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Xelox nausea ..from Xeloda or Oxaliplatin?

k1
Posts: 220
Joined: Dec 2009

First oxaliplatin infusion on Friday, then started Xeloda the same night at home. This is my Xelox regimen since I could not get the Folfox as scheduled due to drug shortages.

The nausea is pretty bad, despite the anti-nausea medicines. Which drug is most likely to be causing it, the Xeloda or the oxaliplatin? Just wondering since I have to take the Xeloda for two weeks before my off week. I'm taking the 500 mg Xeloda, seven pills per day.

This is day 3 of Xeloda and just wondering if the nausea will be this bad the whole time or if part of it is being caused by the oxaliplatian I had Friday and might ease this week.

Thanks for insights.

K1

karen40's picture
karen40
Posts: 211
Joined: Aug 2011

Hey K1,
For me, it's the oxaliplatin. I'm usually nauseated for about 3-5 days after the infusion. The nausea wasn't bad for me until my last two infusions. (my fourth and fifth infusion)Remember that everyone is different and that with each infusion there will be a cumulative effect. So far,I haven't found anything that has worked for my nausea. The next time around, I'm going to take the anti-nausea medicine before my infusion and continually take it for at least 3 days. I hear this works. I really don't like the idea of taking unnecessary medicine but the nausea can be bad, so I'll be giving it a try. I don't think any of my side effects come from the xeloda. Xeloda is my friend. Oxaliplatin, on the other hand is both my friend and foe.
Stay Strong,
Karen

Kimo Sabe's picture
Kimo Sabe
Posts: 64
Joined: Aug 2011

I am taking the same regime, and for me I believe it is Xeloda. As above, everyone is different.

I tried many strategies to modify this reaction.  I have taken all the anti-nausea medications and probably Zofran is the most effective. However it made me tired and sometimes I experienced constipation from the Zofran. Sometimes I got up at three or four in the morning and took the medication hoping that the effects would be decreased later in the day when I was working. That helps a little. I also found that you don't have to take the medicine exactly 12 hours apart. It has a very short half life. The pharmacist told me that really the only real rule is not to take two doses within an eight hour period. 

It happened that I have been taking folate as well as B6 and B12 for many years for an elevated homocysteine level. In the course of my research I found conflict in information about folic acid both before and after cancer. I asked my oncologist and she said just keep taking it.  Later, I read a post here where someone discussed folic acid and side effects from Xeloda. They improved by stopping folic acid and avoiding folate rich foods such as breakfast cereal.

I stopped all folic acid about a week ago, and this last week has been my best week in a long time. I still have some nausea but not anywhere near what I experienced before.  I will be forever grateful to the person  who posted that and I wish I could remember his or her name. .  Oxaliplatin has its  definite issues also. That's another story. I am about to start my fifth round of treatment and I do not have a port. If I were to do it again I would give more serious thought to a port.

keystone's picture
keystone
Posts: 134
Joined: Dec 2010

I remember responding to your post. It was my husband that was ready to ditch the Xeloda until we pulled the Folic Acid. He was so sick aftert only 2 weeks. This is the ONLY piece of useful information I have to offer so I am so happy to hear it worked for you. Please keep passing on this info cause I really hate to see anyone suffer that doesn't have to. Stephanie

Kimo Sabe's picture
Kimo Sabe
Posts: 64
Joined: Aug 2011

Well thank you again for the information. I find the little tidbits that I gather here to be enormously helpful. Emend was added to my regime before my last Oxaliplatin infusion. That gave another boost to  reducing  the nausea. I am much relieved to be almost clear of that.

Chemo brain and fatigue still go on but they are not as disabling as the nausea.

Norm

karen40's picture
karen40
Posts: 211
Joined: Aug 2011

I want to start out by claiming "chemo brain". When I stated that: "I don't think any of my side effects come from the xeloda", I forgot that I had hand-and-foot syndrome. This is definitely a side effect of xeloda. I don't know how I forgot that. I typed the post with my sore,red pealing palms. The same palms that I carry around with me all day long. I don't know. I really don't know. lol!!!
Sorry,
Karen

P.S. I still firmly believe that the oxaliplatin is the cause of my nausea and once again, everyone is different.

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

and lasted one day. The nausea was so bad that my Oncologist took me off of it immediately.

I also had trouble with 5FU, but eventually got that under control with meds.

