Xelox experience...any insights?

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LabLover
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Xelox experience...any insights?

Postby LabLover » Mon Nov 18, 2013 2:50 pm

I start xelox on Friday. Oxi every 3 weeks and xeloda 2weeks on/1week off. I'm not too worried about the xeloda. I tolerated it very well during chemo/radiation. No side effects. It's the oxi I'm worried about. My infusions are Friday. How can I anticipate feeling over the weekend? Working on Mondays after infusion, possible? I'm scheduled for 6 infusions.

orcasres
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Re: Xelox experience...any insights?

Postby orcasres » Mon Nov 18, 2013 2:57 pm

I had Folfox. My reaction to Oxi was immediate after the infusion. I could not tolerate cold; it was a shock that after the first infusion my granite counters were too cold to touch for a day or so (it was winter). I also had some issues with swallowing immediately. It took the third treatment before I noticed any neuropathy symptoms and those did extend past the first couple of days after treatment. Everyone is so different, though, so just treat this as one data point. I did have to stop Oxi after treatment 8 because of the neuropathy.

Lois
63 yo F
Colon resection Sept. 2010
pT3N0M0 Stage 2A
Medullary Tumor 6.5cm long
Lymphovascular invasion
Lynch negative
12 FOLFOX 11/2010 to 5/2011 8 w/Oxi
NED so far

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chemo sabe
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Re: Xelox experience...any insights?

Postby chemo sabe » Mon Nov 18, 2013 3:34 pm

I did 8 rounds of Xelox. I went to work every day except for infusion day. Infusion took most of the day - start with going to the oncology place, waiting to get blood drawn, waiting for results, waiting to see my Onc, do an exam and have him decide about chemo and the dose, go into the infusion area, wait for my Oxi to be mixed, and then begin the infusion process which actually begins with steroids and anti nausea stuff. Of course the Oxi is dripped in slowly.

If you do not have a port, I suggest you get one. Honestly, I did not feel good for the entire 6 months of treatment. Not just the Oxaliplatin caused issues although I still have neuropathy in my feet and I completed my 8 rounds of Xelox over a year ago. Fatigue was a major issue for me. I lost 3 toenails. I stopped my final week of xeloda on week early because I was running out of skin on my hands. besides the Neuropathy, the oxi caused me great pain in my feet and there were times I could barely walk if I was on uneven ground. But even sidewalk and pavement hurt to some degree. I had no ill effects from xeloda during my pre-surgery radiation either. But that changed during the 8 rounds of Xelox

We are all different and your experience may be completely different than mine. I hope you have good luck.
64 year old male
Diagnosed Stage 3 Rectal Cancer - T3N1M0 - Oct 2011
28 radiation treatments with xeloda
Colon resection with ileostomy Feb 2012
8 Rounds of Xelox completed Sept 2012
Ileostomy reversal surgery Oct 2012
Incisional Hernia Repair Nov 2013

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kellywin
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Location: Northern CA

Re: Xelox experience...any insights?

Postby kellywin » Mon Nov 18, 2013 6:02 pm

I finished my rounds in August, I ended up doing 5 of the 6 I was scheduled to do. If you can tolerate the decadron (steroid) you might feel better. The first round, the steroids made me nuts, I felt like I was going to jump out of my skin. But, I never really felt awful. Because of the jumpiness,my Oncologist cut the decadron in half for the remainder. The big difference was that I felt like crap immediately, about 20 minutes before I was finished with my infusion. I drove myself, but there were times that I shouldn't have. But each infusion was different, sometimes I didn't feel too bad, other times I felt like crap for a few days. I started out taking Wed-Fri off (Wednesday infusion), then back on Monday. Which worked fine for the first couple, but after that, I still really didn't feel good on Monday. It seems like everyone tolerates it differently, so my best advice is to take it as it comes and just see. After the first couple, my boss was pretty good about it and just told me to take off from the infusion day through the following Tuesday. That shedule worked really good for me, it took off a lot of stress I had about worrying if I would feel good day to day. Knowing I had that time, if I felt ok, great, but if I didn't, just knowing I didn't have to get up and go to work was a relief.

