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colon cancer and xeloda pill

mrs_k
Posts: 4
Joined: Dec 2010

hi i unfortunately have colon cancer type 2. i'm having chemo at the moment
i have the drip at the hospital and take the xeloda pill 1800mg twice a day.
i was wondering if anybody knows if i can have jus the drip on its own or the pill.... and what effect that will have
i have tried looking on the net but cant seem to find any info.. if anybody can help me with getting any info.. please do respond
also i don't have a direct contact with a doctor.. besides the doctor will say take both.... and i just wanted to know what the general conscientious was around the pill and drip.... it helps speaking to someone who knows what i'm going through....

AnneCan
Posts: 3692
Joined: Oct 2009

Welcome to the forum. I don't know the answer to your qyestion, but wanted to say hi.

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

I'm on chemo now too. I receive Oxaliplatin and 5fu IV every two weeks. Next dose #3...Tuesday. Ugh.

Gail

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

sometimes the xeloda pill is given alone. I was once on xeloda for 8 months after the colon cancer moved to the liver.
Do you know which drug you get at the hospital? A lot of people here get a drip of oxaliplatin and then take the xeloda as the pill.....this combination is called xelox so maybe you could goggle that.

I find it strange that you don't see a doctor before your infusion. I assume that the xelox is the combination of drugs that your oncologist wants you to get. Every single case would be different but if you are having bad side effects I would really try to talk to your nurses and see a doctor again.

welcome to our our colon forum

maggie

mrs_k
Posts: 4
Joined: Dec 2010

thank you for your kind welcome.
its a very difficult time for me.
i am having oxaliplatin at the hospital, then the xeloda pill twice a day (1800mg)
the reason im asking what the effects are of just the drip or pill on its own is because the side effects of having both is unbearable... i'm constantly in pain.. in particular the legs...

the doctor, i do meet with him when i'm in the hospital... but can't do anything when i'm home... when i said i don't have direct contact... i meant i can't pick up the phone and call him or pop in to see him. my appointments are every 4 week but if in the meantime im in pain (almost all the time) all i can do is contact my gp.. who prescribes me with painkillers, which do nothing for me
it's absolutely frustrating because i'm in incredible pain and find it difficult to believe chemo is good for me
the first time i had the drip, i had cold sweats and felt immensely dizzy in the hospital. even the nurses were shocked and did not know what to do.. and when the duty doctor says, your symptoms are uncommon and not heard of, we've not had patients experience that before. that really does not help...and absolutely terrifies me

i apologise if im ranting on.. i just want to get better.
mrs k

djm_2010
Posts: 52
Joined: Dec 2010

Hello mrs k, We are on the same meeds I'm on xeloda 1500 mgs 2x a day and oxaliplatin drip every 21 days. The first time had the drip ails had tremors, with intense muscle pain and neuropathy. My onc gave me vit b complex at least 5 x a day and gabapentin for the neuropathy and it really worked for me. Actually the 1st 2 sessions for me were difficult but after the 3rd session I was already able to adjust and more tolerant of the side effects and able to work and go out after 2days of rest. Your onc should be the one prescribing meeds and what might work for me might not be good for you. You should really ask him what he can give you. It's good that I work as health professional and able to recognize this symptoms and know what to take. I'm praying for you and hope that you'll be able to adjust. Ialready had 5 sessions and have 3 more to go, yehey.. Take care!

mrs_k
Posts: 4
Joined: Dec 2010

thank you for your kind welcome.
its a very difficult time for me.
i am having oxaliplatin at the hospital, then the xeloda pill twice a day (1800mg)
the reason im asking what the effects are of just the drip or pill on its own is because the side effects of having both is unbearable... i'm constantly in pain.. in particular the legs...

the doctor, i do meet with him when i'm in the hospital... but can't do anything when i'm home... when i said i don't have direct contact... i meant i can't pick up the phone and call him or pop in to see him. my appointments are every 4 week but if in the meantime im in pain (almost all the time) all i can do is contact my gp.. who prescribes me with painkillers, which do nothing for me
it's absolutely frustrating because i'm in incredible pain and find it difficult to believe chemo is good for me
the first time i had the drip, i had cold sweats and felt immensely dizzy in the hospital. even the nurses were shocked and did not know what to do.. and when the duty doctor says, your symptoms are uncommon and not heard of, we've not had patients experience that before. that really does not help...and absolutely terrifies me

i apologise if im ranting on.. i just want to get better.
mrs k

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

I had at the same time oxiplatinin/avastin/xeloda. So not that unusual.

Buckwirth's picture
Buckwirth
Posts: 1271
Joined: Jun 2010

You seem to be on a treatment called Folfox. It is 5fu (administered in a 42hr drip pump, or through the pill called Xeloda), oxcalyplatin(sp) and leucovorin(sp). Add in anti-nausea, fluids and some other magic chemicals designed to make you comfortable and that is your treatment.

