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Calling All Newbies

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

Hello to those new and relatively new to the boards!

There are quite a few new names these days. If you have introduced yourselves already I apologize for not remembering, but please take a moment to tell us your story and introduce yourself!!

We love to welcome new ones here (sad that you are here, but happy that you join in) and celebrate your inclusion into the Semi-Colon Club!

So I'll start.....

Stage 3 lymph pos zero mets sigmoid colon cancer. Survivor of 4 years so far!! WOOHOO!!

I didn't do the chemo but opted to heal my cancer with alternatives.

I have 5 kids and my youngest was 20 months old at my dx. I am married to my best friend who has been so supportive every step of the way.

Are you familiar with the personal web pages on the boards? It's a great way to share your story and read ours too.

WELCOME!! Join in and feel free to tell us about yourselves.

peace, emily who wants to meet y'all!

tkd3g
Posts: 768
Joined: Aug 2004

Hi Em.

I just replied so you wouldn't have that lonely old "0" replies. :)

Everyone is just being a little shy, that's all.

Hope you are doing well.

Barb

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

Hiya gals....I just replied 'cos I like to read my name...lol!
OOPS.....sorry newbies, just tryin tah tell you all to chill.
Now c'mon..don't be bashfull!
kanga

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

Haha! thanks barb! you always take good care of me!

peace, emily

midnte0708
Posts: 166
Joined: Jul 2005

Hi Emily,

Actually it is my father who has cancer. He discovered it in 1993 (big huge tumor) had a colon resection followed by chemo. Then again in 1996 they found another tumor, another colon resection followed by chemo.
Since then he has been "clean," colonoscopy every 6 months except for the last 2-3 years he put off his appointments until I kept reminding him to go (wish I would have done it sooner though!!!!).
He was just diagnosed about 2 weeks ago with mets to the liver and an "unidentified" 4cm mass in the thyroid area. His liver tumors are in both lobes and cover about 1/3 of the liver. The doctor mentioned chemo with or without radiation and possibly surgery. I think he is on FOLFOX + avastin right now.
I belive the doctors seem optimistic in the sense they told my father there are many new great chemos introduced recently and that if one does not work they will try another and since they mentioned surgery I believe it may be in an operable spot.
He just started chemo Monday so I hope all goes well and I hope he does not get all the extreme side effects the doctors warned him about.

After reading all the statistics on the internet it was great to find this board! It gives me hope that he will be OK.
I see so many of you who overcame this disease. I am also shocked at how many young people in their 30's and younger who are affected. I thought my father was young at his first diagnosis at 50 (he is 62 now).

Congratulations for your 4 years!! and thank you for staying on the boards giving the rest of us hope!!

Sue

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

Hi Em, I thought I would chime in also...hopefully to bring some of the newbies out.

I was diagnosed Stage 111 with 2 pos. nodes in 2002, took 6 months of chemo with 5FU, CPT11, Leukovorin. Had a recurrance after 1 year but no mets to other organs just in a few lymph nodes. Went on Oxaliplatin and Xeloda...last 3 scans have been clear...still on Xeloda/Celebrex combo as a maintenance program. Just playing the waiting game right now, but feel great. I go back for another scan on Aug. 27, so the jitters of anxiety are coming upon me. Wish me luck.

To all you newbies, this is the best support site. We welcome you and hope we can all give each other the emotional support we need to beat this dreaded disease.

We are having a get-together in Oct. 25 - 28 in Las Vegas. Anyone interested, we'll get the information to you. Everyone is invited to attend.

Kerry

HisJoy's picture
HisJoy
Posts: 115
Joined: Feb 2005

Not sure if I qualify as a newbie, since I've been posting on the boards for about a month now, but I thought I'd chime in.

Stage IIIC colon cancer dx in January 2005 with 5 positive nodes out of 13 removed. Two more nodes looked suspicious, but couldn't remove them due to proximity to major artery. Tumour was poorly differentiated, signet ring cell, which is a rare, very aggressive type of adenocarcinoma and does not respond well to treatment.

I had a right hemicolectomy in January right after dx, then had a port inserted a couple weeks later. The port has caused some problems, as they had a heck of a time getting it in there and ended up having to use a pediatric port. I have chronic pain in my right shoulder, but it's only when I move my arm too far in any direction, so it's manageable. Just hoping the pain goes away after I can have this port out!

CT in May showed no mets to other organs (yea) and CEA was down to .8 (yes, that's POINT eight, less than one!) at last blood draw. I have complications with my liver, though, because I also have NASH, non-alcoholic steato-hepatitis, and my liver is not functioning properly so the last FOLFOX treatment had to be postponed. I am on an "every three week" cycle already due to my poor liver, so this will be 6 weeks between treatments. I have had 10 treatments with only 2 to go, after which I will continue on Avastin alone for a full year. At least, that's the plan.

