Newbie from the Northwest
I've had my first chemo treatment and go in for my 2nd one tomorrow. Chemo drugs are Oxaliplatin, 5FU and Leucovorin. I have 4 treatments of this (every other week), then a session of chemo/radiation together and then 4 more chemo cocktails. Total treatment should take 6 months.
After the chemo program my surgeon wants to take a look at me and reverse the ileostomy.
Here's my question for now. I've read lots on the discussion boards and the ileostomy reversal stories are pretty scarey. Is there anyone out there who has had a positive experience with the reversal? Does anyone REGRET having it reversed with all you have had to deal with? The bag is no fun, but some of the experiences I've read about are just about as scarey!
As for chemo the first round was no fun. I was sick for about 8 days - really nauseas. This next go around I'm trying a new nausea drug - Emend, which I hope will help. I'll also get a shot Neustra(sp?) to help my white blood count which dropped to .9 when they checked it two weeks after the first treatment. It was checked this Friday and it's up to 1.5 so they are planning on chemo for tomorrow (Monday).
Any input and/or suggestions would be greatly appreciated. I'm so not looking forward to these next 6 months.
Comments
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Hi,
I'm sorry to see you here but glad you found us. This site is wonderful. I'm sure some will chime in that have had the ileostomy. My MIL had one and a reversal. She has chrones but she would never go back. She still has problems but works around them. Guess it is just like getting used to the bag. I'm a 2 yr survivor of stage 3 with 1 node. I'm glad that they are changing your meds for the naucea. Smaller meals are good too. You find out what will help you eating too. Everyone is different. I found out that lemon drops helped that I got from Trader Joes. Kept my mouth moist and helped the sick tummy. HUGS and take one day at a time. That was my motto when going through chemo and even now sometimes. Make sure you tell the onc and nurse about any other reactions. Also ask about taking b complex now to make sure the neuropathy doesn't sneak up on you. I wish I had started after my first treatment. Take care and HUGS!!!
Lisa F.0 -
My tumor was also at the junction of the colon and rectum. I only had part of the rectum removed. My ileostomy was reversed in April '07. The first month was rough but after that things settled down pretty quickly. It hasn't been a picnic but wasn't too bad either. The only real problem was that I developed a fissure soon after the reversal. I am now pretty much back to normal. I eat regular food and don't have any control problems.
The chemo can be rough. I found that if I kept a little something in my stomach it helped with the nausea. I kept crackers in a bowl next to my chair and would eat them throughout the day. Also drink lots of water. It helps flush the chemo out of your system.
Good luck with the rest of your treatment.0 -
Hi,
I was diagnosed with stage iv colorectal cancer in June 2006 and had a temporary ileostomy for six months. I had it reversed last April and am doing great today. The first month was awful and I was so afraid that all of the horror stories I had read about were happening to me. But things really improved a month after the reversal. For the next couple of months I would have a bad day every week or so and I did have to time my meals carefully and be sure to be home at certain times. But I was able to leave the house for hours at a time without any issues. And as of today, I work long hours, go to the gym, have no diet restrictions and am just fine.
I suppose there are many factors that go into the success of the reversal and the quality of life afterward. I am young, 26, other than the cancer am perfectly healthy, and have an amazing surgeon who I owe my "back to normal" life to. I do know other relatively young and healthy people who haven't had the same luck with the reversal.
I know how hard of a decision it is. By the time my reversal surgery had come around I was pretty used to the bag and was so afraid of being a prisoner to the bathroom for the rest of my life. If you can stay committed to a special eating plan and stay positive hopefully the surgery will be a success. Please let me know if you have any other questions. I also had the same chemo and chemoradiation you are going to have so feel free to ask me questions about those things too.0 -
Hi NWGirl,
I am so very sorry you had to join us everyone here in the fight against the beast. However, the people who come here are unfailingly supportive, have great advice and allow you to express exactly what you are feeling.