Don't let my story scare you though, we just decided that my radiation treatments did not really need the Xeloda, so it was not worth getting the meds right to control it (plus, xeloda with radiation is a daily treatment for six weeks).

pascall5
Posts: 25
Joined: Aug 2011

Hi K1, I too started my first infusion of Oxaliplatin on Friday and Xeloda. Today is day 4 of Xeloda and I'm very nauseated. Took Zofran this morning, but not doing so well. I read Kimo Sabe's reply about folate. I am eating all the things folate rich; beans, whole wheat pasta, etc. and he said he found these to exacerbate the nausea. All the literature says to eat a healthy diet, but it may be what is giving me all the trouble, but what's left that is healthy? Nausea is so incapacitating! I'll be thinking of you.

k1
Posts: 220
Joined: Dec 2009

Pascal, glad to have a fellow traveler on the exact same schedule. And thanks to the rest of you as well.

My doctor prescribed two nausea meds, and the pharmacist explained that one, Zofran, is "non-drowsy" and the other one is Compazine, the "drowsy" formulation. Zofran is up to two times a day and the Compazine is up to three times per day.

Neither one is doing much for my nausea, although I am now not vomiting and more or less just sick at my stomach and maybe even wishing I could actually vomit.

This morning I decided to take only Xeloda and neither of the anti-nausea pills. I could tell no real difference in NOT taking anti-nausea meds than taking it...nausea was about the same. I might have even been slightly less nauseated taking no nausea meds.

The only time I am not nauseated seems to be when I am unconscious and asleep.

K1

pascall5
Posts: 25
Joined: Aug 2011

Hi K1, Today, Tuesday, I got up, ate breakfast and worked in the morning (I'm a medical transcriber and work from home.). I had very, very little nausea today and did not take any Zofran or Compazine. Yesterday, I felt EXACTLY as you described above. So, it just goes to show...we have to take this trip one day at a time. Every day seems to be different. The neuro sensitivites with Oxaliplatin are fun too, aren't they? I have the "first bite syndrome" and have it in my eyes if I tear up as well, so I can't even feel sorry for myself! Ha. I'll be watching for you K1 and maybe we can look back on all this together when we get to the end of it. By the way, don't suffer in silence. Call your Onc and get yourself a nausea medication that works. They can put a man on the moon, they can keep us from feeling crappy...well maybe just not soooo darn crappy. Hugs to ya.

Mary

k1
Posts: 220
Joined: Dec 2009

Day 5 today since started Xelox regimen. In the afternoon I started having diarrhea for the first time since chemo. This actually helped my nausea after my stomach was empty.

I took no nausea meds with Xeloda this morning and spent the first half of the day in bed and the rest felt good so I must have needed it. I did take the Compazine last night with the night dose of Xeloda and I think that is why I was sleepy-headed today, but it was a good sleepy-headiness.

I tried drinking something cold today and did not have a problem, but I'm not going overboard with cold stuff just yet. I go to oncologist tomorrow and will ask for new anti-nausea RX.

K1

taraHK
Posts: 1961
Joined: Aug 2003

I've been on both -- and in different combinations. Unfortunately they both cause me nausea -- although, for me, the nausea with Xeloda is pretty mild and I think the oxi is worse. Can you experiment with different antinausea meds? I have Emend and Navoban prechemo (premeds), Navoban shots during chemo (am and pm) and then I take Navoban pill for 1-2 days after chemo. (I'm on folfoxfiri right now - -48+ hr drip). That works pretty well for me. Unfortunately the antinasea meds can cause constipation (pardon my frankness here!). I use prune juice and dried fruit to combate -- about 3 days after chemo there is a rather dramatic shift in the other direction - watch out!

Good luck.

Tara

jjaj133's picture
jjaj133
Posts: 869
Joined: Mar 2011

As they say, everyone is different. I am on xeloda only and very little nausea, 8 pills a day 2 weeks on 1 off. Fatique, and go from being constipated to running to the commode/
can't complain. the oxaliplatin was much harder for me.
Good Luck finding the right mix to help you,
Judy

keystone's picture
keystone
Posts: 134
Joined: Dec 2010

I hope your nausea is getting better the Xeloda was a problem with my husband until he started removing Folic Acid from his diet. This made all of the difference in the world. I am intersted in the drug shortage. I asked one of the nurses at chemo about it and they were very vague in their answer, which worries me. My husband is doing post chemo and takin 5-FU. Can you tell us where you are from and what they said about the shortage?

k1
Posts: 220
Joined: Dec 2009

I am from Texas and both of our large NCI cancer centers in this state have experienced the drug shortages -- M.D. Anderson in Houston and UT Southwestern in Dallas.

