To Xeloda or not to Xeloda

[WriterGirl1969]

Hi all.
I'm giving a very real amount of consideration to choosing Xeloda as my chemo treatment. Reason #1 is that taking pills vs. getting iv drugs seems just so much less stressful to me, in spite of the potential for greater side effects. Reason #2 is that I'm the primary income provider and insurance carrier for my family, and I'm very concerned about maxing out FMLA and then losing my job if I have to take a ton of time just to get the stuff, let alone for time I may need to deal with it physically.

So, I'm putting out a feeler. If you've taken Xeloda, can you let me know the details of your experience? How does the regimen work? Is it every day for 6 months straight? Or is it X weeks on then X weeks off like others? Were consistent crappy days the norm? If so, were they worth it, and why?

Any and all info appreciated beyond words.
--Tracy

[Nik Colon]

Just what I have heard, 2 weeks on then 1 off, repeat. I know for at least those doing it with oxi (xelox) (from what I recall), not sure if it's the same if you are just on xeloda itself. I'm sure someone else will chime in with more info.

[mariane]

My dad was doing Xeloda only chemo for 6 months: 2 weeks on, 1 off as Nik wrote. At first he had zero side effects and felt very well. He said he loved chemo like the one. After about 4 months he developed hand foot syndrome: red, painful hands and feet, he complained of chest pain ( blamed Xeloda for atrial fibrillation which began during last month of his treatment but he was 74 at diagnosis. He is 5 years NED now and hand foot syndrome long gone but AF stayed. Anyway he feels well and still works.

[horizon]

Did 6 months of Xeloda and Oxi.

On Wed I would took the entire day off from work and got an Oxi infusion. That was my starting point for two weeks of Xeloda pills. Worked from home Thur + Fri and took it easy over the weekend. Monday I was back at work and the gym. After the two weeks of pills I had one week off (best week ever) and then it was time for more Oxi and pills. Repeat that for 6 months. I had mild hand/foot syndrome and several other frustrating symptoms, but nothing close to debilitating. I didn't miss any work that wasn't planned, which surprised me. Everyone reacts differently is something important to remember.

[elise]

I've done both xeloda, FOLFOX and 5FU...

Xeloda: Done usually as a 2 weeks on, 1 week off. 8 cycles. Very expensive drug if you're uninsured (mine was about $2000 per 3 week cycle). Easy to take with minimal nausea. Tiredness wasn't too bad. Diarrhea was mostly manageable. My hand and foot syndrome was NUTS. I could barely walk or touch anything by day 7 of every cycle. I had long-term neuropathy from it in the end.

FOLFOX: (I have a port): this stuff was NASTY for me. Instant issues with cold. I was outside in a t-shirt with mitts and a scarf on. My eyes would twitch from a breeze. Nerve damage set in by round 5. I have permanent neuropathy from this. Days 5-6 I was bedridden but aside from that the tiredness wasn't too bad. Nausea wasn't great for day 1-6 but controlled with meds.

5FU: much easier than FOLFOX. Tiredness for day 4-5 wasn't great. By cycle 8 or so I needed a break so my body could heal a little and get some overall energy back. Neuropathy continued but much better than FOLFOX. Nausea wasn't bad.

Both are decent options with their own ups and downs. If you can avoid the hand and foot syndrome, xeloda is nice

Elise

[Mastan]

I have done Xeloda in combination with Celebrix, that is the ADAPT Protocol the Dr. Lin uses at the Seatle Cancer Care Alliance. Xeloda is 2 weeks on 1 week off. For a month or so side effects were not too problematic. Then the hand/foot syndrome kicked in and things got nasty. A lot of skin peeling off, redness, and swelling. I ended up with an infection in one of my big toes that had to be treated with minor surgery by a podiatrist. Everyone reacts differently to the chemo poison so you may want to give it a try and see how it plays out. I am back on the infused 5-FU and the hand/foot syndrome is just a distant bad memory.

[justin case]

I have done Xeloda in combination with Celebrix, that is the ADAPT Protocol the Dr. Lin uses at the Seatle Cancer Care Alliance. Xeloda is 2 weeks on 1 week off. For a month or so side effects were not too problematic. Then the hand/foot syndrome kicked in and things got nasty. A lot of skin peeling off, redness, and swelling. I ended up with an infection in one of my big toes that had to be treated with minor surgery by a podiatrist. Everyone reacts differently to the chemo poison so you may want to give it a try and see how it plays out. I am back on the infused 5-FU and the hand/foot syndrome is just a distant bad memory.