I did not have an ileostomy, but I did the same chemo cocktail. My best advice is to eat small, even tiny meals, but try to do it rather often. Equally, or more important, you must stay hydrated. I know it is difficult to do that when you are nauseated, but you really, really must try. Don't be afraid to ask for extra fluid when you have your chemo. As for the nausea, I found that Emend was the best one of all the drugs. I think you will find the chemo nurses to be some of the most wonderful people in the world, and they have a lot of good advice, since people are always telling what works for them. Do what you have to do and stay positive. Your attitude defines your journey. Many hugs and good energy to you!
Kirsten0 -
I'm sorry about the news,but happy that you found this site that will be by your side,with lots of information and lots of love,about the reversal,I can not tell you anything,because I didn't need one, but for the nauseas, I used the EMEND and was wonderful,I can not remember not even one time with nauseas,so be glad that your insurance aproved it because are very vey expensive. I had the same chemo that you are having.Lots of hugs for you0
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HI Newbie,
Boy, are you in the right place. I was dx stage 3 rectal and just completed chemo 4 weeks ago. I was on the oxaliplatin and xeloda(same as 5FU but in pill form). The oxy was hard but the emend is suppose to be the best nausea medicine out there. Just like the previous posts water and crackers are your friends. I did not have a bag but the surgery took one half of my rectum so and I am still struggling with normalcy(is that a word?). Anyway just keep on posting and you will learn lots from these amazing people.
Robin0 -
Hi NWGirl!
Welcome to the Semi-Colons.
I am a 6 year Stage 3 Sigmoid Colon Cancer Survivor. I had 2 pos lymphs so not too many. I did not do any of the adjuvant chemo that was recommended but instead did Easter Medicine for healing from cancer. I do Western Diagnostics at the Mayo Clinic and fortunately have a fabulous oncologist who supports my decision to forego the chemo. Post surgery my cancer was cured by juicing fresh veggies, eating a macrobiotic diet, many herbs and supplements, keeping my body in an alkaline blood pH (cancer loves acid from sugar, white flour, alcohol, white grains, meat), exercise, yoga, counseling, you name it I tried it! :-)
So I can't help you on the chemo or bag questions but I can tell you that life will get better--and oh how sweet it is!!
Acupuncture is good for nausea too. After hanging on these boards for over 6 years what I have read is that drinking lots of water before during and after chemo is very helpful.
There is a good website to go to also for chemo info:
www.cancerdecisons.com
Here is my favorite cancer books list:
1) Beating Cancer with Nutrition by Patrick Quillin ( a must-have for every cancer survivor)
2) A Cancer Battle Plan by Anne Frahm (her inspiring story of curing her cancer)
3) Spontaneous Healing by Dr. Andrew Weil (he gives such a good spin on healing many areas of one's life)
4) The Makers Diet by Dr. Jordan Rubin (wonderful reference for good intestinal health--he has an inspiring story of healing from a potentially fatal intestinal disease).
Personally I found two things to be of vital importance in my healing from cancer (I have remained cancer free for these 6 years):
1) RESEARCH RESEARCH RESEARCH your options
2) BE YOUR OWN ADVOCATE (which means you have to educate yourself on your options which makes #1 highly important)
Hope this helps.
peace, emily the juice chick0 -
Welcome.
Many people have a reversal and although it can be difficult in the beginning, they are able to adjust. I was not one of them. i spent way too much time in the loo and 18 mos. after my reversal I made the hardest desision in my life and had a colostomy. I havent looked back and i have my life back.
You will get through this. It has been almost 5 years since my diagnosis, 3/17/03. Alot has happened since then, but I am Cancer free -- NED.
You can email me through this site with any specific questions.
You will get through this.
Maureen0 -
A big thank you to all who replied. I am so glad I found this group. It sounds like the ileostomy, like everything about cancer and its treatments, varies greatly from person to person. I am encouraged that at least for some people the reversal has worked out. I am getting used to the bag and it's not the nightmare I imagined. I'd prefer not to have it forever, but if I do, well, I'll deal with it.
Had my 2nd chemo treatment today and started taking Emend (for the nausea). So far so good - no nausea yet. This is a HUGE improvement over my first treatment. I don't get my shot for the white blood count until Wednesday or Thursday when the chemo treatment is finished (I have a 48 hour pump of 5FU); but my white blood count was 'normal' when they checked this morning.