I did the infusions in the arm, no port. If you have a port, great, it will make it easier. I didn't want one for a number of reasons, only being scheduled for the 6 was ok, if I had to do more, I'd have gone with the port. In the arm can be doable, but it's not always a walk in the park. Keep your arm warm with a heating pad or heated blanket (I ended up getting some of those packet handwarmers you can get at the sporting goods store, they worked great, I could wrap them in a towel around my arm). The first 2, no problem, 3, 4 & 5 were increasingly crappy, but doable.
Kelly, mom 14 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only

LabLover
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Re: Xelox experience...any insights?

Postby LabLover » Mon Nov 18, 2013 6:21 pm

I did get a port. So hopefully while only 6 infusions it will help a little.

Coppercent
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Re: Xelox experience...any insights?

Postby Coppercent » Mon Nov 18, 2013 7:26 pm

Just remember everyone is different. I started FOLFOX and after a few treatments ended up in ICU for a week. After several specialists and scans they found that a kidney stone was blocking a kidney and since it was not emptying right I had a bad infection. I also had another infection. The day I went in the ER, the doctor told my son that he wasn't sure I would make it out. Then after the ID doc loaded me with daily antibiotics through my port for a week I was back to normal. Grateful for my port since it allowed me to take home my IV meds in syringes. So after two more weeks of antibiotics I was back to normal. We switched the remaining treatments to XELOX because for me my body liked Xeloda better than the 5fu. Except for the week in ICU I worked every day. I went in early on infusion day and did bloodwork. Then left with chemo bag while on FOLFOX and went back to work. I had to work. Not working wasn't an option. But when I look back I think work made it all easier. Just do all of the preventative stuff. Udder cream was my friend. On the advice of my oncologist I started using it before treatment started and I didn't have it too bad.
07/15/11 Stage III Rectal, 08/11 - 09/11 Chemo/rad 11/11 LAR - Whole rectum gone, ostomy, hysterectomy
01/12 Port placed, 01/12 thru 06/12 Folfox, Xelox 10/03/12 Reversal, Clear scan
And then the story continues.
Currently, remission round two!

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GreenMonkey
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Re: Xelox experience...any insights?

Postby GreenMonkey » Mon Nov 18, 2013 7:42 pm

Hi Lablover! so glad you asked.

I'm also doing Xelox - same schedule. One oxaliplatin infusion, two weeks xeloda, one week off. I'm scheduled for 6 rounds but I'm shooting for 8 (local onco says 6, sloan recommends 8, and Johns Hopkins says 12). I have no port. I don't want one but my arm is killing me. Heat does help. I also got the little heating/hand warming things. Meeting my oncologist tomorrow to discuss it further.

I get my infusions on a monday. I'm shot for the rest of the week. The steroids make me nuts. I thought I was having a heart attack. Was up til 2:30 am after my last infusion (round 2). the worst part for me is the cold air. can't go outside without pain. even my eyes hurt, and it hurts to cry (so stop crying).

what is your diagnosis?
RC - T3NXMX depth of invasion 3mm - diagnosed 5/26/13 age 53
High Dose, Internal Radiation at Johns Hopkins resulted in a PCR
LAR 9/10/13 - 0-26 nodes. CEA 1.9 post surgery
XELOX started 10/21/13(8 rounds)
11/14 NED
greenmonkeytales.blogspot.com

LabLover
Posts: 65
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Re: Xelox experience...any insights?

Postby LabLover » Mon Nov 18, 2013 7:57 pm

GreenMonkey wrote:Hi Lablover! so glad you asked.

I'm also doing Xelox - same schedule. One oxaliplatin infusion, two weeks xeloda, one week off. I'm scheduled for 6 rounds but I'm shooting for 8 (local onco says 6, sloan recommends 8, and Johns Hopkins says 12). I have no port. I don't want one but my arm is killing me. Heat does help. I also got the little heating/hand warming things. Meeting my oncologist tomorrow to discuss it further.

