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What to do...

TLG320
Posts: 168
Joined: Oct 2009

Hi all!

I hope everyone had a wonderful Thanksgiving. My husband and I met with his oncologist today to discuss the next steps in this crazy journey. My husband had surgery on Nov. 9th (right hemi-colectomy). He's a stage 2A with no negative prognostic factors (according to the pathoogist and oncologist). All 32 lymph nodes clear, no vascular or lymphatic invasion, moderately differentiated tumor. He does have a family history of colon cancer, but we've not yet gotten him tested for lynch syndrome, although we will be meeting with a geneticist soon. The oncologist said he recommends chemo - but if we chose not to do it, he'd respect that decision as well. He said that my husband already has a very good prognosis and chemo is only going to improve it by no more than 5%. I asked the oncologist what he would do, and he said he'd take Xeloda, but also said that he's not had a cancer diagnosis and doesn't know how that would affect his decision.

We are going to do chemo, but here's my question: xeloda or folfox? The oncologist said it's our decision. Xeloda is obviously more convenient as it's entirely oral. Overall, it has fewer side-effects typically than Folfox. Both treatment options will last about six months. Unfortunately, there's not much research out there directly comparing the efficacy of Xeloda and Folfox for stage 2 patients.

My husband is only 42, very healthy and has a LOT of living left to do. He wants to beat the crap out of this cancer and wants to take the most effective route doing so...

What would you all do? Any stage 2As out there that were faced with this decision? We've got a lot of thinking to do in the coming days. We have a follow-up appointment with the oncologist Thursday afternoon and would like to make a decision by then. Any input is so welcome. Thanks all!
Tashina

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

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

TLG320
Posts: 168
Joined: Oct 2009

Nice to meet you too, Craig! I'm glad you're more active on the board now. I hope your recovery is going well.

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Let's say hubby has a 70% chance of never having cancer again. 100 - 70 = 30. 5% X 30 = 15. 70 + 15 = 85%.

5% is more than just 5. :o)

I'm glad to hear hubby will have chemo and I agree with Craig!

Julie 44
Posts: 479
Joined: Oct 2008

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

KATE58's picture
KATE58
Posts: 300
Joined: Nov 2009

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

P_I_T_A's picture
P_I_T_A
Posts: 133
Joined: Oct 2009

I know there's wiser and more experienced people on this board to weigh in on this matter. I was wrestling with doing chemo or not myslef a couple of months ago just for a 5% better chance of beating this thing. I'm 40yo and was staged 3A with one lymph out of 18 positive. As others informed me, this is a fight to win and best to hit it hard and early. I started FOLFOX about a month after my resection. I'm at the onc office right now, as I'm typing, gettin round #3. Having the port has made things rather simple. So, if you decide to go the FOLFOX route, he might want to go with a port. OXI is bad little booger, but if it will knock out the monster then I can live with it. I think being 'relatively' young and in good health, aside from the cancer, helps to dimish some of the side effects. Basically, 6mo isn't alot to sacrifice in the grand scheme of things. Ultimate decision is up to you. Good luck either way!

-DJ

Fight for my love
Posts: 1530
Joined: Jun 2009

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.

nudgie's picture
nudgie
Posts: 1483
Joined: Sep 2006

with the same Stage colon cancer as your husband in 2006 and my onc dr recommended FLOFOX due to my age at that time (42). He called it an insurance policy just incase there were some microscopic cancer cells floating around inside, but before 2006, it was not industry standard to give chemo to Stage II.

I would rather be proactive then reactive with this type of disease, but it is a decision that needs some thought and discussion.

I completed 6 out of 12 treatments.

TLG320
Posts: 168
Joined: Oct 2009

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!

damama24
Posts: 175
Joined: Nov 2009

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.

geotina's picture
geotina
Posts: 2118
Joined: Oct 2009

Yes, you are hooked up to the chemo pack for 48 hours. Getting dressed is no problem. Sleeping on your back works best if you can do it. The chemo is in a fanny pack along with the pump that slowly infuses the chemo through the port. George went to work with it on and had no problems. As far as a shower, he found that to be a pain in the neck so he would just wash up, wash his hair in the sink, and forget about a shower for 1 day. Lots of people do take a shower with the fanny pack so I am sure they will weigh in. George found it easiest to wear a button down shirt for chemo infusions and wearing of the fanny pack. Also, driving was not a problem for George. Take care and good luck. Any questions just ask the board and they will respond. Tina

NBTXGIRL's picture
NBTXGIRL
Posts: 31
Joined: Aug 2009

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

coloCan
Posts: 1956
Joined: Oct 2009

I can't sleep on my back so I place the fanny pack next to my glasses so when I wake to urinate or any other reason, I take pump with me cos its near glasses which I need. Just have to make sure tubing from pump doesn;t get stuck on a doorknob or wrap around my neck.Biggest problem is tape of bandage for PICC getting on underarm hairs and hurting when I move arm.For the 2 days I'm attached to pump I won;t change my t-shirt but wash underarms with washcloth.Have to remember to take pump with me all the time(sometimes forget about it til I get up and take a few steps and it falls on floor ).....Steve

khl8
Posts: 810
Joined: Nov 2009

I did both the xeloda in combination with radiation, then surgery,then 9 5Fu treatments. I went to the store, out to eat and everything with it. I also have a port.
I used to place the pump in the bed with me and kind put my arm over it like it was one of my kids.
The other thing is the hmo nurse put a piece of tape areound the tubing closer to my chest, and then we used a safety pin to keep it secure under my clothes. So if I dropped it or walked of without it, it would tug on my clothing and not the site.

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

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!

cyndi2324's picture
cyndi2324
Posts: 72
Joined: Oct 2009

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

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

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

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

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

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