The Colon Club

Nik Colon wrote:If you are just getting 5fu, you would not be spending hours getting infused (just wanted to let you know).

Yeah, it's weird, Nik. This is what the folks at the Onc center told me, but I think they were including wait time, bloodwork, etc. They said for the infusion done on site (not the pump) to expect to be there 3-4 hours total. For the pump option, they said it would be more like 2 hours total. Both of these are without the Oxa, so for just 5-FU. They didn't discuss any pre-meds with me at all. Since the Onc pretty much discounted Xeloda out of hand, I expect we'll have more conversation soon.

NoFear32 wrote:I started working full time again about 5 months ago so I could keep my family covered under my insurance plan as well.

Good luck with your decision and stay strong!

Hi NoFear. I noted you said you went back to work full time 5 months ago. So were you still on chemo during those 5 months? Or did going back coincide with chemo wrapping up?

Thanks so much, and I'll definitely do my best to stay strong.

WriterGirl1969 wrote:

Nik Colon wrote:If you are just getting 5fu, you would not be spending hours getting infused (just wanted to let you know).

Yeah, it's weird, Nik. This is what the folks at the Onc center told me, but I think they were including wait time, bloodwork, etc. They said for the infusion done on site (not the pump) to expect to be there 3-4 hours total. For the pump option, they said it would be more like 2 hours total. Both of these are without the Oxa, so for just 5-FU. They didn't discuss any pre-meds with me at all. Since the Onc pretty much discounted Xeloda out of hand, I expect we'll have more conversation soon.

Hmmm. Yeah, the wait (usually not long where I go), blood tests, and talking to Dr do take some time, from what i recall, maybe an hr. The actual infusion time for me was what I posted.

peanut_8 wrote:Since I have RC, I had Xeloda in combination with radiation for 5 1/2 weeks, followed by a month of recovery, and finally 8 rounds of Xeloda alone. The 8 rounds consisted of 2 weeks taking pills at 12 hour intervals. Generally lined up with breakfast and dinner. Then a week off.

I made a conscious effort to drink as much water as possible. Like 2-3 liters per day. I also walked at least 6 days a week, except for the last couple of weeks, when I was to tired. It seems to me at least that it's important to drink a lot of liquid to flush the bad crap out of your system. I ended up with mild to moderate H&F about 1/2 way through treatment, and at that time, my onc reduced the dose. He said they usually expect to reduce the dose at some point. I was generous with lotion on both my feet and hands.

It's a personal issue, butt I felt that getting a port was to invasive for my taste.

Best Wishes, peanut

Thanks Peanut. This is pretty much what I was thinking too in terms of the water, activity and lotion. If I can ask a question, did you take the Xeloda before or after your meal? I'm thinking in terms of the lining up with breakfast, but I usually don't get a chance to do breakfast until about 8:30am, and eat dinner at 6, so am concerned with the exact timing.

WriterGirl1969 wrote:

peanut_8 wrote:Since I have RC, I had Xeloda in combination with radiation for 5 1/2 weeks, followed by a month of recovery, and finally 8 rounds of Xeloda alone. The 8 rounds consisted of 2 weeks taking pills at 12 hour intervals. Generally lined up with breakfast and dinner. Then a week off.

I made a conscious effort to drink as much water as possible. Like 2-3 liters per day. I also walked at least 6 days a week, except for the last couple of weeks, when I was to tired. It seems to me at least that it's important to drink a lot of liquid to flush the bad crap out of your system. I ended up with mild to moderate H&F about 1/2 way through treatment, and at that time, my onc reduced the dose. He said they usually expect to reduce the dose at some point. I was generous with lotion on both my feet and hands.

It's a personal issue, butt I felt that getting a port was to invasive for my taste.

Best Wishes, peanut

Thanks Peanut. This is pretty much what I was thinking too in terms of the water, activity and lotion. If I can ask a question, did you take the Xeloda before or after your meal? I'm thinking in terms of the lining up with breakfast, but I usually don't get a chance to do breakfast until about 8:30am, and eat dinner at 6, so am concerned with the exact timing.

I took it after the meal. I had to adjust timing for breakfast a bit, as I'm not usually hungry first thing in the morning. You need to take it within 30 minutes of eating.

peanut_8 wrote:I took it after the meal. I had to adjust timing for breakfast a bit, as I'm not usually hungry first thing in the morning. You need to take it within 30 minutes of eating.

And by within, you mean after and not before, is that right? Okay, I can handle earlier mornings / breakfast if needed.

Lund5505 wrote:I would try the xeloda first and switch to 5fu if needed.

