What to do...

Hi Tashina
Hi Tashina

In reading your post, I thought I would offer my opinion since you asked.

I was originally a IIb when I got started (later stage IV) and I remember vividly of not doing systemic chemo after my resection - this proved to be a mistake.

As for Xeloda and Folfox - I would go for the big guns right now and take the Folfox...what you might find out is that along with Folfox, the onc might have your husband take Xeloda in addition to the Folfox - and he might even prescribe Avastin, which cuts off blood supply to the tumors - personally I took all of them along with many types of surgeries and I would encourage you and your husband to throw all of this at it right now as a precaution.

Xeloda really just holds things at bay, keeps it stable, it does not really kill cancer cells per say - this is what you would take by itself if all other failed. Xeloda with Folfox and Avastin makes for a powerful punch against Cancer - but it is not EZ to do but nothing ever is.

6 months is the prescribed treatment plan, but the truth is the chemo plan goes by what the body can take, what the blood levels are, like the white cell count and the blood platelets, very criticial for being able to take chemo. So what I'm saying is 6-months can stretch out. It took me 10 months to take 8 cycles of Folfox before my body had enough, others can do 10-12, again all on the body as to what it can take.

So, don't get caught up in timelines...I did the Xeloda for 10 months and Avastin about 6 months. They can't give you Avastin until you are out of surgery for so many months - 3 or more I believe.

Anyway, I would not go with Xeloda by itself. You're at the early point in the battle, it's time to wage war now and win rather than wait.

I've been at this almost SIX years, so I'd rather see hubby get after it right away and decrease the time he will be fighting.

I hope this helps you...BTW you came on board as I was leaving the board for my lung surgery, so I did not get to introduce myself...it's nice to meet you, Tashina

Good luck with everything and I'll support you with whatever you decide. All the best -

-Craig

Julie 44 said:

Folfox
Hey Tashina,
I was a healthy women at the age of 44 when I was diagnosed with stage 3 cancer with several lymph nodes involved..No family history either...
I have had a colon resection and did chemo afterwards..I did a number of drugs including Folfox...I don't know anything about Xeloda so I can't help you there..I did 6 months of treatment and was NED for 7 months...At this point I was just diagnosed with 4 liver mets so here I go again... My point of telling you all of this is not to scare you but to make you aware that sometimes no matter what method you use its really not up to us or the doctor...What ever will be will be...I would do everything possible like I did last time but even when you do that it doesn't always work out...So I wouldn't make myself self to crazy about choosing which meds just do everything you can at the time and take it from there cause ya never know....Good luck... JULIE

XELODA PILLS
Hi Tashina,
I am stage IV metastatic dx 4 1/2 yrs ago.after extensive surgery they removed all the tumours
except the ones in my liver-too big.I was on folfox with avastin 12 treatments Tumours GONE!
After 10 months i had a recurrance, which was inoperable,they put me on xeloda(oral 5fu) for a year and it shrunk the tumours enough so the could resect the liver,tumours gone! 2 years no more liver mets.
Side effects; folfox- nausea ,periferal neuropathy,cramps in hand and feet.intolerence to cold.
XELODA;the calluses on the bottom of my feet peeled off i could not go bare foot-too sensitive
but my feet were like newborn baby feet
yours may be worse,they maybe better,everyone has different levels of side effects

you have a wealth of knowledge at your fingertips with this forum! ,lots of us have had the surgery,taken the drug ,experienced the side effects.
ask questions, no question is too dumb, or silly,or small.
my doctor said this was the best place for side effect and experience info.

my mom and my aunt both dx breast cancer same stage mom opted for mastectomy ,no chemo.
my aunt did lumpectomy and radiation,both cured no recurrance,one 'used a stick' the other a 'big gun' same results.1998.

you have to makethe decision based not on what is easy,but on what is best for you and your stage cancer.it would be nice if the easy way were the best way ,but it's not always the case.you have to be comfotable with your decision.And there is no law that says you can't change the game plan if its not right for you and try something else.
good luck with your decision.
GOD BLESS
Kate

Hi Tashina,my husband was
Hi Tashina,my husband was diagnosed with stage2A rectal cancer,after preoperative treatement and surgery,the pathology report down staged from stage2 to stage1.My husband is taking chemo folfox now.Whether it is controversial or not,the standard treatment from NCCN(National Comprehensive Cancer Network)still recommends folfox after surgery.My husband has a family history although it is not 100% related with colonrectal cancer,many people from his mom's family side got cancer.So we decided to do more chemo,chemo is not fun,but my husband wants to fight against this big C as much as he can.The surgeon also recommened chemo very strongly to us,he says he doens't want to see my husband again in another 2 0r 3 years,if the recurrerence is back,then it is not going to be stage2 anymore,it is going to be stage4.The surgeon also says if my husband is an old man in 70 or 80,he may not recommend because the suffering from side effects may not be worth of it for an old man,since my husband is still young,so he should take the chemo. Diane's calculation is right,it is not just 5%.Oxiplatatin(spell?) will also increase the effectiveness of 5-fu by 25%.Anyway good luck to you with everything.

TLG320 said:

Thanks everyone and a question
Thanks everyone for your feedback! We're really leaning towards the Folfox right now. I know it's not going to be a walk in the park, but we want to know that we did EVERYTHING in our power to stop this cancer now and forever.

I'll keep you all posted. We're going back to meet with our oncologist on Thursday afternoon to determine a plan of action.

Quick question about having a port: How intrusive is the infusion into your daily life? Things like taking a shower? Getting dressed? Are you literally hooked up to the chemo pack for the entire time your getting the infusion? It sounds like it's spending a few hours in the hospital and then going home with the chemo pack for 2 days-ish?