Again, thanks to all who responded, I really appreciate you taking the time to share your thoughts, experience and advice with me. No one can better understand this than someone who has or is going through it.0 -
Hello Newbie; I am glad you found this website and I am also glad that I found this website. I was diagnosed in Jan 2007 with colon cancer and had surgery to remove along with an emergency appendectomy (sp) if not for the appendectomy the cancer would have not been discovered. Any way I had the same chemo cocktail every other week for 5 months and carried the 48 hour pump also.. Attitude is every thing, look ahead for the end result, stay positive.. if you feel down, ask for help.. there is always some one to help you out, cry if you feel like it. Stay hydrated, ask for extra fluids if you feel you need it, when you have chemo, eat small meals, but eat what you like, the taste buds might suffer a bit (mine did) but chocolate always tastes like chocolate.. I was given compazine for the nausea and Ativan for the anxiety.. the oncology nurses told me to take the meds, don't try to fight the nausea and anxiety on your own,(you don't have to be tough) just take the meds... so I did and had no problems, I realize that I was very very very lucky. I encourage you to talk, talk, talk, and ask ask ask... keep researching and always take charge of YOUR treatment... be a part and you will make the right decisions. Keep on coming to this site... we are all here because we care and we will support you. God Bless and keep dreaming big dreams...NWGirl said:A big thank you to all who replied. I am so glad I found this group. It sounds like the ileostomy, like everything about cancer and its treatments, varies greatly from person to person. I am encouraged that at least for some people the reversal has worked out. I am getting used to the bag and it's not the nightmare I imagined. I'd prefer not to have it forever, but if I do, well, I'll deal with it.
Had my 2nd chemo treatment today and started taking Emend (for the nausea). So far so good - no nausea yet. This is a HUGE improvement over my first treatment. I don't get my shot for the white blood count until Wednesday or Thursday when the chemo treatment is finished (I have a 48 hour pump of 5FU); but my white blood count was 'normal' when they checked this morning.
Again, thanks to all who responded, I really appreciate you taking the time to share your thoughts, experience and advice with me. No one can better understand this than someone who has or is going through it.0 -
I was dx with Stage IV back in April of 2005. I remember the cocktail well. You will experience some tingling in the hands and feet from the Oxaliplatin and you won't be able to touch or drink anything cold at least I couldn't. I have a temporary colostomy and I still have it. I've been NED (no evidence of disease) a few times since 2005 but not long enough to get my reversal. I'm hoping there will be a time that I can get it done. Best of luck and welcome aboard (to the board).0
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addendum:2bhealed said:Hi NWGirl!
Welcome to the Semi-Colons.
I am a 6 year Stage 3 Sigmoid Colon Cancer Survivor. I had 2 pos lymphs so not too many. I did not do any of the adjuvant chemo that was recommended but instead did Easter Medicine for healing from cancer. I do Western Diagnostics at the Mayo Clinic and fortunately have a fabulous oncologist who supports my decision to forego the chemo. Post surgery my cancer was cured by juicing fresh veggies, eating a macrobiotic diet, many herbs and supplements, keeping my body in an alkaline blood pH (cancer loves acid from sugar, white flour, alcohol, white grains, meat), exercise, yoga, counseling, you name it I tried it! :-)
So I can't help you on the chemo or bag questions but I can tell you that life will get better--and oh how sweet it is!!
Acupuncture is good for nausea too. After hanging on these boards for over 6 years what I have read is that drinking lots of water before during and after chemo is very helpful.
There is a good website to go to also for chemo info:
www.cancerdecisons.com
Here is my favorite cancer books list:
1) Beating Cancer with Nutrition by Patrick Quillin ( a must-have for every cancer survivor)
2) A Cancer Battle Plan by Anne Frahm (her inspiring story of curing her cancer)
3) Spontaneous Healing by Dr. Andrew Weil (he gives such a good spin on healing many areas of one's life)
4) The Makers Diet by Dr. Jordan Rubin (wonderful reference for good intestinal health--he has an inspiring story of healing from a potentially fatal intestinal disease).
