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Xeloda - pain possibly from Xeloda?

shrevebud's picture
shrevebud
Posts: 106
Joined: Aug 2009

Hello All:

I'm on night 6 of my first week of Xeloda (2000mg 2 X day). Today, especially this evening, I have had a bad stomach ache, like a burning pain in the pit of my stomach. Not having any nausea - I've been really lucky - throughout all the different chemotherapies I've been on, I never had a lot of nausea, just sometimes. I ate a full dinner tonight and took my nightly dose of Xeloda. I feel like I need to go out and get some Maalox and take 3-4 tablespoons of it and see it that will calm this pain down. I have three more pills to take tonight for another condition I have and am dreading putting more pills in my gut. This pain has got to be from the Xeloda. Any ideas on this from anyone? Also, today at work (I work in a medium-size hospital system), we had a big general staff meeeting and after the meeting the pharmacist from the cancer treatment center stopped me in the hall and asked how I was doing etc., said that he hadn't seen me around lately. I told him that was because I'm on Xeloda. He said, "you need to be taking Vitamin B6 everyday and even on your off week." Well, we were going in different directions and there were a lot of people around so I didn't get to ask him anymore about it. Neither my oncologist or his nurse mentioned anything about taking Vitamin B6 and I don't recall seeing any information on here about it. It's not that I have anything against taking vitamins, but with all the pills I take on a daily basis now, I don't want to take another pill unless I really need it. Until I can get around to the oncology clinic tomorrow or Friday and ask either the pharmacist or the nurse about the Vitamin B6 I thought I would ask you all your thoughts on this. Mainly right now, I wish this gut pain would ease up. Hope everyone has a good evening/night. Take care. Roy

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

Hey Roy

On my way to bed and just happened to refresh the page and saw you here.

Yes, it's the Xeloda - I think I may have told you that it was hard on the guts, especially as the time passes, the toxicity builds up and even when you eat, you still feel real nauseous. Try to keep some crackers or bread down in your stomach to soak it up.

Phenegran or Kytril are good nausea meds that will help you.

B6 I've heard is for neuropathy so I don't of any other way that it helps other than that.

And you're right, it feels like a burning and it is, but it always made me faul nauseous with it...the burning was bad...I took the meds and sometimes had a small amount of milk to coat my stomach...then just go to bed.

Hang in there - your dosage can be altered if your onc is willing to do that. I started on 4000 mgs a day 14/7 but we switched down to 3000 with a 7/7 cycle. What I mean by that is days on and then days off with the slashes. Each pill I took was 500 mgs. So I was 4 pill x 2 early on....then 3 pills x 2 at the end.

-Craig

shrevebud's picture
shrevebud
Posts: 106
Joined: Aug 2009

Thanks Craig for replying to me. You're just great. Sorry it has taken me a few days to get back on here. Have been really tired and have slept a lot this weekend. I hope I can make it through work this week. I bought some generic Maalox to take during the day or whenever else I have gut pain, like this afternoon. I saw my doc's nurse in the hallway Friday and told her what the pharmacist said about the Vitamin B6 - she said that wasn't a definite and that my doc was off that day but she would ask him this coming week. Said he might not think I need that and I told her since I am taking so many pills that was fine if I didn't really need to take another one too. Well I am going to run now but wanted to reply to you and say thanks. I see you have another post out there so I will have to ready that. Take care. Roy

PamPam2's picture
PamPam2
Posts: 376
Joined: Jan 2009

Hi Roy
I had similar pain. They tried several meds, the one that worked for me was nexium. Hope you get some relief soon.
Pam

AceSFO's picture
AceSFO
Posts: 230
Joined: Sep 2009

Hi, Roy,

My partner is doing Xelira (Xeloda, Irinotecan and Avastin). He does the Xeloda everyday and on Friday had his second infusion of Irinotecan + Avastin. Saturday he started getting wicked stomach cramps that have him doubled over in pain today. It sounds like the same thing you're dealing with. He had done Xeloda before in his first round of chemo two years ago, and tolerated it really well - nothing like this. He called the on-call oncologist today, but the dr. had never heard of anything like this. Tomorrow we'll talk with his regular oncologist and see what she suggests. If she comes up with any good ideas, I'll let you know.

davidh03
Posts: 9
Joined: Sep 2009

Hi AceSFO -- How come you're using Xeloda with that combo instead of the regular 5FU? Is it more effective? Can I ask what kind of cancer you are battling? Thanks, David

AceSFO's picture
AceSFO
Posts: 230
Joined: Sep 2009

Hi, David,
My partner has stage 4 colon cancer with mets to the bone (sacrum). The Xeloda is essentially the oral form of 5FU and is much easier for most people (or so I'm told). This is his second round of chemo with Xeloda both times - the first time they paired it with Oxalyplatin (Xelox for short). That time he did just fine with it, and it's looking like this recent abdominal pain might not be from the chemo afterall. He's in the hospital now (I'm typing this while he's off getting x-rayed). How about you? What kind are you dealing with?
Ace

davidh03
Posts: 9
Joined: Sep 2009

Hey Ace,

I'm so sorry to hear about your partner. Does he have neuropathy with the Oxaly? Is he on Irinotecan with the Xeloda now? How long ago was he diagnosed?

