Diagnosed in February 2010

[mgonzal]

I was diagnosed with Stage 2 rectal cancer in February. I went through 5 1/2 weeks of radiation and chemotherapy (1000 mg of Xeloda), 6 weeks recovery, then a lower anterior resection surgery with a temporary ileostomy. I had my ileostomy reversed on 7/27 after having it 7 weeks. I was discharged from the hospital today and am having no problems (knock on wood). I had a power port put in on 7/19. I am scheduled to have folfox starting on 8/16 every 2 weeks for 10 treatments. My biopsies were clear after the surgery.
I am looking for anyone to give me any insight on what I will be going through for the rest of 2010! My initial chemo and radiation did not give me any problems at all, just fatigue that I really didnt realize until my treatments stopped. My onc doctor doesnt think I will have any problems at all, but I began to worry some after reading some of the posts about Folfox. I had my port flushed once so far and I was surprised at how much it hurt to have it accessed through the skin, I guess that shows my lack of knowledge. I also chalked it up to my nerves being shot from the recent surgeries.

[Phuong]

Sorry you had to join, but welcome to the board! When you're having your port accessed, ask for the cold spray. The nurses don't automatically use it and you sometimes have to ask for it, but it helped me a great deal. It still hurts a bit, but it's so much easier. Also, take a deep breath right before they insert the needle. The biggest side effect for me while I was on Folfox was the cold neuropathy. I made good use of my beanie hat, scarves and socks. I tended to forget most when I was reaching into the fridge. I recommend tying a pair of gloves on the fridge door as a reminder to put them on BEFORE you pick something cold up. We're here to go through our journeys together. This is a great place to share your thoughts, fears, triumphs and everything in between. Stay strong!

[RayGirl]

I'm currently on round five and looking forward to returning my pump in the morning. Xeloda and radiation were pretty easy for me. My center prescribed numbing creme that I apply 30 minutes in advance to the port area. Be liberal with it and you can either cover with saren wrap or get the clear square tape like bandaids to cover the area and protect your clothing.

Everybody experiences different side effects. I don't have bad neuropathy of the hands yet, only seems to be bad in the morning when if I wash my hands with cold water before the hot water makes it to the faucet. However drinking anything cool feels like razors going down. I did have pretty bad nausea for first three rounds, then I bucked up and demanded a better anti-nausea medicine. Due to scary allergic reaction to one in the hospital (which is why it took three rounds to asks for something else), my doc and I agreed to skip a bunch that listed similar side effects and went straight for Emmend. And it has been a blessing. I can eat again and take (hot) fluids a lot easier. So definitely speak up about any of the side effects to your doc and the board. Several people are very knowledgable and might be able to point you to the right quesiton to ask your doc.

Here's how my days go:
Day 1: chilling in chemo room for 3-5 hours, have to start drinking warm drinks
Day 2: feel pretty good, but have to remind myself not to overdue or I'm completely wiped out by evening
Day 3: return the pump and slide into puddle of mush a few hours later
Day 4: nap a lot
Day 5: pretty much back to 70% by mid-morning.
Day 6: still at 70%
Day 7: feel like I'm about 90-95% myself and I can drink cool things again!

Good luck! CR Guy's blog about FOLFOX is very lighthearted and informative about his journey through FOLFOX. It's long but well worth the read.

[SkiFletch]

I had a very similar response to raygirl's when it comes to my side effects. I just wanted tto mention to ask for lidocaine cream for the port needle. You put it on 1.5-2 hours before they stick you and it completely numbs it, can't feel a thing. LOOOOOVE that stuff

[mgonzal]

My regime is to get started on a Monday afternoon, bring home my "little" friend for two days and get unhooked on Wednesday afternoon. I plan on working while all of this is done, so I am beginning to worry about the fatigue and naseousness. I have my pre treatment meeting on 8/9, does the onc doctor typically give out prescriptions for everything then or wait until the problem arises? I will be getting treatment an hour away from my house, so it sounds like that may complicate things.

[RayGirl]

My onc had the anti-nausea medicine prescription for me but I did have to ask for the lidocaine cream. Some centers give you something on location, mine prefers to use the cream. If they do order the cream have your pharmacist check with your insurance about the co-pay. Mine had the same cost for one tube or the box of five tubes. So my pharmacist called the doc and had him change my quantity to the box with no refills, I should have enough for all the rounds.

I use to go Wed for infusion so that my worst days fall over the weekend. Unfortunately this round was delayed to Thursday.

Good luck!