I know our doctor will go over all of this on Thursday, but I'd like to get more of an idea of what to expect. Thanks everyone!

what to do
I have a power port and the day of chemo I receive all my chemo at the treatment center and then I go home with a small infusion pump that pumps 5-FU into me for 46 more hours and then the pump is removed. The bad thing is I can't shower while the pump is attached but believe me as soon as its off I take a hot shower. It's not to bad, you get used to it after awhile.

TLG320 said:

Thanks everyone and a question
Thanks everyone for your feedback! We're really leaning towards the Folfox right now. I know it's not going to be a walk in the park, but we want to know that we did EVERYTHING in our power to stop this cancer now and forever.

I'll keep you all posted. We're going back to meet with our oncologist on Thursday afternoon to determine a plan of action.

Quick question about having a port: How intrusive is the infusion into your daily life? Things like taking a shower? Getting dressed? Are you literally hooked up to the chemo pack for the entire time your getting the infusion? It sounds like it's spending a few hours in the hospital and then going home with the chemo pack for 2 days-ish?

I know our doctor will go over all of this on Thursday, but I'd like to get more of an idea of what to expect. Thanks everyone!

Fanny Pack
Hi TLG,

My father has a power port as well as the pump. His port is just a small raised area under the skin on his chest. His pump can either be worn like a fanny pack, purse or around the neck. He is able to shower with his pack, we just hang it on a sturdy coat hanger and hang it on the outside of the shower door, this can also be done by hanging it on the shower rod. The pump just can't get wet inside the case. I just have to make sure he doesn't get tangled in the IV tubing. Best of luck to you.

Kim

You have to decide: Do you
You have to decide: Do you want to give a little chemo time now Or Maybe having to give it all later as a stage 4. I'm a stage 4 and I've had them all but due to chemo brain I can't remember which side affects went with which drug. I wish you and your family the very best, be strong and fight it together.
Cyndi

TLG320 said:

Thanks everyone and a question
Thanks everyone for your feedback! We're really leaning towards the Folfox right now. I know it's not going to be a walk in the park, but we want to know that we did EVERYTHING in our power to stop this cancer now and forever.

I'll keep you all posted. We're going back to meet with our oncologist on Thursday afternoon to determine a plan of action.

Quick question about having a port: How intrusive is the infusion into your daily life? Things like taking a shower? Getting dressed? Are you literally hooked up to the chemo pack for the entire time your getting the infusion? It sounds like it's spending a few hours in the hospital and then going home with the chemo pack for 2 days-ish?

I know our doctor will go over all of this on Thursday, but I'd like to get more of an idea of what to expect. Thanks everyone!

hooked up, taped up to chemo
hooked up, taped up to chemo pack for 2 days. Couldn't take a shower while it was on- just did a good one before infusion and of course after!

Shayenne said:

It's
Not too intrusive, I had the pump, but now they put on this new baby bottle looking thing, where it is just thrown away in your chemo yellow bucket, if you have one, so no more clicking, beeping and worrying about it breaking if you drop it!

I don't shower with it on, I'm not comfortable with that for some reason, I just wash up in the sink, and my hair is better not washing it everyday, it's said it isn't good for your hair anyway, so I put it up alot, it doesn't look greasy the next day, and it's only for 46 hours, I don't go out much or around alot people because I worry about germs more when I'm on it. I also wear button-Down shirts since the nurses find it easier to access that way, then going under a shirt, you just have to be really careful not to get the tubing caught in anything.

Sometimes I would get up and start walking away and forgetting I was even hooked up, and the tubing pulls, and I would think "Woahhh!! forgot about you!" and almost pulled it out, so be careful!

Maybe getting the emla cream would also help with needle pricks not being painful when they access you, it numbs it out, just glob it on thickly an hour before you go, and put saran wrap over it so it doesn't get on your clothes.

Good luck with it!

Hugsss!
~Donna

Tashina..........from the heart
Port is a piece of cake and by far the best route. Fanny pack is another piece of cake only this piece of cake isn't near as good as the first. My pump on my 3 days with it was taped over so that I could shower with it on and I did...only I used an extra 3 sided tape as a shield that I got at the Oncologists office...The tubing, simply pull all of it out when going to bed and roll with it. I placed the pump in between me and the wife and then just woke up, unrolled out of the tubing, and went on about my business. The tubing is pretty stout with the tape sealing it onto the skin. If he gets it on Monday about 12 noon it will run out about 1 pm on Wednesday...It will start beeping, simply hit the off button and it will shut itself down, with no problems at all, until you get to the office to have it removed. I have also been caught in the 09 Winter storm here (Ky) and couldn't get to the office. I had an RN take it out for me, simply cleanse the hands and remove, wipe with alcohol, and place a bandaid over it...done...
As for post op treatment, in my most Dr like opinion I had the very same option, to have chemo or not, and my onc also said that it would only give me another 5% increase in non reoccurence.my surgeon says 15%..Ya know a little goes an awful long way, especially in something like this, and why not opt for every opportunity you can. Ya'll have traveled through the worse fear and pain that anyone could ever imagine, the hardest emotional rollercoaster ride anyone could ever ride on, and most of all you both have prevailed, come out on top despite everything against you....When you take all that and add it to everything you will be able to now enjoy because of the life giving treatments you have been through, why not opt for the final blow to the disease gone..Kind of a coup de graw (sp) if you will. When I was piling all of the pros and cons together to make a decision then I came to the one thing that put it all into perspective for me, made my mind up without any more thought about it......My wife and kids,,,did the Folfox, end of story.....and have never looked back...........Love and Hope, Clift