chemo questions

cherriann

hi all,
well it is 2 weeks post surgery and im getting better everday. still finding it hard to sit for long but other then a infection im not doing to bad. do have some depressing days dealing with the colostomy but i think that may be in due part of not being able to go anywhere and being jealous of all the people out and about. i will soon have to make that dreaded chemo decision and not sure what to do. i guess the approach will be oxiliplatin?. anyways at stage 2 with no nodes involved what are your thoughts? any input will be apprieciated.
thanks again, cherri

fedester

hi cherri,
glad to hear you feeling better. is the bag temp??
i was stage 2 also but had 5fu and leu for 6 months. i also had no nodes and did chemo as a precaution.
keep i touch.
be well
all the best
bruce

lfondots63

Hi Cherri,

I'm glad you are feeling a little better. I'm sure the bag is a drag (no pun intended) but there are others that may be able to help that lead regular lives. Did you talk to an ostomy nurse (think that is what they are called). She could give you good tips and if you check out this site there are lots of tips and websites. About the chemo, that is a tough decision. I just went through a bad treatment of chemo. Made me dehydrated and sick. Was asking myself the same question about stopping chemo. I'm doing better now and will continue. I have a treatment next week so we will see how it goes. It is a very personal decision. My children made me continue because they were upset I was "quiting". I don't feel like it is quiting, I was just feeling so sick and you get tired of feeling sick. The folfox (with the oxiplatin) is used for stage 3 but I'm suprised that it would be used for stage 2. Have you tried alternative treatments like supplements and a diet change? There are others (like 2bhealed and scouty) who were stage 3 and did not do chemo and are NED today. Please tell us what you decide and know that we are behind you whatever you decide. Think of us holding your hand to get you through. HUGS!!!

Lisa

vinny3

Hi cherriann,

I was wondering how the surgery went. It is a big adjustment for the colostomy but really in a month or so you won't think that much about it. In many ways it is easier than always having to know where a bathroom is. Remember to see if you can get the opague bags. I use the wide outlet ones too with a filter and it isn't so bad. The most persistent problem after surgery was drainage from the rectal wound.

I too am considered Stage ll but because I had prior chemoradiation they say it is possible I could be Stage lll, especially after having a recurrance after the chemorad/local excision.

It is a tough decision regarding chemo. My oncologist first said no chemo after my AP Resection and then two weeks later called, said she presented my case to a Tumor Conference and the consensus was to do the chemo (doing Folfox/Avastin). Got another opinion and he also recommended Folfox and told me he would have done it after the first surgery. I was initially determined that I would not do chemo but after searching the medical literature decided the odds were better for me to do it to prevent recurrance. In addition I am doing some reading on nutrition and plan to change my ways as I agree that alternative methods can be helpful.

Sorry for being so long-winded. Will pray for your continued good recovery. ****

cherriann

vinny3 said:

Hi cherriann,

I was wondering how the surgery went. It is a big adjustment for the colostomy but really in a month or so you won't think that much about it. In many ways it is easier than always having to know where a bathroom is. Remember to see if you can get the opague bags. I use the wide outlet ones too with a filter and it isn't so bad. The most persistent problem after surgery was drainage from the rectal wound.

I too am considered Stage ll but because I had prior chemoradiation they say it is possible I could be Stage lll, especially after having a recurrance after the chemorad/local excision.

It is a tough decision regarding chemo. My oncologist first said no chemo after my AP Resection and then two weeks later called, said she presented my case to a Tumor Conference and the consensus was to do the chemo (doing Folfox/Avastin). Got another opinion and he also recommended Folfox and told me he would have done it after the first surgery. I was initially determined that I would not do chemo but after searching the medical literature decided the odds were better for me to do it to prevent recurrance. In addition I am doing some reading on nutrition and plan to change my ways as I agree that alternative methods can be helpful.