My mom has stage 4 colon cancer that spread to the lungs. Over the past 2 years she's had surgeries on her colon and lungs to remove the tumors. She did chemo as well. Most recently after all of the cancer was removed and scans turned up clean we decided to do a clinical trial vaccine called PANVAC. It didn't work. There's now a lot of new activity in her lungs, colon and even kidney. So we just started chemo again to hopefully get rid of it. We're going back on Irinotecan/5FU/Avastin.

Did your partner have a bad reaction with the 5FU treatments that were given intravenously?

AceSFO's picture
AceSFO
Posts: 230
Joined: Sep 2009

Hi, David,
He did the Oxalyplatin in his first round of chemo nearly 2 years ago and yes, he had terrible neuropathy. He thought it would never go away, but the good news is that it did - it just took a very long time to get back to normal, so tell her to be patient, it won't be forever. We have neoprene gloves for kayaking and we kept a pair of those next to the fridge because just reaching into the fridge with bare hands was excruciatingly painful. This time around he's just doing Xeloda, Irinotecan and Avastin. He never did 5FU - just the oral version, Xeloda. Everything but the Xeloda was given as an infusion. He did have trouble with the Oxalyplatin infusion. It was fine at first, but started burning his veins and got really painful. The solution was to insert a port under the skin of his chest and administer the drug that way which made a huge difference.

I'm sorry it's been so hard for your Mom. We just did a round of cyber knife "surgery" not actually surgery, but laser-precise radiation. It's fairly new (6 or 7 years) and not available everywhere, but might be worth looking into. It's as painful and difficult as getting an x-ray. 3 consecutive days, one hour each time, and in those three days they were able to give as much radiation as they traditionally administer in 6 weeks. Pretty amazing. Ask about it - they also call it radio surgery in some places. I'll add you as a friend on here so we can communicate that way also - it gets hard to follow all these threads, and remember which ones you've posted to.

Mike49's picture
Mike49
Posts: 269
Joined: Nov 2008

I had a similar early experience with Xeloda, It felt like my stomach was hurting right at the diaphram and I had bad heartburn even though I take Prilosec daily, still the acid was bad.

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

for what it's worth I too had bad stomach pain on xeloda....like Mike mine was often quite high in the middle like heartburn ....sometimes lower down...I tried nexium and losec but I really didn't think they helped.

I thought the B6 was primarily for mucous memebranes so it could help you with mouth soreness...good luck

mags

AceSFO's picture
AceSFO
Posts: 230
Joined: Sep 2009

Hey Roy,

The oncologist is suggesting Lomotil for my partner. I'll let you know if it works. Hope you're feeling better than he is...
more soon,
A

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

Roy i know this sounds really nuttie but sometimes when my xeloda pain was bad I would sleep flat on stomach face down...I know it doesn't make any sense but sometimes it worked

toss turn toss turn....then sometimes I would just lie on my back and NOT move ..I mean really not move and just pray the pain would get get better...basically meditation I guess

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

My husband is going to start Xeloda 5 pills twice a day next month. They told him that he needs to take vitamin B6 100mm everyday even on the days he is off for the burning hands and feet. They said that they can adjust the dose if they need to. Maybe you can ask if they can adjust your dose. Do check on the B6 because they told us that was important. Good luck. Paula

shrevebud's picture
shrevebud
Posts: 106
Joined: Aug 2009

Hello All:

Thanks everyone for your replies and the input. I only have a couple of more days left in this cycle and then will get to rest. I need to go around to the clinic this week and make my appointment to see my doc on my off week. I'll tell him about the pain and ask him about the Vitamin B6. BTW, I have Lomotil from when I had colitis so bad - they used to just give me bottles of 100 of it so I've always had it on hand - had not thought about taking it for the pain - it might help as it does calm the gi system down. Thanks for mentioning that. I also have some Protonix from when I was on 5FU etc - used to have reflux or indigestion really bad - after I got off those medicines it went away. Hope everyone and their spouses/partners, etc. are getting along better today. Talk with you all later. Have a good evening. Roy

tabur's picture
tabur
Posts: 71
Joined: Jul 2009

my wife actually feels better while taking Xeloda.

Pam has Stage IV with mets to the liver. This past spring, she handled Folfox 6 w/Avastin very well but unfortunately, the Avastin elevated the protein count in her urine and she had to stop treatment. The tumors started growing again as soon as the treatment was stopped.

6 weeks ago her new regiment was to be Irinotecan (4 weeks on and 2 off) and Xeloda (14 days on with 7 off). During her first Xeloda cycle she started getting real bad stomach cramps the day she came off the Xeloda. The cramps continued for all 7 days and disappeared the day she went back on. By the way, her dose is 1000mg am and 1000mg pm.

We had planned a 10 day camping trip during her Irinotecan break and she feared coming off the Xeloda. We called her onc and he said to stay on the Xeloda if she feels better with it and he called in a new prescription so we would have plenty on hand for vacation.

She has now been on 2000mg of Xeloda daily and feels great.

Today, she had her first Irinotecan treatment for cycle 2 and all her blood counts are excellent!

Oh, one more thing, we had a great camping trip! It was nice to get away alone together.

Al & Pam

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