My chemo cocktail is FOLFOX plus Avastin with Eloxy and decadron as the pre-meds and an added drip of calcium/magnesium to mitigate the effects of the neuropathy caused by the oxaliplatin. I also have a Neulasta shot after each treatment because white blood count dipped down to 1.9. Platelets have also been as low as 59 (50 is seriously low), but they have come back up on their own, praise God.

I also am diabetic, which is not under as tight a control as I HAD it before the cancer dx, due to the effects of chemo. In addition, I have only 1/2 of a working pancreas - born with what they call pancreas divisum. My grandmother and great-grandmother both died of colon cancer, so I am just beginning genetic counselling and screening to see if I have the HNPCC gene. (heriditary non-polyp colon cancer)

As a diabetic, I have been religious about eating fruits, veggies, and whole grains while avoiding saturated fats and processed foods.

I love reading the posts on here, especially the success stories.

Hang in there!
His Joy is My Strength
Bonny Buffington

CAlba
Posts: 4
Joined: Jul 2005

Hi Emily and all the other folks out there...
I was diagnosed in June 05 with colon cancer, had resection surgery, and then a PET scan. Have microscopic cells in liver - which totally freaked me out. Anyway, I'm doing the chemo thing twice a month with Folfox (sp) and all that other stuff. I will have another scan in 4 months, if the cells are there in the liver, then we will do surgery. I want to have another colonoscopy immediately to check out that also.
Any thoughts from yall on that? Thanks for this discussion board... I'm so worried and scared at times, but I do believe that God is in control and with his grace and mercy I will carry on. Take Care!

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

Thanks for responding! I was hoping to flush out some new ones here since lately I have not had much time in here to get to know the new ones and read their posts. I feel bad about that, but it's summer what can I say!! :-)

Nice to meet you.....hope some more will join in!

peace, emily

big_al
Posts: 15
Joined: Jun 2005

I was diagnosed in April, 03 after emergency surgery for an intestinal blockage. A one inch tumor was removed from my ascending colon. I was stage II, and did adjuvant therapy (5FU and leucovarin) for six months. After six months my CEA was 1, and all looked good. Three months later my CEA was 14. After CT and PET scans it was discovered that I had "multiple small lesions" in the liver. I was put on Camptosar (CPT-11) and 5FU+leucovarin for another six months. This kicked my butt physically (mostly fatigue), but made significant progress with shrinkage. At the beginning of this I had a colonoscopy which showed nothing. My oncologist (actually I've had two, but that has to do with moving), decided that I was a good candidate for an infusee pump, which is inserted into the abdomen and delivers a drug (FUDR) directly into the liver. Meanwhile I had the summer off and went to England, and then to Ireland (for work). Unfortunately I am one of the 10% percent of the population that has two hepatic arteries, one to each lobe. So we decided to remove the left (smaller lobe) and then insert the pump. This was major surgery, in August of 04. I didn't really completely recover until December. Meanwhile the pump has to be refilled every two weeks, two weeks of FUDR and two weeks of heparin. There are no side effects from this sort of chemotherapy. This worked somewhat, but my CEA went back up and a CT found a spot in my lungs. So I went back on CPT-11 + 5FU + leucovarin in January. I just completed this series three weeks ago. A May CT was deemed "confusing" as to the lungs, and my current CEA is below 10 (2 months ago). So here I sit, with no hair, but some time off from chemo. The side effects on the second round of CPT-11 were MUCH less severe than the first time. Indeed I was able to go to Germany in June, in between treatments. I don't know what the future will bring, but so far, I'm hanging in there and plan to go to Spain in October.

big al

Doreen65's picture
Doreen65
Posts: 52
Joined: Aug 2005

Hi everyone, I wanted to introduce myself and let you all know what I have been through in the last year. My name is Doreen and I was 39 at my diagnoses. I was diagnosed stage IV last Feb. o4 with a rectal mass about 2 cm. low in the rectum it had metasitized to my liver. I believe I had 3 spots on my liver two of which went completely away with chemo. The third I was able to have a liver resection on January 4th 2005. I had chemo from last April 04 8 rounds.......Oxaliplatin, 5fU and Leuvicorin excuse my spelling if these are wrong. I also had Neupogen shots all through my treatments to keep my white blood cell count up. Last September 04 for 28 straight days I had continuous infusion of 5-FU while doing radiation for the rectal mass. Radiation was no big deal until I hit my 17th day on and my skin started to burn off. I toughed it out for those last 11 days and tried every creme on the market. Warm water baths were my relief. I actually ate dinner in the tub many nights.... :o(

