CancerCompass message board discussion started by Theresa W. on 7/11/2003 http://www.cancercompass.com/message-board/message/all,813,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ This is so close to the end if the chemo & radiation doesn't get completely rid of it I have to have a permanent bag. I'm a 44 year old women who still thinks she's 21. I ride my own Harley and like to dress in cute outfits to go to rock concerts. I love my long hair. I guess that will all change with a bag on my side. I know that's all the vain stuff that shouldn't matter and I'm gonna have to do a lot of growing up. I don't know much about this. I guess if the chemo & radiation works (and it hasn't spread anywhere else) I won't need the bag but that's not my luck. Can anyone let me know anything about these bags or this kind of cancer & treatments? It's a scary time and I'm searching for info. There's a lot of unknown in front of me. I've only just been told and have no real info yet. Thanks. Theresa Winter Theresa W. Fri, 11 Jul 2003 00:00:00 GMT New to this site but I believe it was fate to read your message first. I have had an illiostomy since Sept 1994 due to colon tumor. Entire Large Intestine/colon & illium had to be removed. I am much older than you but it was very traumatic at first. The first piece of advice I can give is to make sure you have the best product and fit for you. Anything else will be very hard on the nervous system and stress is one thing you do not need. I found the contoured wafer to work for me. After that I can change and go on to better things in my day. Years later had Rectal and anus area removed due to rectal cancer. Now it is in the fatty tissue in pelvis just above what was rectum. It is possible to swim, go biking, or whatever. Cannot advise on the BR thing as I am over it. Little humor there. The main think is KEEP YOUR SPIRITS UP try to laugh at yourself when a circumstance it really comical and not a poor me thing. It will help you and others around. Friends and relatives alike. It does get better with a little time. It is ok to contact me at anytime if I can help you in any way. Nita Nita P. Sat, 12 Jul 2003 00:00:00 GMT Theresa, If you are going to lose your hair due to Chemo, you might see about getting it made into a wig? Or you could donate your hair to locks of love organization who makes wigs for children with cancer. Keep your spirits up, this is a great place for support. Thanks Wendy Wendy S. Mon, 14 Jul 2003 00:00:00 GMT My wife is 34 with 2 kids and found out on Dec. 5th 2002 that she has stage 4 colorectal and had a colostomy installed. What that meant was that she had to remove her belly ring and start fighting to main control of her life. She went into surgery a size 7 and came out a size 12. She went from being miss thing to not - at least in her mind. She will always be beautiful to me but she doesn't want to hear it. She is 5'10, 145 lbs., long dark hair with highlights and Mediterranean skin color through Dec 5th. She is upset with herself but I tell her to be healthy and get skinny later. You won't necessarily lose your hair, it depends on the drugs. I have been battling this with her for the past 7 months. I keep her spirits up and try to keep her from the day-to-day rollercoaster. She has the tougher fight but it is hard as hell to watch her struggle with this. We are in NJ. Write back when you get this. I have done a lot of searching on this. I maybe able to help you save time and get what you want or direct you to answers. eric s. Wed, 16 Jul 2003 00:00:00 GMT Eric, Is her colostomy permanant? Did they put her on drugs that made her gain weight? Was it steroids? I figured I'd be losing weight not gaining. She's lucky she has you! Keep letting her know who much you love her & that she's beatiful in your eyes. I'm hoping I will be able to hide a lot from my loved ones so it's not hard on them to be around me. I'm trying to keep joking and laughing and stay myself. With 2 kids you have your hands full. I guess I wonder about what chemo & rad is like and what it's like to have the colostomy. I found a place called the colon cancer list that has helped with a lot of info. Try http://listserv.acor.org/archives/colon.html Theresa W. Wed, 16 Jul 2003 00:00:00 GMT Yes, her colostomy is permanent unless there is a miracle. Not sure what caused the weight but she hasn't been