Sorry for being so long-winded. Will pray for your continued good recovery. ****

thanks vinny.i apprieciate the long wind. it seems are situations are very alike. how are you doing on the chemo. would like any links to nutrion sites too.
thanks again, cherri

cherriann

fedester said:

hi cherri,
glad to hear you feeling better. is the bag temp??
i was stage 2 also but had 5fu and leu for 6 months. i also had no nodes and did chemo as a precaution.
keep i touch.
be well
all the best
bruce

permanent. already did the 5fu before surgery. just want to be well. thanks bruce
cherri

cherriann

lfondots63 said:

Hi Cherri,

I'm glad you are feeling a little better. I'm sure the bag is a drag (no pun intended) but there are others that may be able to help that lead regular lives. Did you talk to an ostomy nurse (think that is what they are called). She could give you good tips and if you check out this site there are lots of tips and websites. About the chemo, that is a tough decision. I just went through a bad treatment of chemo. Made me dehydrated and sick. Was asking myself the same question about stopping chemo. I'm doing better now and will continue. I have a treatment next week so we will see how it goes. It is a very personal decision. My children made me continue because they were upset I was "quiting". I don't feel like it is quiting, I was just feeling so sick and you get tired of feeling sick. The folfox (with the oxiplatin) is used for stage 3 but I'm suprised that it would be used for stage 2. Have you tried alternative treatments like supplements and a diet change? There are others (like 2bhealed and scouty) who were stage 3 and did not do chemo and are NED today. Please tell us what you decide and know that we are behind you whatever you decide. Think of us holding your hand to get you through. HUGS!!!

Lisa

hey lisa,
your right about tired of being sick. plus more weight loss really has me worried. im afraid of blowing away now as it is.thanks for the input. cherri

scouty

Hi Cherri,

I was dx stage 4 in 2004 with mets to liver and left lung. Surgery was not an option for me so I did do chemo Folfox with Avastin for 8 long months (the first 6 were a cakewalk almost). But the side effects really started getting to me. I felt like the chemo was killing me. I knew I couldn't just stop chemo, I had to make huge lifestyle changes or the cancer would kill me. I found a naturopathic doctor with a PhD in Clinical Nutrition to help me and I completely changed my diet to all natural/organic foods, juiced, and took supplements. It was the right decision for me at the time but I have to tell you it was the hardest thing I have ever decided to do.

I agree with Lisa that Oxilaplatin is not usually used for stage 2. I would talk it over with your oncologist and ask loads of questions. The hard ones!!!!!! Like what is the chemo going to do for me. I have a friend that found out 6 months of chemo was only going to improve her survival rate by 5% so she didn't think it was worth it.

If you should decide to not do chemo, make sure you "reverse" the internal cancer comfort zone you have inside of your body. Alkaline your diet!!!!

Lisa P.

vinny3

cherriann said:

thanks vinny.i apprieciate the long wind. it seems are situations are very alike. how are you doing on the chemo. would like any links to nutrion sites too.
thanks again, cherri

So far I am tolerating it pretty well but have just finished my second series yesterday. Am working today and doing ok. Some fatigue. I have some tingling in the fingers and don't tolerate cold liquids now but expect that will improve in a few more days.
Stage ll often doesn't get chemo but one has to look at the risk of recurrance. There is a higher risk of recurrance for a low lying rectal tumor (close to the anal opening) than a higher one. A poorly differentiated cell type gives a higher risk and a tumor that extends close to the margin of resection does as well. Your doctor should be able to give those details to you.
I have just started looking more at the nutritional side and others here have more experience. It definitely plays a factor. Years ago doctors would have scoffed if you told them that ulcers are caused by a bacteria but it is well proven now. The problem is trying to figure out just what supplements are helpful in the host (us) fight off the bacteria, etc. I am just reading Beating Cancer with Nutrition at this time and trying to look at some of the medical articles.
****

cherriann

scouty said:

Hi Cherri,

I was dx stage 4 in 2004 with mets to liver and left lung. Surgery was not an option for me so I did do chemo Folfox with Avastin for 8 long months (the first 6 were a cakewalk almost). But the side effects really started getting to me. I felt like the chemo was killing me. I knew I couldn't just stop chemo, I had to make huge lifestyle changes or the cancer would kill me. I found a naturopathic doctor with a PhD in Clinical Nutrition to help me and I completely changed my diet to all natural/organic foods, juiced, and took supplements. It was the right decision for me at the time but I have to tell you it was the hardest thing I have ever decided to do.