I work on my feet, and need my hands to work a very labor intense job .I was very afraid of the hand and foot syndrome, so I stuck with 5 FU.

[AppleTree]

I just finished 5 weeks of 3000 mg a day (off on Saturday/Sundays). No problems. DR gave me hand and foot cream and to use it alot. I did. I know this was a short course compared to other people, but 5 weeks worked for me. 4 of my 5 weeks of radiation was OK too. Week 5...not such a picnic.

[WriterGirl1969]

Thank you everyone. This is wonderful, and very appreciated. I am trying to take everything into consideration, and this really helps. I really am feeling strongly that I want to at least try the Xeloda. I feel as though keeping my morale up is extremely important, and the idea of not having to contend with IV's and hours out of work and in a chair getting infused will help with that. I can be extremely anal about doing things, and feel I could keep up with the water, B6 and creams that can help alleviate the hand/foot syndrome. And if not, well we can always switch it up if needed. I will arm myself with all of this information, and again, thank you *SO* much for all of the information.

[NoFear32]

I did 8 rounds of chemo total in a 2week cycle.

My first two rounds were the standard FOLFOX via my power port. I would sit at the infusion center for 4+hours and then was sent home with the portable infusion fanny pack for another 48 hours. After 48 hours I would go back to the center and have the stuff removed. I suffered instantly and severely during these first two rounds and the theory is that I have a bad reaction to the way my body processes the 5FU intravenously. It was messing with my heart. The neuropathy and extreme sensitivity from the OXI took effect instantly as well and my dosage was reduced for the second round.

From rounds 3-8 we continued doing the OXI via IV, but I took the Xeloda pills at home. It was so much easier for me to function on Xeloda! However, towards round 8 the toxins from all the drugs had been building up in my system and even with Xeloda the ability for me to function was decreasing rapidly with each round.

I am almost 6 months done with chemo and the side effects (neuropathy, energy, etc) is getting better. Still not 100%, but I am seeing some improvement. 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!

[Nik Colon]

Thank you everyone. This is wonderful, and very appreciated. I am trying to take everything into consideration, and this really helps. I really am feeling strongly that I want to at least try the Xeloda. I feel as though keeping my morale up is extremely important, and the idea of not having to contend with IV's and hours out of work and in a chair getting infused will help with that. I can be extremely anal about doing things, and feel I could keep up with the water, B6 and creams that can help alleviate the hand/foot syndrome. And if not, well we can always switch it up if needed. I will arm myself with all of this information, and again, thank you *SO* much for all of the information.

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

[peanut_8]

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

[Lydia666]

You can be very functional on xeloda. I had hand foot syndrome, i had to have longer breaks then one week- i did 6 cycles but we had to adjust almost for all- lower the dose, 10 day breaks etc. I am only 3 weeks out now and it's much better. My nails have thinned but i am expecting full recovery.
In short , xeloda is not too bad, your lifegoes on normally but the hand foot syndrome is annoying.

[Lund5505]

I have done both folfox and xeloda alone. You will need to do the 3 hours for the premeds and oxy regardless of 5fu or xeloda.

The biggest difference on my opinion is that with the xeloda you do not need to make an additional trip to the infusion center for disconnect. I also had a lot of difficulty sleeping with the pump between the humming and the needle in my chest and getting tangled in the cords I was strung out from lack of sleep by disconnect day. I seemed to have less fatigue with the xeloda than the 5fu but to be fair my 5fu was with the oxy and the xeloda was not. I had mild hand foot syndrome from both. Not really painful just seemed like the skin on the bottom of my feet got thicker. I would try the xeloda first and switch to 5fu if needed.

[Nik Colon]

I have done both folfox and xeloda alone. You will need to do the 3 hours for the premeds and oxy regardless of 5fu or xeloda.

The biggest difference on my opinion is that with the xeloda you do not need to make an additional trip to the infusion center for disconnect. I also had a lot of difficulty sleeping with the pump between the humming and the needle in my chest and getting tangled in the cords I was strung out from lack of sleep by disconnect day. I seemed to have less fatigue with the xeloda than the 5fu but to be fair my 5fu was with the oxy and the xeloda was not. I had mild hand foot syndrome from both. Not really painful just seemed like the skin on the bottom of my feet got thicker. I would try the xeloda first and switch to 5fu if needed.

Question, what pre meds did you have that took that long?

I mentioned this b4 but, I had no noise from my pump. I have heard this, but I didn't have this issue. My pre meds b4 the pump when just 5fu only took 20 mins (steroids). Also, I had a nurse come out to disconnect me so I didn't have to go back in.

When I had folfox and folfiri, the total time was only 2 hrs