eating a lot. She did have a hysterectomy so it could just be a chemical thing. My wife is the most vain woman on the earth and she hides the bag by wearing long shirts or sweatshirts when wearing shorter shirts. Stay away from radiation; do with 5-fu leuciovorn and cpt-11 - thinning of hair, not loss, and the most effective treatment to date. I have talked to Sloan, Fox Chase, Texas U, Harvard and many other cancer centers plus I get monthly email to me for the latest and greatest. There is one guy in Washington D.C. but it is very radical and risky but the pay off is high. Other doctors don't agree. How is your hog? eric s. Wed, 16 Jul 2003 00:00:00 GMT I was feeling too vain when I was told about the bag. I'm not a beauty but I try so hard to make my appearance as good as possible. I work out so hard and I love my long hair. I didn't want to lose it. I love my clothes so I knew I would have a major change in how I dress. One of the things that makes concerts and bike events so much fun for me is picking the right cool outfit. I've spent a fortune on my clothes; it seems such a waste now. I also was worried about riding, I can't give that up. I've been hit by a car on the bike and my son & father told me not to ride anymore and I couldn't wait to get my bike fixed and ride again. They thought I was nuts. It means the world to me. I've been told I can still ride with one so that makes me feel better. I just won't be able to dress like a biker babe. But with guys like you we should be ok. Theresa W. Wed, 16 Jul 2003 00:00:00 GMT Theresa, Look at the bright side - no more need for pit stops. They have different bags that are like zip lock and easy to dispense. The hardest part is accepting it for yourself. Others will accept it easier than you think. Are you on treatment now or what? My neighbor has a Harley and just got his pipes blown out. You ever go to Sturgis? In NY they have a run from PA to NY with police escort, like 5000 bikes. Where are you from? Don't let cancer get you down. Be yourself and be strong. eric s. Wed, 16 Jul 2003 00:00:00 GMT Hello, I read your message and in a way I see a lot of my mother in your story. She is 44 years old and in April went into surgery because of a blockage in her intestines and had found that her cervical cancer that the doctors thought was cured, had spread throughout her omentum, an area surrounding the small instestines. The doctors decided to give her an illiostomy then, which is different than what you may get, but she now has a bag she has to wear. Since she has only had to deal with this for 3 months, it is a struggle for her to deal with. I know she doesn't like it, but she is trying to be positive that after she beats the cancer, it will be reversed. You must think positively, and know in your mind that you will beat this. God Bless you, Emma Emma L. Thu, 17 Jul 2003 00:00:00 GMT One dream of mine is to go to Sturgis. Everyone I know has been. I've seen all the pictures. I planned last year to go this August but then we were supposed to go to Maine for my boyfriend's family reunion then that got canceled. The new plan is August 2005. We are saving money for it. One of the things that upset me about the bag was thinking I wouldn't be able to ride to Sturgis. I also want to ride in the mountains in Colorado. I was born in this town in Florida and have never been anywhere. I've never seen snow or mountains. I've only been to Georgia and Alabama. I want to travel more then anything. I love the no more need for pit stops! I'm not on treatments yet. I have my 1st appts. next week with the chemo & radiation dr's so I don't know what to expect at all. Where on the body is the bag? I heard some bags can be the size of a credit card. Is it on the side or the front? Above the belly button or below? Do you just throw away the bag and put on a new one when it's full? Theresa W. Thu, 17 Jul 2003 00:00:00 GMT Thanks Emma, Can you tell me anything about the bag she has? What size and where it is on the body? I'm a strong person I've been through so much and come back laughing and loving and I know I can handle this. It was quite a knock down at first but I'm sure it would have been worse if I wasn't so strong already. My boyfriend couldn't believe how calm I was when they first told us. But the bag thing hit me hard. Too much vanity. In that regard it's time I grow up. Theresa