In January 05 I had my liver resection they removed part of the right lobe of my liver. They told me they felt it was pretty sucessful and did an ultrasound while they were in there. After my surgery I believe (I have a hard time remembering it clearly I think we block it out) 5 weeks later I started back on chemo for 4 more rounds to make 12 all together. The last 4 were the hardest for me just making me really tired. I was nauseous but never threw up Zofran helped. To the colo/rectal surgeon's amazement the rectal mass has dissappeared. He tells us requiring no surgery. To this day this still scares me. Lets see since surgery I had a Pet Scan in April which was clear thank you GOD. I have had two blood tests so far first CEA was 1.8 and my last one was done two weeks ago and my CEA was 1.1. Last Monday I had to go for a MRI I was terrified to say the least and they called to say that was normal also. I know I should be so happy with all of this but I am still terrified. I have to go in two weeks again to go see the colo/rectal surgeon so he can check to see if the rectal mass is still gone. He explained to my husband and I about his theory on doing an operation in that area that may not be necessary. He felt 100% postitive that if he removed my rectum and sent it off to a pathology lab there would be no cancer. How would you all feel about not having surgery to remove that area? I am just so afraid because they didn't do surgery the cancer may return there. I know I have written so much but it takes along time to write all I have been through. I really would like to hear from others that have shared my experience and of course from some long term survivors. I will say that through all of this I never once stayed home and sulked about it ....... My husband and I are very active people with three teenage children so we are always on the go. Geesh I even stained my deck last summer with my continuos infusion pump attached to my waist. LOL Well I have written enough and if I've forgotton something I will add it. I just copied this from another subject it was easier. Doreen ~

carolina2
Posts: 2
Joined: Aug 2005

Hi Doreen,
I am with you on this... I wrote up earlier in the day about my diagnosis.. I also had to take neupogen injections this week because my white cells have been so low. I've only had one chemo treatment so far because of the low white cells. Did your doctor give you Avastin? I'm getting that in addition to the other treatments - it's suppose to be good in cutting the blood supply off to other tumors. I also have two teenagers and I just thank God for each and every day. We just have to hang in there... Never ever give up.

HisJoy's picture
HisJoy
Posts: 115
Joined: Feb 2005

Caroline - I also get Avastin with my FOLFOX chemo regimen. Does yours make you nauseous and out of breath? I have to continue Avastin treatment for a full year after chemo is over and am not sure what side effects will continue once the other drugs are dropped. This past week, they had to withhold my chemo due to major liver problems, but they DID give me Avastin alone. I experienced nausea (the worst yet), and still am having the fatigue, diarrhea, out of breath feeling and weakness. Avastin also gives me nosebleeds. I was just wondering if I have these side effects to look forward to for the entire year I'm on Avastin alone.

Great to make your acquaintance!
BB (stage IIIC colon cancer in right, ascending colon)

cal79
Posts: 57
Joined: May 2005

Thought I would also pop in and say hi! I've been reading the boards since april this year, when I was dx with a 6cm rectal adenocarcinoma at age 25. Had an ultra low resection with a temporary ileostomy. Still waiting for the reversal, but was very lucky as this was stage 1. Am about to start testing for hnpcc involvement. Since I have been dx I have lost 2 friends to cancer (one age 29 and the other 46) so this has been difficult. However, I have not allowed this to affect my life in too many ways, in fact I have just accepted a scholarship to start my PhD next month. The only noticeable thing left now is the 33cm scar (and I'm only 164cm tall!). Oh, and the bag, I forgot about that! Take care everyone. Cal :)

Firefighter35's picture
Firefighter35
Posts: 10
Joined: Jul 2005

Hello all, I am still fairly new to the boards, a month or a little more ago i found this site. I was dx in Jan. 05 with PSC {Primary Schlerosing Cholangitis} in my liver which led to a colonoscopy. They found a mass and it came back postitive. After a second opinion and a lot of testing to be cautious with the liver i had surgery on May 27, subtotal colectomy. Pathology came back as 2 of 28 lymphnodes positive. So being stage 3 i started folfox 6 on Aug. 11 so only one treatment as of this writing. Thanks to everyone here for all of their information and support. I wish i would have found this site earlier on.
Take care all.
Tim

chynabear's picture
chynabear
Posts: 483
Joined: Jul 2005

I was dx on Oct 5, 2004 (the day after my 27th Birthday) with Stage III Colon Cancer in the Sigmoid Colon One Node Positive resulting from a juvenile polyp I had for around 10 years.

I had a colon resection on Oct 8 and the port installed Oct 29. Went through 12 treatments, six months, of Oxiliplatin, 5-fu (44 hr pump), and Leukorvin (sorry for the spelling). My Red cound dropped a few times and I had to receive a couple of shots to counter this, but never any delay in treatment... just achy bones. Luckily, I remained healthy during treatment and had minimal side effects, mainly fatigue (severe towards the end) and diahrea with a few bouts of nausea. And a severe dislike to the terrible chemical smells.

I had a PET and CT in Nov which came back clean and had a PET/CT in July which came back clean. My CEA had me a little nervous at 1.1, although it is still within the normal range of 0-2.5.

This site is incredible for giving hope and helping others. After treatment ended and I thought life would begin I suffered a severe bout of depression because I didn't feel like I was fighting the cancer anymore and had a hard time sleeping. Since finding this site, I have learned that there are great resources to learn about prevention. I have since started fighting through Lifestyle and diet changes and feel 1000 times better about my outcome.

Thanks to all of you who have helped me, probably without even knowing you did.

God Bless,

Tricia

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