Oxcalyplatin with Xeloda tests out as being more effective than Oxcalyplatin with the drip/pump, and neither is particularly successful on their own, Personally, I am not tolerant of Xeloda, so it is the pump for me. One of the advantages of the pump is that there are about 10 days between treatments, and you get to feel almost normal for about 5 of them.

As to calling your oncologist... I find this unacceptable. At the very least you shoul be able to call you nurse, and she could talk to the Dr on you behalf.

What country/state are you in? Do you have the option of seeing someone else?

Let us know, many here have challenged the system with good outcomes and seem more than willing to share their experiences!

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

Sorry you have to be here, but you won't find a better group of people for support and who do understand the frustrations, as well as the joy when a treatment is working.

Now, for the most part, none of us are doctors here, so no one is going to suggest you stop part of your treatment, especially when we only have a couple of sentences of information to go by ;)

When you say you are on the "drip" at the hospital... you didn't say exactly what that drip consists of. When a doctor/oncologist prescribes a chemo treatment for a patient, it is based on the individual situation of the patient, as well as the boring facts like weight, health, age, what kind of treatment they have had or the plan is to have (IE: did you have surgery to remove the tumour, a colon resection, etc).

There is no way I could even hazard a recommendation of only taking one and not the other without knowing what the chemos are and the reason the doctor prescribed these particular chemos.

What it sounds like to me, since your cancer is diagnosed as a Stage II, is that they are treating it very aggressively to give you the best chance that you won't have a recurrence. That is a very good thing. If it was me, since I am one of those who do believe in chemo as being a wonderful weapon against this monster, I certainly wouldn't want to jeopardize my chances of the cancer not coming back by cutting out one of the prescribed chemos. Especially if I don't know why the doctor has prescribed two in the first place. You DO need to talk to your doctor and find out what treatments you are on and what the expectations are for them... and why you are on two vs one. A lot of us are on a combination of chemos at one time or another, and there's always a reason for it.

Now, what I am a little concerned about is ... why don't you have a direct contact with a doctor? You can't get the chemo administered without a doctor/oncologist prescribing.... and when you are on the chemo, you will have to be having regular, every 3-4 week appts with the oncologist, as well as blood work done before each chemo session at the hospital, as well as before they prescribed the next set of Xeloda pills. So why aren't you seeing a doctor, or did I misunderstand what you mean by a direct contact with a doctor? Also, why do you think "besides the doctor will say take both"... if he/she is going to say that, then he/she will have a reason and it's that reason that you need to know. If the doctor you have seen answers no questions and just brushes you off, then you need to change doctors and find one who will explain your treatments to you so that you understand. But the last thing you would ever do is compare your treatments to someone else's and make the decision, "Well, if Cheryl is only on the pill form Xeloda and not on an intravenous chemo, then I'm going to stop my intravenous chemo". Yikes... never ever think that, since everyone's situation is unique and their treatments are planned around their own situation.

I hope this helps... and welcome to the club!! Horrible reason for eligibility but the best support group you will find anywhere!!

Cheryl

mrs_k
Posts: 4
Joined: Dec 2010

thank u for your welcome
i'm sorry i should have been clearer about the having contact with the doctor...
as i've explained in my last post....i feel i don't have any contact with anyone professional and when i do its painkillers and keep going with the medication...
i'm at a point where i'm losing faith and i just need someone whose going through a similar treatment to me to tell me it's going to be ok... it's hard for the first few months but you feel a difference after a bit.
an maybe tips about how i could feel better
and thank you to everyone's warm welcome and well wishes

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

Hmm... it's hard to decide which is causing you the most pain... the Oxipiliptin or the Xeloda. I have had both, but at different times. When I was on the 5FU/Oxi, I got really bad neuropathy and nerve damage in both my feet and legs and was told that this usually goes away once the treatments stop. Well, it got so bad that we stopped the Oxi after 10 treatments and continued with the 5FU... but alas, the neuropathy/nerve damage never did go away. Lucky me :/

With the Xeloda (which is really the pill form of 5FU), hard to say if it caused more pain with the nerve damage or not since I already had it... but it did cause severe pain on the bottom of my feet, especially in the heels. My oncologist changed my schedule so that I was taking it Mon - Fri, twice/day for two weeks, with a break on the weekend. That helped, but didn't totally get rid of the pain... not until we stopped it completely and now the heel pain has totally disappeared.