W. Thu, 17 Jul 2003 00:00:00 GMT The bag location is off to the left side of your belly button and equal to it or just below it. They are disposable and at first they give the cleanout kind but quickly upgrade to the zip lock easy to dispose of kind. The size is like 4" long by 2" wide and obviously hangs down but if your shirt covers your waistline then you won't have a problem. Or if you are wearing a vest, just button the bottom 2 buttons. My wife is on Leucovorin, 5fu and cpt-11 cocktail and no radiation. Radiation kills everything good or bad and chemo is a little more centralized but not much. Ask your doctor what he thinks. You are spoiled down there with good weather cause after last winter and living it with shoveling and all it quickly got old. But if you don't even know that you are getting the bag then worry about it later. Once you start treatment at least for us it became more of a day-by-day thought process. eric s. Thu, 17 Jul 2003 00:00:00 GMT I live in the world of bikini's and sungoddess's. And most of the time it's too hot to wear much clothes here. I know I wouldn't want to live in snow but I want to see it before I die. I do live in a beautiful place but I can't compare it to anything since I've never been anywhere. Theresa W. Thu, 17 Jul 2003 00:00:00 GMT With chemo you may not tolerate the sun too well anyway cause my wife although used to worship the sun needs A/C now because with chemo the heat seems to be accelerated. eric s. Thu, 17 Jul 2003 00:00:00 GMT I have done some networking with Stage IV Liver Colon cancer - 4 of them have had their lung nodules dissipate or go dormant as well as their liver tumors reduce - some to the point that surgery would be an option...all of them were on Oxaliplatin with Leucorvorin and 5FU. Also did a lot of research through clinicaltrials.gov - Avastin, Erbutix and Terceva were the drugs that I was trying to add but timing was not right for me I am 41 have gone thru one round of chemo - have a good active life still and plan on keeping it that way. Good luck and let me know if I can offer any more info. Laura J. Thu, 17 Jul 2003 00:00:00 GMT I hate the heat already and love my A/C. I figured I'd have to lose my tan. My boyfriend said this might be the time we should tear the bike down to go over everything and change my front end and get my paint job. If I'm feeling too bad to ride and it's too hot and I need to stay out of the sun the bike may end up sitting a while getting lonely. I get a lot of sun sitting in traffic and riding around during the day. Some times I hate riding during the summer cause the heat is soooo bad. I've been thinking I'll be a bald, pasty white, old biker lady in baggy ugly threads melting in the sun. What a sight. Theresa W. Thu, 17 Jul 2003 00:00:00 GMT I have no idea what kind of chemo, radiation or drugs I'll get but I'm hearing a lot of the same names. Glad to hear you're living an active life cause I do so much, I'm hearing a lot of positive from everyone and it really helps my outlook. Theresa W. Thu, 17 Jul 2003 00:00:00 GMT I think oxiplatin 5fu and leucovorin is the next step. Hopefully it's not the last step. I am still researching what is beyond that. There are other drugs, just have to find the right cocktail. eric s. Fri, 18 Jul 2003 00:00:00 GMT Thera, Hi. How are you doing? eric s. Wed, 01 Oct 2003 00:00:00 GMT Hi same here. What kind of chemo are you getting? I'm getting oxiliplatin and 5fu. What stage are you? The doctor told me I'll definitely need a reversible colostomy for the first few months after surgery but he's hopefull it won't have to be permanent. Depends on how I respond to the chemo and radiation... just to keep things in perspective, a bag is not fun but your life is more important. good luck Glitcher Wed, 17 Nov 2004 00:00:00 GMT I  have had my rectum removed and have a temporary loop ileostomy. My stoma was placed high and ends up at my belt line. There is a product that is called ostomy armor. It is a guard that covers the stoma and also provides a drainage path.. I can now wear the same clothes that I wore before the sugery. (It is worn under your clothing and is barely detectable if you wear a tight shirt). It has allowed me to work in the florida sun with no problems....seatbelts are no trouble as well...it was developed by an ostomate for his own use...dd don327 Wed, 22 Aug 2007 00:00:00 GMT