Oxaliplatin/Xeloda (XELOX) Experiences

SonicSedition

Hey Guys,

About to start mop up chemo on Monday. Would like to hear your personal experiences with this protocol Oxaliplatin/Xeloda (XELOX). And also some suggestions/recommendations that may help while on this.

Thanks!

JanJan63

Sorry, I've never heard of

Sorry, I've never heard of that one.

Jan

Semira

My husband had this back in 2011/2012...

... and he tolerated it (mostly) well. The cancer did not come back since, although he was stage 4 before so I like to think that it helped.
After 3 to 4 sessions the Oxi gave him really bad cold sensivity and neurotpathy so they stopped that part and he did only the Xeloda Tablets for the last sessions. Against the neuropathy and cold sensivity he took Glutamine and it really helped to tolerate the  side effects until the docs stoped the oxi to prevent permanent nerve damage. I forgot the dosage but I hope you will find it in the web.

Hugs from Cologne, Germany and
all the best

Petra

kyolcu

Oxaliplatin

I just started a new treatment regimen of 5FU, Avastin and Oxaliplatin last week. I had 5FU and Avastin before but not Oxaliplatin. It is a strong chemo. As other members explained cold sensitivity is number oneissue then fever. I did not go to ER but I always watched it. It also gave me symptom of a lot of sweating. I will have second round next week and will see if there will be any other symtoms.

Kadir

SandiaBuddy

Xelox

If I were in your shoes I would review the many posts on this board about the combination, or its functional equivalent of 5FU and capecitabine.  A few thoughts from my experience, be sure they do the oxi infusion in your non-dominant arm.  Mine felt like it had been rolled in broken glass, and I was glad to have my right arm functioning better.  Beware of the cold.  I went to the grocery store and picked up a frozen dinner for an easy meal--it was like being bit by a snake.  Luckily it landed in the cart, so it was not so embaressing.  The doctors never warned me about this, but there were plenty of postings that did.  Use a heavy cream on your hands and feet (Eucerin for me) starting now.  Have anti-nausea meds ready to go.  I got so I could not walk in a grocery store without waves of nausea.  The meds help.  Plan for some time off and some support if it is available.  Everyone reacts differently.  Work with your doctor to try a lesser initiial dose of oxi and the same with the capi.  I negotiated down to an 80% dose of oxi and it was so bad I quit after one injection.  I ended up on about a half dose of capi--that was all I could handle.  Some days are better than others.  Do not plan social engagements without an ability to cancel.  Sometimes you are fine in the morning and bad in the afternoon.  It  is hard to predict.  The capi seems fine at first, but it sneaks up on you over time.  Review medical articles about the potential side effects and keep your eyes open for them.  I was one of several on this board who had heart problems from the drug.  I never aniticpated it and the doctors did not warn me about it.  Beyond that, I would recommend as much and as regular exercise as you can tolerate.  Some people cruise right through chemo without problems, others are knocked on their rears.  Be ready for either.  Best of luck to you.

Trubrit

FOLFOX

I did the FOLFOX, so Oxaliplatin and 5FU.  I've heard the Xeloda/pills are milder, but hey, define mild.

Keep a keen eye out for neuropathy. When that gets out of control, its a hard one to shake.  Some tingling and numbness is a given, but when the hands and feet start changing colour, then its getting out of control.  Your Onc should be keeping an eye on it as well, but they get busy, and miss things. 

You may experience an electrical shock sensation when you first bite into food or take liquid in the mouth. It is usually momentary.  

You will experince a shock when you touch something cold, and your throat may tighten up if you drink cold liquids. Keep gloves around all of the time. I dropped so many things right out of the fridge, that I spent a great deal of my first few weeks on treatment, cleaning the kitchen floor.  - as an aside. I still have neuropathy, five years out; and today, I dropped a carton of milk. Its never ending if you don't keep an eye on it, so be warned -

Part of my treatment was during winter and spring, and the cold would make my eyes twitch. Crazy feeling, but it went away. 

I lost my peripheral vision, and drove my husband's car into a tree. I also lost my depth perception. 

OK, I have a whole list of things. I could post my previous link on them, if you want.

The problem with treatment is, we all experience it in a different way.  Chemo and radiation were wicked for me. Others seem to breeze through it. Well, I bet they wouldn't say breeze, but you know what I mean.

Good luck.  Come on and post anything that bothers you, and someone will have the perfect answer.

Tru 

plsletitrain

I've had both Folfox and Xelox

If I were to compare the two, Folfox would be much "milder" to me.  Its the oxaliplatin that's the challenge though, and its present whether you go folfox or xelox.  Its only a two-hour infusion but it is quite...a challenge.  But don't be discouraged, it is manageable.  If paired with 5-Fu and folinic acid, the oxaliplatin is a bit tolerable.  The pain in my arm where it is infused feels numb but it felt number when paired with Xeloda.  Xeloda didn't give me any major side effects except for the occasional palpitations.  I don't have neuropathy yet so it is correct when they say chemo affects everyone differently.  You'll feel numbness after being infused with oxaliplatin and yes, you'll also lose your appetite so try to eat as much as you can when you're on break.  Good luck! 