I agree with Lisa that Oxilaplatin is not usually used for stage 2. I would talk it over with your oncologist and ask loads of questions. The hard ones!!!!!! Like what is the chemo going to do for me. I have a friend that found out 6 months of chemo was only going to improve her survival rate by 5% so she didn't think it was worth it.

If you should decide to not do chemo, make sure you "reverse" the internal cancer comfort zone you have inside of your body. Alkaline your diet!!!!

Lisa P.

hi lisa,
what do you mean by alkaline your diet?

scouty

cherriann said:

hi lisa,
what do you mean by alkaline your diet?

All foods have a chemical ph balance to them. Do a search on food chemical balance. Cancer cells love an acidic environment within the body and surprise, our diets here in the US are way too acidic. Sugar, alcohol, most meats, dairy products are highly acidic foods. As are aspartame (used in diet sodas), high fructose corn syrup (the most commonly used man made sugar substitute, it is in everything!!!!!), processed foods, antibiotics, most other medicines, and table salt.

I find it amazing that sea salt is very alkaline as are most fruits and veggies. The key is to eat more alkaline foods then acidic. I test my urine several times a week to keep it in the "safe" range. I love some of my acidic foods but buffer them with the alkaline ones.

Guess what, lemons, tomatoes, and some other surprises are very alkaline to the body. Add fresh lemons to your water!!!!!

usakat

Hello Cherriann,
Our cases are different, however both of us thankfully have no mets. I have stage II/III colon cancer and will start six months (at least four) Xelox (Xeloda/Oxaliplatin) in three week cycles on Wednesday. Xeloda is pill form 5-FU so treatment should be easy to manage. Hopefully I will not suffer too many side effects...we'll see. I'll let you know how it goes.

Glad to hear you are getting better. Be well and stay positive.

Kat

cherriann

scouty said:

All foods have a chemical ph balance to them. Do a search on food chemical balance. Cancer cells love an acidic environment within the body and surprise, our diets here in the US are way too acidic. Sugar, alcohol, most meats, dairy products are highly acidic foods. As are aspartame (used in diet sodas), high fructose corn syrup (the most commonly used man made sugar substitute, it is in everything!!!!!), processed foods, antibiotics, most other medicines, and table salt.

I find it amazing that sea salt is very alkaline as are most fruits and veggies. The key is to eat more alkaline foods then acidic. I test my urine several times a week to keep it in the "safe" range. I love some of my acidic foods but buffer them with the alkaline ones.

Guess what, lemons, tomatoes, and some other surprises are very alkaline to the body. Add fresh lemons to your water!!!!!

thanks for the info!!!

KathiM

Aw, cherri, you are such a braveheart!
What does your onc recommend? And, what are the stats with/without post surgical chemo?
I never was even offered chemo post op...but, remember, always needing to be different, I had squamous cell carcinoma....so adenocarcinoma is most likely different...
About not going anywhere...that, too will come. Try not to stress too much....can you go out just a little? Sit on the patio?
I am sending my best hugs to you....
HUGS,
Kathi

fedester

cherriann said:

permanent. already did the 5fu before surgery. just want to be well. thanks bruce
cherri

hi cherri,
there is a web site for survivors that have a perm bag,
when i had my temp i would always read it is shaz's ostomy page, just google it a lot of great info from other folks.
be well
all the best
bruce

Moesimo

Cherri,

You will get through this. I remember thinking I would never get better, but I did. this is a terrible disease as we all know.

Please email me with any ostomy questions. You will get through that also. I hope you have a great ET nurse. Order the beige appliances, they are so much better than those clear ones.