They are not alone if you read the media stories...this is happening many places and at the best cancer centers in the U.S. See the link above in earlier post to read the NY Times article.

The patients that are already on the first-choice drug regimens for various cancers are receiving the highest priority in continuing to get that particular drug. Patients new to chemotherapy are being started on drugs that are in the most steady supply right now, and being told that if the drugs in shortage become more available later in the year they may be switched to the first-choice regimen.

So in my case I was supposed to get 5FU but by the time I recovered from surgery enough to start chemo there was a shortage and now I am getting Xelox. My doctor said if supplies of 5FU become steady he may switch me over in a couple of months.

If your husband is already on the 5FU chemo then he should get the highest priority to continue to stay on it if they have any at all since he is an established patient.

I saw my oncologist today and he said the thing that no doctor wants to do is switch patients back and forth between different chemo regimens because one is available one week and not the next. They are making decisions based on the big picture of predicted supplies, not the daily or weekly snapshot.

K1

Tinker243
Posts: 3
Joined: Sep 2011

Hello,

I'm new here, I registered so I could share what I hope is helpful info :-)
My husband uses Sancuso Patches for the nausea he experiences from Xeloda, 500 mg 6 pills per day. One week on, one week off. He also has infusions of Oxaliplatin and Avastin every other week. If your insurance will cover the patches, I strongly recommend them. They've been wonderful!

k1
Posts: 220
Joined: Dec 2009

Thanks for the info on Sancus patches and Ammend/Emend, Tinker and Rick. I'll ask about them.

Since it has been a week since my oxaliplatin infusion and I'm still nauseated (although there are short periods when it goes away for an hour or two) I'm leaning toward Xeloda as the culprit of my nausea.

I did have much more energy today for the first time since I started chemo last week.

K1

keystone's picture
keystone
Posts: 134
Joined: Dec 2010

If it makes you feel any better I really wish Phil could have used the Xeloda post chemo. He responded so well to that treatment. Xeloda falls under pharaceudical in my insurance plan and only paid 50%. We could do that short term (6 weeks as before) but not 4 months.

Thanks so much for the info on the shortage. The way I look at it if 5-FU becomes unavailable to him thats just a sign that he needs to be on the Xeloda. I believe all things happen for a reason!!

relaxoutdoors08
Posts: 520
Joined: May 2011

I have tried to respond to the shortage 3 times and I am now wondering if my responses are being blocked. I will try again. Sen. Amy Klobuchar who works across party lines wrote a bill to address the issue with shortages of Folfox drugs like 5Fu and Luecuvorin. These are inexpensive drugs $30. US and $60. per treatment when I finished Folfox in April, 2011. Oxiplaten was $5000 in MN and $11,0000 in Az. Her bill would make sure drug companies have a year supply on hand of not only colon cancer drugs but other cancer drugs which also are generic and save lives. Please be informed and be part of the solution to help those being dx and do not have 5Fu and Leucuvorin available for their treatment and must make substitutions.

NB

RickMurtagh's picture
RickMurtagh
Posts: 586
Joined: Feb 2010

When the nausea medicine I was on stopped working they put me on Ammend. It is like $100 a pill, but I did not have the slightest bit of nausea after that.

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

It seems everyone's nausea comes in different degrees of severity, likewise, everyone reacts differently to the "known" anti-nausea meds.

I was having a heck of a time finding any one, or combination of anti-nausea meds that would work for me... until this past winter. A fellow colon-cancer friend suggested that I get a prescription of Ativan (1mg tablets) from my oncologist. Now Ativan, being an anti-anxiety med, would have been a med I would never have thought of... and if it wasn't that he had used it himself and had success with it, I would have pooh-pooh'd anyone's suggestion of it.

But sure enough, it worked like a hot damn! The tablets are extremely small and you put one under your tongue (no chewing) and it dissolves very quickly and enters your blood stream via under the tongue. Now, one of the things that happens with this med is it relaxes you... to the point you might think you are getting drowsy, but really, it's just your body going into relaxation mode. If you are feeling at all nauseas, which is why you took the pill in the first place, you'll find the nausea has disappeared.

It's certainly worth a try since it seems to work for some of us.

Cheryl

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