Annabelle41415

Folfox

My xeloda was combined with radation and Folfox with oxi and was used later after surgery.  Folfox with oxi is cummulative so be aware of cold things.  It is tolerable but very, very hard on the system.  It will give fatigue, possible bathroom issues,  and other symptoms.  Good luck and wishing you well.

Kim

myAZmountain

Been on FOlfox and Avastin

Had 6 rounds so far, fingers numb, reddened and unable to pick up anything colder than room temp, first bit syndrome where throat feels like its closing up and you have swallowed a "sparkler" fireworks thing. Brain fog, constant runny nose and sinus drip--think thats fro the Avastin as well as hypertension. Hands and feet peeled from the 5FU and was very photosensitive, plus some diarhhea. Yeah its super fun!!

SonicSedition

Much worse than I thought

Well I guess I ended up being one of the unlucky ones. Ended up with about every side effect possible including my throat almost closing. Can’t swallow my pills but can eat someWhat. Like so many others I am weighing my risk/rewards considering  Oncologist said this is at best 10-15% regarding reoccurrence / 5 yr survival. It is so bad the oncologist said we may have to discontinue. I’ll continue with the Xeloda when I can swallow it, but this is not living.

SandiaBuddy

SonicSedition said:

Much worse than I thought

Well I guess I ended up being one of the unlucky ones. Ended up with about every side effect possible including my throat almost closing. Can’t swallow my pills but can eat someWhat. Like so many others I am weighing my risk/rewards considering  Oncologist said this is at best 10-15% regarding reoccurrence / 5 yr survival. It is so bad the oncologist said we may have to discontinue. I’ll continue with the Xeloda when I can swallow it, but this is not living.

Worse

Sorry to hear the bad news, but you seem to have followed a similar course to me.  You might want to look through some of my old posts to see how it went.  I remember after the oxi distinctly deciding that I would rather have one good day (or year) without it, than ten with it.  I ended up just doing the capecitabine (xeloda) but at a reduced dose.  Considering your bad reaction you might want to work with your doctor to start on a 50% dose and work up.  Then you can control it on a daily basis by adjusting your dosage.  I have no evidence for this theory, but it strikes me that the younger and more physically active you are, the potentially worse the side effects are.  For me, oxi/capi was supposed to give me about a 10% reduction in the chance of recurrence, while capi alone was supposed to result in about a 7.5% reduction. So far, I am doing fine, but there is always the sense that the other shoe could drop any time.  Hopefully you will back on your feet and feeling better in a few days. 

Trubrit

SonicSedition said:

Much worse than I thought

Well I guess I ended up being one of the unlucky ones. Ended up with about every side effect possible including my throat almost closing. Can’t swallow my pills but can eat someWhat. Like so many others I am weighing my risk/rewards considering  Oncologist said this is at best 10-15% regarding reoccurrence / 5 yr survival. It is so bad the oncologist said we may have to discontinue. I’ll continue with the Xeloda when I can swallow it, but this is not living.

Throat

My Oncologist told me that the throat closing was just a sensation, and that it was not actually closing.  Ask your Oncologist about it.

I used the old 'mind over matter', and worked my way through it. 

Chemo can be chronic, and I'll scare the pants off of you and tell you that, but, at the end of the day......

I toughed it out, have several unpleasant long-lasting side effects, but have had a wonderful almost five years NED - hoping for more, but will find out after my next CT scan and blood work. 

But, one thing at a time. Work on that swallowing. Run it by your Onc, see if he says it's just a sensation, and if so, find somethign that works for you. 

Tru

 

beaumontdave

SonicSedition said:

Much worse than I thought

Well I guess I ended up being one of the unlucky ones. Ended up with about every side effect possible including my throat almost closing. Can’t swallow my pills but can eat someWhat. Like so many others I am weighing my risk/rewards considering  Oncologist said this is at best 10-15% regarding reoccurrence / 5 yr survival. It is so bad the oncologist said we may have to discontinue. I’ll continue with the Xeloda when I can swallow it, but this is not living.

Swallowing was more work and

Swallowing was more work and the epiglottis felt like a punching bag that objected everytime cold or hot hit it, but I never felt like my throat was closing. Sounds frightening..............................................Dave

plsletitrain

So sorry to hear...

...you had a hard time on your 1st round.  The oxaliplatin is a tough drug I swear it's one of my life's feats to have infused it in my body 11 times now.  You can weigh the risks vs. benefits.  I myself am putting a limit, one day I'll say enough is enough.  I pray for wisdom and I hope you find peace in whatever decision you make.  I also hope your side effects subside soon.  