I get my infusions on a monday. I'm shot for the rest of the week. The steroids make me nuts. I thought I was having a heart attack. Was up til 2:30 am after my last infusion (round 2). the worst part for me is the cold air. can't go outside without pain. even my eyes hurt, and it hurts to cry (so stop crying).

what is your diagnosis?

Well, initially based on ct/MRI it was stage 3 rectal cancer with possibility of 3 localized lymph nodes. They looked "plump", but nothing confirmed- no PET. Had a complete pathological response to chemo/radiation. So right now I'm T0N0M0 :D

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O Stoma Mia
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Location: On vacation. Off-line for now.

Re: Xelox experience...any insights?

Postby O Stoma Mia » Mon Nov 18, 2013 7:58 pm

LabLover wrote:I start xelox on Friday. Oxi every 3 weeks and xeloda 2weeks on/1week off. I'm not too worried about the xeloda. I tolerated it very well during chemo/radiation. No side effects. It's the oxi I'm worried about. My infusions are Friday. How can I anticipate feeling over the weekend? Working on Mondays after infusion, possible? I'm scheduled for 6 infusions.


Hi LabLover - A couple of comments:

  • Xeloda - If I'm not mistaken, the dose of Xeloda on XELOX is twice the level of dose of Xeloda for the earlier chemo/rad segment. During radiation, Xeloda is used only at a low dose just to sensitize the cancer cells to the radiation, but during the later XELOX regimen you run at full-strength Xeloda so that the Xeloda itself can kill the cancer cells. You might notice a difference in intensity of Xeloda side effects now, particularly in the area of the Hand-Foot Syndrome.
    .
  • Oxaliplatin - The infusion of Oxaliplatin at Cycle 1 is usually done at a slow rate to allow the patient to be monitored for anaphylactic shock and allergic reaction the first time around. From Cycle 2 onward, however, the Oxaliplatin infusion is usually done at full rate if the patient tolerated the drug well during Cycle 1. Thus, starting with Cycle 2 you may experience greater and more immediate Oxaliplatin side effects than you experienced in Cycle 1

Since your infusions are on Fridays, you should be sure to get emergency contact information valid for staff on the week-ends in case you have problems that need attention on Saturday or Sunday. If I were you, I would try to re-schedule the infusions for Mondays rather than Fridays

______________________________________________________
XEL-OX

XEL = Xeloda (pill)
Xeloda side effects
https://portal.nursing.iupui.edu/index.php?seq=_002_005_001_070#5
http://www.drugs.com/sfx/xeloda-side-effects.html
http://chemocare.com/chemotherapy/drug-info/Xeloda.aspx

OX = Oxaliplatin
Oxaliplatin side effects
https://portal.nursing.iupui.edu/index.php?seq=_002_005_001_410#5
http://www.drugs.com/sfx/oxaliplatin-side-effects.html
http://chemocare.com/chemotherapy/drug-info/Oxaliplatin.aspx
Last edited by O Stoma Mia on Mon Mar 02, 2015 5:12 am, edited 1 time in total.

LabLover
Posts: 65
Joined: Tue Sep 24, 2013 7:50 pm

Re: Xelox experience...any insights?

Postby LabLover » Mon Nov 18, 2013 8:44 pm

O Stoma Mia wrote:
LabLover wrote:I start xelox on Friday. Oxi every 3 weeks and xeloda 2weeks on/1week off. I'm not too worried about the xeloda. I tolerated it very well during chemo/radiation. No side effects. It's the oxi I'm worried about. My infusions are Friday. How can I anticipate feeling over the weekend? Working on Mondays after infusion, possible? I'm scheduled for 6 infusions.


