stats on the internet and instead try to develop a positive attitude and concentrate on getting well.

Betsy

Moesimo · January 2006

I also want to welcome all the newbies. I wish there weren't any new folks, but......

I was diagnosed at 46 with stage 3 rectal cancer, 3/17/03. I had chemo/rad. and surgery on 6/26/03 with a temporary ileostomy. I had my ileostomy reversed on 8/18/03 and then 4 out of 12 chemo treatments. I had really bad diarrhea and ended up in the hospital and chemo was stopped. I continued with many poop problems such as diarrhea and incontinence. My life revolved around a bathroom and many tears due to my sore butt. I spent about 3 hours a day in the tub and was working full time. To improve my quality of life I had a colostomy done one year ago on 1/14/05. I haven't looked back and feel great. I have been hospitalized 11 times. It hasn't been easy, but I have been NED since my initial surgery. My PET scan was negative last week.

It's not an easy road, but it can be done and does get better.

I agree with all the above posts, but would watch the Red Sox instead of the Yankees like Runner suggests. lol

Maureen

kangatoo · January 2006

Moesimo said:
I also want to welcome all the newbies. I wish there weren't any new folks, but......

I was diagnosed at 46 with stage 3 rectal cancer, 3/17/03. I had chemo/rad. and surgery on 6/26/03 with a temporary ileostomy. I had my ileostomy reversed on 8/18/03 and then 4 out of 12 chemo treatments. I had really bad diarrhea and ended up in the hospital and chemo was stopped. I continued with many poop problems such as diarrhea and incontinence. My life revolved around a bathroom and many tears due to my sore butt. I spent about 3 hours a day in the tub and was working full time. To improve my quality of life I had a colostomy done one year ago on 1/14/05. I haven't looked back and feel great. I have been hospitalized 11 times. It hasn't been easy, but I have been NED since my initial surgery. My PET scan was negative last week.

It's not an easy road, but it can be done and does get better.

I agree with all the above posts, but would watch the Red Sox instead of the Yankees like Runner suggests. lol

Maureen

Update...take note newbies! Today I went for my CT scan. I have an incredibly supporting doctor who knows just how important and worrying these tests are for us..so she phones me the minute she gets the results.....thats what I call caring for her patients!
So here is the great news guys n gals...I am still an incredibly happy NED!......YIPPEEEE!
So I re-iterate,don't despair all you newly dx'd newbies who have an uncertain future to face.....sometimes the cards are stacked against us but even tho we have the right to worry...there can be some great results too!
Hang in there friends, Ross and Jen

ps......who you callin' old Ron?...lol!

JADot · January 2006

kangatoo said:
Update...take note newbies! Today I went for my CT scan. I have an incredibly supporting doctor who knows just how important and worrying these tests are for us..so she phones me the minute she gets the results.....thats what I call caring for her patients!
So here is the great news guys n gals...I am still an incredibly happy NED!......YIPPEEEE!
So I re-iterate,don't despair all you newly dx'd newbies who have an uncertain future to face.....sometimes the cards are stacked against us but even tho we have the right to worry...there can be some great results too!
Hang in there friends, Ross and Jen

ps......who you callin' old Ron?...lol!

Congrats Kangatoo!!!

Yippeee, whoowoo & 3 cheers for Kangatoo!!!

livin · January 2006

Welcome Newbies, I know I am Blessed Had Breast Cancer, Insitu had a Lumpectomy started on Tamo xifen for 4 and 1/2 years then Femara. That was 5 years ago, this October will be 6 years cancer free for that. Unfortunally had a different cancer no metasts. Colon Cancer in 2001 stage 3, 2 pos nodes had a left hemi-colectomy chemo and radation. 2004 had a metasts.(from the colon cancer) to the liver large mass about 20-25% of liver removed Chemo,NED since August 2005. I will have another CAT scan this month. I am just grateful to still be here after going through 3 cancers and as everyone saids look Dam Good-smile. I KNOW THERE IS HOPE, I AM LIVIN PROOF.

ernie53 · January 2006

I'm an old Newbie. June 20,'03 I was dx'd with hemangioparicytoma, a 6 1/2" sarcoma mass in my lower abdomin. This type is not responsive to chemo, and after 30 rads we found out that it doesn't respond to rads either. I went in for surgery to remove prostate and part of bladder along with the tumor. 15 hours later I awoke to find that the Monster had attached itself to my rectum, colon, bladder, and prostate. The good part is that they are all spare parts. I'm a 2 bagger now, which sucks because I haven't found any shoes to match my bags. I was back at work full time as an industrial electrician 3 months after surgery. There have been a few bumps along the way, but I sure have met a lot of fine folks. I didn't look into a lot of research for diets because I couldn't find much information about the type of cancer I had except that it was rare. My Oncologist says that I'm a miracle, I say I was just too dumb to die. Anyhow, I'm planning on being around for a long time, I have gotten involved with ACS on the regional level, and I get a lot of satisfaction from being supportive of all our fellow Cancerians. May we live to hear our grandkids say "didn't there used to be something called cancer?"

Lots of "Newbies"

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