Annabelle41415

SonicSedition said:

Much worse than I thought

Well I guess I ended up being one of the unlucky ones. Ended up with about every side effect possible including my throat almost closing. Can’t swallow my pills but can eat someWhat. Like so many others I am weighing my risk/rewards considering  Oncologist said this is at best 10-15% regarding reoccurrence / 5 yr survival. It is so bad the oncologist said we may have to discontinue. I’ll continue with the Xeloda when I can swallow it, but this is not living.

Sorry

Treatment isn't pleasant and yes this is a common sensation.  It always felt like my pill was getting stuck in my throat but it wasn't.  Mine started getting unpleasant after 4 rounds and at 5 asked my doctor to cut down the dose of Oxi but she said it was better in conjunction with what my other drugs were so just tuffed it out.  I've got permanent neuropathy though, but there are others that have done more treatments than me and had no long term damage.  It all depends on your system.  Just make sure that you communicate with your doctor on all your symptoms.

Kim

SonicSedition

Oncologist called

Thanks for your comments everyone. After my newest symptom where the muscles in calf’s and feet were so swollen and painful that I can’t hardly walk, Oncologist is recommending we stop. He said I’m in the 5% of patients who end up with so many severe side effects. He told me it was obviously my decision to make but the small benefit may not be worth it for patients like me. I’ll start back with the Xeloda but this is not living. 

abita

SonicSedition said:

Oncologist called

Thanks for your comments everyone. After my newest symptom where the muscles in calf’s and feet were so swollen and painful that I can’t hardly walk, Oncologist is recommending we stop. He said I’m in the 5% of patients who end up with so many severe side effects. He told me it was obviously my decision to make but the small benefit may not be worth it for patients like me. I’ll start back with the Xeloda but this is not living. 

This is no comment on the

This is no comment on the oxaliplatin decision, as I get how bad that is for you. Did you have lymph nodes removed? I don't know know what muscles swelling means, but swelling in legs can be a sign of lymphodema, which is something to watch for when you have lymph nodes removed. My point being, aside from the oxaliplatin, if you have lymphodema, you can google ways to help alleviate it. But again, that isn't muscle swelling, it is fluid, so probably not what you have.

Joan M

Have you tried Folfiri?

It has been easier for me to tolerate than when on Folfox in 2016.  I had only 8 round of Folfox then went on Avastin and Xeloda for 13 months.  Now I'm on Folfiri.  I've had some problems with Folfiri, but fewer than when I had the Oxaliplatin.  Maybe they can try that for you?

I hope things go better for you.  

Joan 

Unknown

Xeloda--Severe Reaction

My husband was placed on Xeloda, as we thought it was his freedom from the pump, it turned out to be the hardest 12 days since this journey started in January 2018.  He had every possible side effect and only after he could not walk because his feet hurt so bad did the oncologist agree to stop the drug.  He is now back on the pump every other week.  He receives avastin as an infusion at the hospital then goes home with 5FU for two days.  He begged for a four week break but the oncologist said it was not standard protocol.  He is mentally and physically falling apart.  It's so hard to watch.  

Trubrit

unknown said:

Xeloda--Severe Reaction

My husband was placed on Xeloda, as we thought it was his freedom from the pump, it turned out to be the hardest 12 days since this journey started in January 2018.  He had every possible side effect and only after he could not walk because his feet hurt so bad did the oncologist agree to stop the drug.  He is now back on the pump every other week.  He receives avastin as an infusion at the hospital then goes home with 5FU for two days.  He begged for a four week break but the oncologist said it was not standard protocol.  He is mentally and physically falling apart.  It's so hard to watch.  

Protocol

If your husband wants a four week break, I mean REALLY wants a four week break, and understands the implications of possible growth or spread, then his Oncologist cannot deny him that break.  Remember, the Oncologist is treating your husband, but it is your husband's body, and his choice.  

I suggest you discuss all the possibilities and implications, and when a decision is made, do not look back. 

I say this because, when I was undergoing radiation, the pain was so bad, that I was desperate to stop. My Rad Onc said no. One of the Rad techs walked me to the the vehicle (because I could barely stay upright), and told me that I was the one to make the decison, not the Rad Onc, and I realized he was right.  

Good luck as you move forward, with whatever decison your husband makes. 

Tru

myAZmountain

unknown said:

Xeloda--Severe Reaction

My husband was placed on Xeloda, as we thought it was his freedom from the pump, it turned out to be the hardest 12 days since this journey started in January 2018.  He had every possible side effect and only after he could not walk because his feet hurt so bad did the oncologist agree to stop the drug.  He is now back on the pump every other week.  He receives avastin as an infusion at the hospital then goes home with 5FU for two days.  He begged for a four week break but the oncologist said it was not standard protocol.  He is mentally and physically falling apart.  It's so hard to watch.  

5C's So sorry your husband is

5C's So sorry your husband is having such a horrific time. I did 6 cycles of Folfox and had a 6 week break, it was initially due to an infected port but I extended it so I could enjoy visit with family. Luckily my mets did not grow and am back on chemo--I think that taking some short breaks should be the patients decision, we all know the risks, but there has to be some quality of life.