Hi LabLover - A couple of comments:

  • Xeloda - If I'm not mistaken, the dose of Xeloda on XELOX is twice the level of dose of Xeloda for the earlier chemo/rad segment. During radiation, Xeloda is used only at a low dose just to sensitize the cancer cells to the radiation, but during the later XELOX regimen you run at full-strength Xeloda so that the Xeloda itself can kill the cancer cells. You might notice a difference in intensity of Xeloda side effects now, particularly in the area of the Hand-Foot Syndrome.
    .
  • Oxaliplatin - The infusion of Oxaliplatin at Cycle 1 is usually done at a slow rate to allow the patient to be monitored for anaphylactic shock and allergic reaction the first time around. From Cycle 2 onward, however, the Oxaliplatin infusion is usually done at full rate if the patient tolerated the drug well during Cycle 1. Thus, starting with Cycle 2 you may experience greater and more immediate Oxaliplatin side effects than you experienced in Cycle 1

Since your infusions are on Fridays, you should be sure to get emergency contact information valid for staff on the week-ends in case you have problems that need attention on Saturday or Sunday. If I were you, I would try to re-schedule the infusions for Mondays rather than Fridays

______________________________________________________
XEL-OX

XEL = Xeloda (pill)
Xeloda side effects
http://cancerinfo.cancer.iu.edu/cancerp ... bine.php#5
http://www.drugs.com/sfx/xeloda-side-effects.html
http://chemocare.com/chemotherapy/drug-info/Xeloda.aspx

OX = Oxaliplatin
Oxaliplatin side effects
http://cancerinfo.cancer.iu.edu/cancerp ... atin.php#5
http://www.drugs.com/sfx/oxaliplatin-side-effects.html
http://chemocare.com/chemotherapy/drug- ... latin.aspx

Thanks so much for all the information! I appreciate it.

I took 4000mg of xeloda during radiation. I thought the pharmacist said I would receive a similar dose for this go around. I guess I will find out Friday.

My oncologist suggested Fridays. So I could recuperate over the weekend and maybe work Mondays. I will ensure I have all contact information. In my limited experience, I think the facility I'm using is pretty good about after hours contact.

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horizon
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Re: Xelox experience...any insights?

Postby horizon » Tue Nov 19, 2013 9:13 am

I did that for six months. I took off from work the day of the infusion (Wed). On Thur and Fri I worked from home. On Monday I was back at work and back to working out at the gym. It surprised me that I was able to keep this up the whole six months. Don't get me wrong, chemo sucked. However, I was expecting to be bedridden near the end of the treatment.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 13 years NED). Is this real life?

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GreenMonkey
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Re: Xelox experience...any insights?

Postby GreenMonkey » Tue Nov 19, 2013 9:49 am

Lablover, sounds like we are on a similar ride. T3 rectal tumor with question of lymph node involvement and received a complete pathologic response. And we both have been given the same clean up chemo. That actually makes me feel better about only doing 6 rounds. My local oncologist said 6, Sloan recommends 8 and Johns Hopkins, where I am had radiation and surgery, says 12.

As everyone says, we all react differently to chemo. The cold sensitivity in my hands is still pretty bad and my infusion was on the 11th.

Glad I have a chemo buddy! Hope you do well.

Shannon (aka Bernese Mountain Dog lover)
RC - T3NXMX depth of invasion 3mm - diagnosed 5/26/13 age 53
High Dose, Internal Radiation at Johns Hopkins resulted in a PCR
LAR 9/10/13 - 0-26 nodes. CEA 1.9 post surgery
XELOX started 10/21/13(8 rounds)
11/14 NED
greenmonkeytales.blogspot.com

LabLover
Posts: 65
Joined: Tue Sep 24, 2013 7:50 pm

Re: Xelox experience...any insights?

Postby LabLover » Tue Nov 19, 2013 10:49 am

GreenMonkey wrote:Lablover, sounds like we are on a similar ride. T3 rectal tumor with question of lymph node involvement and received a complete pathologic response. And we both have been given the same clean up chemo. That actually makes me feel better about only doing 6 rounds. My local oncologist said 6, Sloan recommends 8 and Johns Hopkins, where I am had radiation and surgery, says 12.

As everyone says, we all react differently to chemo. The cold sensitivity in my hands is still pretty bad and my infusion was on the 11th.

Glad I have a chemo buddy! Hope you do well.

Shannon (aka Bernese Mountain Dog lover)

Thanks Shannon! I'm at Duke, oncologist recommend 6 infusions. I'm grateful that's it's 6; I would have done as many as she said I needed to; but 6 seems manageable. :D


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