Personally I found two things to be of vital importance in my healing from cancer (I have remained cancer free for these 6 years):
1) RESEARCH RESEARCH RESEARCH your options
2) BE YOUR OWN ADVOCATE (which means you have to educate yourself on your options which makes #1 highly important)
Hope this helps.
peace, emily the juice chick
That would be EASTERN medicine NOT Easter! haha. No jelly beans, marshmallow chicks or chocolate bunnies diet! HA!0 -
I have to admit I got a smile out of "Easter", but I knew what you meant. I do want to look into acupuncture. As far as other alternative medicines, I know Portland probably has good resources, but we're 30 minutes north of Portland in a small town that doesn't have much of that. I do appreciate all your information. Thank you for sharing it with me/us. :-)2bhealed said:addendum:
That would be EASTERN medicine NOT Easter! haha. No jelly beans, marshmallow chicks or chocolate bunnies diet! HA!0 -
welcome to our family, sorry you have to be here,
i had a reversal after 4 months. i guess i was really lucky thru the whole journey. i was dx 5/04 stage 2, colon was blocked. had 6 months 5fu,leu. everything went well. for me this site and a very positive attitude got me thru it.
only thing after the reversal the first time i felt gas and tried to pass, well i had an accident so please hit the bathroom until you feel confident.
be well
never,ever give up
bruce0 -
Hi,
I can't help with the reversal information but want to welcome you to this site where you can receive a lot of help. I live in Banks, Oregon so I think we are about the same time away from Portland...I hope your treatments don't give you too much trouble...Audrey0 -
Hi there,
Welcome..I am 34 and was diagnosed at stageIII with lymph involvement, had most of my rectum removed, and recreated with colon, as well as the exact same chemo. I was reversed(by request) before I started chemo., I have to admit, it was living hell for a while, but most recently have been feeling a new sense of "normal". I had my reversal in May 2006 and finished chemo. in Oct. 2006. I DO NOT regret the reversal. I never even considered not reversing it. My surgeon has been fantastic and soooo positive. I guess it's a personal choice but I am grateful for the decisions my surgeon encouraged me to make. So far I continue to heal, with a few minor setbacks. Maybe just waiting a while after chemo. to get reversed would be helpful, that way your body gets a chance to "calm down" As far as neasea, I didn't respond to anything at first and actually ended up spending every other week inpatient to get IV ativan and Zofran....which helped a great deal as well as lots of hydration, as I was too sick to eat and drink....Hope this helps!!! Feel free to e-mail whenever, I know I feel great being able to make it even a tiny bit easier on someone else. Best of luck!!! YOU CAN DO IT!!!!0 -
Thank you for sharing your story with me. My doctor definitely wants to wait until chemo is done. I've been told she is a very conservative surgeon, but based on my experiences with her, I'm not complaining. She is very good. The chemo is really hard right now - lots of diahhrea (funny since it's all in the bag), so I guess it's just as well it's not coming out the other end right now. :-) The more I read the more I think I will definitely give it a try. If it works - YAHOO!!! If not, at least I tried. And I guess with cancer that's a big part of it, just not giving up and keep on trying. Before my surgery I was having to go 8-10 times a day along with the beginning of control issues and rectal bleeding - so heck, how much worse could it be now that the tumor's not there wreaking havoc on my behind!kirsten1 said:Hi there,
Welcome..I am 34 and was diagnosed at stageIII with lymph involvement, had most of my rectum removed, and recreated with colon, as well as the exact same chemo. I was reversed(by request) before I started chemo., I have to admit, it was living hell for a while, but most recently have been feeling a new sense of "normal". I had my reversal in May 2006 and finished chemo. in Oct. 2006. I DO NOT regret the reversal. I never even considered not reversing it. My surgeon has been fantastic and soooo positive. I guess it's a personal choice but I am grateful for the decisions my surgeon encouraged me to make. So far I continue to heal, with a few minor setbacks. Maybe just waiting a while after chemo. to get reversed would be helpful, that way your body gets a chance to "calm down" As far as neasea, I didn't respond to anything at first and actually ended up spending every other week inpatient to get IV ativan and Zofran....which helped a great deal as well as lots of hydration, as I was too sick to eat and drink....Hope this helps!!! Feel free to e-mail whenever, I know I feel great being able to make it even a tiny bit easier on someone else. Best of luck!!! YOU CAN DO IT!!!!0
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