Maureen

taraHK

Hi Cheriann,
I am glad your surgery is over and went fine. I understand your depressing moments re: the colostomy. It is a huge adjustment. If I can answer any questions or if you want to discuss, please feel free to email me. I promise you that it gets better. If it makes you feel any better, I want to let you know that I am very physically active (hiking, swimming, yoga), I work full-time, travel a lot (international trips -- yes, in strange bathrooms!) and wear almost everything I want. I am irrigating now, which makes some difference -- but I was/am able to do all this even when wearing a traditional 'pouch'. I agree with others that you may have to try different appliances to find what works best for you. I use a one-piece, drainable, opaque pouch, with filter, and a very soft exterior fabric (for example!). The question about chemo is a tough one. I was Stage III, so the decision was not so tough. Your oncologist should be able to give you research evidence relevant to your situation. But of course at the end of the day it is your decision. I have always leaned toward the more aggressive option. I am swayed by the fact that I have two kids, whom I want to stay alive for, even if it means I have a rough time. Also, I'm young and strong and I feel I can take a lot of punishment (!). But, this is just my perspective -- there are others, and I have deep respect for others' positions.

kangatoo

taraHK said:

Hi Cheriann,
I am glad your surgery is over and went fine. I understand your depressing moments re: the colostomy. It is a huge adjustment. If I can answer any questions or if you want to discuss, please feel free to email me. I promise you that it gets better. If it makes you feel any better, I want to let you know that I am very physically active (hiking, swimming, yoga), I work full-time, travel a lot (international trips -- yes, in strange bathrooms!) and wear almost everything I want. I am irrigating now, which makes some difference -- but I was/am able to do all this even when wearing a traditional 'pouch'. I agree with others that you may have to try different appliances to find what works best for you. I use a one-piece, drainable, opaque pouch, with filter, and a very soft exterior fabric (for example!). The question about chemo is a tough one. I was Stage III, so the decision was not so tough. Your oncologist should be able to give you research evidence relevant to your situation. But of course at the end of the day it is your decision. I have always leaned toward the more aggressive option. I am swayed by the fact that I have two kids, whom I want to stay alive for, even if it means I have a rough time. Also, I'm young and strong and I feel I can take a lot of punishment (!). But, this is just my perspective -- there are others, and I have deep respect for others' positions.

Hi Cherri. I was dx'd aug. 2003,stage 2, no nodes involved, resected, then did chemo for 6 months. My onc. and surgeon both told me that the chemo would give an advantage of 3% over the chance of re-occurance. Both suggested they highly recommend I do the chemo...which I did.I am currently 2 years 4 months NED and if asked again for a decision to do chemo I would choose the same journey again(not that I would like to do it again!)
All tha best, Ross n Jen

cardinallady

usakat said:

Hello Cherriann,
Our cases are different, however both of us thankfully have no mets. I have stage II/III colon cancer and will start six months (at least four) Xelox (Xeloda/Oxaliplatin) in three week cycles on Wednesday. Xeloda is pill form 5-FU so treatment should be easy to manage. Hopefully I will not suffer too many side effects...we'll see. I'll let you know how it goes.

Glad to hear you are getting better. Be well and stay positive.

Kat

I am new here. How is the Xeloda working for you? I had chemo/rad, then surgery, then more chemo. Feb 14th my PET/ct showed no cancer. I have been on Xeloda since April. 2 weeks on, 1 week off. My neuropathy is still bad. And you?

michelediane

Cherriann, I had an ap resection in May 03. I found the first 6 weeks after the surgery to be the most uncomfortable time. Then to salvage my summer I went camping for 4 days which was a breeze with the colostomy. I then went to Kayaking at Lake Tahoe for a week and then to Hawaii for a week. I guesse I was trying to prove to myself that I could still have fun in the sun. Well now 3 1/2 years post ap I still kayak and last week I even went on a sea doo. I also take motorcycle rides with my husband. My point is that there is not much you can't do with a colostomy. I had sqaumous cell anal cancer so I had different chemo options. I was on mito/5fu for two rounds and I had 32 rounds of radiation prior to my surgery. I went thru chemo with a diverting colostomy and I decided to make it permanent. I do agree the opaque one piece bags are the easiest for my lifestyle. Good luck, Diane