What does help somewhat with the nerve pain is to take the drug "Lyrica". I take 150mg in the morning and 150mg in the evening. Without it, I know I'd want to amputate my legs :)

Sooooo, when you next see your oncologist, tell him you don't really care if your side affects are not what others feel, they are what YOU are feeling and you want something to stop the pain. Tell him what pain meds your doctor has given you and that they don't work. Ask him about Lyrica and whether this pain you are feeling is nerve damage or something else, and if it's something else, then what is it and what will stop it... or at least bring it down to a comfort level that you can handle. If he says he doesn't know what is causing it or why because he's never heard of anyone having those side affects, then say, "Fine... I would like to see someone who DOES know and can help me with it, rather than just send me away and tell me to put up with it."

The oxi is a particularly nasty chemo as far as side affects go... and more people have problems with it than don't. One of the things my oncologist told me right at the start was, there are many different kinds of treatments as far as chemo goes that we can try. They all have their known side affects and then there are all those we don't know about because people respond to the drugs differently. The one thing she wanted to stress is that NO ONE should ever be suffering from pain, nausea or diarrhea unnecessarily. For every side affect there is to chemo, there are medications that will combat the side affects... but it's up to the patient to not suffer in silence thinking that this is the way it has to be... the patient MUST speak up and say exactly what their symptoms are and then something will be prescribed so that side affect goes away. My oncologist's nurse gave me a sheet of paper with numbers to call depending on whenever I needed someone... and my oncologist wasn't available. They didn't miss a trick... there was someone to call 24 hours for any symptom or side affect and that person would be able to prescribe to a pharmacy a prescription if need be.

So, when you see your oncologist, you let him know that you are not comfortable taking these chemos if you have no one to talk to when you are suffering so much and it seems no one really cares and is just writing you off as "Well, we've never heard of someone reacting like that so we are just going to ignore it". If he still writes you off, then demand to change oncologists to someone who will listen and work with you so that you aren't having to suffer.

Keep us posted!

Cheryl

tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

My biggest question is why you don't have direct contact with your doctor. Do you see him at all? Strange! I would insist on being able to consult him about anything connected with treatment.

*hugs*
Gail

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

sorry your here but this board is made up of great people.
look forward to your posts.
Pete

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

May be the doctor has you doing both chemos because you are not doing radiation.I did xeloda,and radiation at the same time,but my pain came from the radiation,not the chemo.If you are having alot of pain,you should talk to the chemo doctor,and find out what's going on.Good luck.

dorookie
Posts: 1736
Joined: Jul 2007

Ms. K

i was originally DX as stage 3, had surgery, chemo and radiation, the first time I had the drip, I did take some xeloda while doing my rads, but just 8 months after completing that treatment the cancer came back. again I had to have surgery and more chemo, the second time I had Xeloda alone, 5000 mg a day for almost 8 months, but this time it worked, I have been cancer free for just over 2 years now and praying that continues. Yes I have bad side effects with neuropathy in both feet. I too was given lots of pain killers and am currently still on them, trying to get off of them, I think I might still need some kind of pain meds but really want to get off the hard stuff. God forbid the cancer were to come back I would want to do the Xeloda again and not the drip, it was much easier on me than the drip. But that is just my 2 cents... Keeping you in my prayers, stay strong, you can do it..

HUGS
Beth

djm_2010
Posts: 52
Joined: Dec 2010

Hello mrs k,

I'm also on xelox and on my 2nd cycle on thurs. With xeloda you'll usually have diarrhea but if I experience at least > 5 loose bowel movements in the morning I immediately take loperamide or anti diarrhea pills and usually I'm ok or sometimes experience constipation after that which for me is better than LBM. I think the pain that you feel on your legs is neuropathy and my doc gave me vit b complex for that and it helps. I take it at least 2-3x a day when I'm on xeloda for 2 weeks. For my dry hands and feet and dark nails I just place lots of lotion and use dark nail polish. I had xeloda before with my radiation last aug but I tolerated it well with oxaplatin I feel weak and cold for at least 5 days. One tip try to eat a lot so that you won't feel weak but steer away from milk and fatty foods and this will aggravate your diarrhea. I'm praying for you that you're symptoms will at least be tolerable and please talk to you're doctor, that's the best solution. Take care and God Bless you!

belindahill's picture
belindahill
Posts: 144
Joined: Jan 2011

Hello, having same problems with LBM, on 5th cycle of xeloda for stage 3b colon cancer.
So far so good, very scared of Ct and colonoscopy at the end of treatment. So much want it all to end.

sangora
Posts: 218
Joined: Mar 2011

I am new to this board and have found the above comments helpful. I have esophagelia Cancer and take xeloda 4000mg daily. Half in the morning and half at night. I do 7 days on and 7 days off. Have had very few problems. Thankfully no hand/foot syndrome as of yet and have been on this plan since January. Before, I took the xeloda with cistplatin and epirubasin. This put me in the hospital for a week so then went on just cistplatin and xeloda. In january, my tumor was gone and there has been no spread. The xeloda seems to be taking care of me on a maintenance basis. For those having severe side effects, talk to your oncologist about the 7/7 cycles.

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