Hi Lund. Yes, that is exactly my thought - starting with Xeloda and switching to 5-FU if needed. I won't have the Oxa (doc is keeping me off that due to a pre-existing neuropathy in both feet they don't want to make worse), and they didn't discuss pre-meds with me yet, so we'll see what they say after my upcoming meeting.
Thanks again - all of the info everyone has provided is *really* helping me with this.
Hugs and Prayers,
Tracy

WriterGirl1969 wrote:

peanut_8 wrote:I took it after the meal. I had to adjust timing for breakfast a bit, as I'm not usually hungry first thing in the morning. You need to take it within 30 minutes of eating.

And by within, you mean after and not before, is that right? Okay, I can handle earlier mornings / breakfast if needed.

Tracy, I always took it basically right after eating. I'm pretty sure the instructions are to take it within 30 minutes after eating. Also, I usually didn't eat a lot for breakfast, maybe just 1/2 a piece of toast. Sorry if I missed it, butt when are you starting? Feel free to PM with any ???s.

Best Wishes, peanut

Dear Writer Girl, I don't know how your Onc is going to manage your case as you are not going to get infusions of Oxaliplatin. On that regimen (xelox), I did 8 three week cycles. First an infusion of oxaliplatin followed with two weeks of xeloda twice a day and then one week off.

The way my company prescription drug program worked, my Onc wrote the script and the drugs were mailed to me. So there was no time lost from work for that. I worked through out the chemo. I never felt very good and fatigue was also a problem for me. There were some days when I went out to my car and napped a half hour and then finished my day. But I was fully functional. I only missed work on the days I had infusions but even though you will not have infusions, I am sure your Onc is going to want blood tests and exam prior to letting you start another cycle - if your white counts drop too much, you will have to wait a week or so to start the next cycle. So I would plan on missing 2 to 4 hours of work the first day of each cycle.

Sorry, without reading it all again, I know you said no oxi, but what about folfiri? Was that brought up?

I started back to work part time for a bit (on partial disability through LTD coverage) and then started full time a couple weeks later. This was all done after chemo had stopped. For me, working while going through chemo was too much to handle due to all the side effects I was experiencing. Thankfully my employer was incredibly understanding and made it possible for me to take the time I needed. I wish you the best!

WriterGirl1969 wrote:

NoFear32 wrote:I started working full time again about 5 months ago so I could keep my family covered under my insurance plan as well.

Good luck with your decision and stay strong!

Hi NoFear. I noted you said you went back to work full time 5 months ago. So were you still on chemo during those 5 months? Or did going back coincide with chemo wrapping up?

Thanks so much, and I'll definitely do my best to stay strong.

My DR told me to eat first and then with 30 minutes to take the pills. I am not a breakfast person. I found that 1/2 a rice cake with a little peanut butter on it was enough food so the meds wouldn't make me sick. And light enough not to turn my stomache - the entire reason I never eat until I have been up for a few hours.

I'm on round 4 of 5, for the 3 week Xeloda cycle. It's going pretty well for me, I think. They have me on a pretty high dose at 4000 mg per day, but towards the end of the cycle they have me drop it down to 3000 mg/day because of hand & foot.

Here's how it goes for me... Day 1-7 I feel good. I'm able to walk 3 miles a day, no problem. By day 8 my feet start to hurt and swell. I can still walk, but it's not as comfortable. By day 11 walking hurts and they have me drop my dose to 3000 which helps. I can walk, but not my usual 3 miles. Day 14 is the last day of the dose. By day 18 (4 days of no dose) my feet are back to normal and walking is easy again. Day 21 starts the cycle all over again.

The only other things are my feet are peeling so they look gross and I get pretty tired. I usually take a mid-afternoon hour nap and then I am good to go again. Other than that, my life is normal. I know everyone responds differently, but I find Xeloda to be much easier than I expected it to be.

peanut_8 wrote:Sorry if I missed it, butt when are you starting? Feel free to PM with any ???s.
Best Wishes, peanut

I'm 2 weeks out from surgery and healing really well, so I would imagine in about 2 weeks, since Onc said optimum start was 4 weeks out. Thank you for your offer. I'll be sure to drop you a note if I think of more questions. First I have to break it to the Onc that I'm leaning toward the Xeloda, since he poo-poo'd it. But I've gathered lots of data and I feel pretty strongly about it at this point. Thank you again - will probably talk to you soon.

Nik Colon wrote:Sorry, without reading it all again, I know you said no oxi, but what about folfiri? Was that brought up?

No, not that I recall. I try to take good notes, but the two visits have been pretty impactual so far. First one was like, Oh crap, this is what I might face. Second was pathology results, so Oh Crap, this is what I'm facing. Hard to remember all the details even with notes...

Now that I've picked up the book everyone was recommending on surviving chemo, and made details question lists in my "important stuff" book, I'm feeling a lot more prepared for a conversation. I have a "chemo training" session scheduled for this Wed, so hopefully I'll have the chance to talk to the Onc again that day.